First, I wish to apologise that this is a long and rambling essay. This is my way of processing and understanding complex problems and for the purpose of a simple blog post, I don’t have the surplus energy or motivation to fashion my thoughts into a more condensed form. Sensitive readers might also be aware that I’m discussing religion and sexuality in a critical manner.
The below paragraph in a letter from a psychiatrist (E.M) to the GP is complete garbage. For starters, ‘enduring anxiety’ is the most hollow and baseless descriptor one could possibly think of, in fact it’s the lazy man’s solution to the complex problem of investigating a patient’s discomfort in the thorough manner they deserve. The whole thing reads like an accusation, not a compassionate explanation for a mental health problem. According to this, I am confused about the manifestation of symptoms from my many diagnosed health conditions because this doctor wants the world to know he knows better than all the specialists combined, and is therefore in the incredible position of offering me medical advice that he doesn’t even have the qualifications for.
But let me start from the beginning.
I haven’t been very well. I’m post menopause, and while some health issues such as the dreadful insomnia and the restless legs are a little bit better controlled now, other problems such as osteoarthritis in the joints and increasing hyperacusis and tinnitus are rearing their ugly heads. I suffer from drug side-effects which include depression, but also feel generally downtrodden and worried for the future. In addition, I can’t seem to reach a point of peace in regard to the health services and I just don’t want to see any doctors ever again. My recent PIP renewal was not entirely successful and I feel deeply disturbed by the way I was treated. I was given two weeks to fill in the form and ten days to prepare for a video call. At the time, I didn’t have active support from my housing association and didn’t think I would get immediate help. I tried to do it all alone, which was a mistake.
The video call was horrible and dehumanising, I was lying in bed with noise cancelling headphones and ear plugs in the ears. The assessor refused to turn on the camera so I never saw her. She was in effect watching me like an animal in a zoo, writing down all these things about how she ‘observed’ me doing this and that (to be objectified in this way is truly dreadful and very triggering). Amongst other things, she claimed that I was sitting up on a chair, doing all sorts of acrobatics in front of the camera. In reality, I was lying down, very still, and barely moved a limb other than to grab my insurance number from a notebook next to me. The assessor’s voice was shrill and she also had a strong accent, so I had a very hard time understanding her. I told her so, and she just said there was nothing she could do about it. I strained and tried to guess what she was saying. Of course she reported that I didn’t have any issues.
I lost some of the reward I had before, which obviously made no sense as my health has been deteriorating since the previous application, and I’ve had new, debilitating problems such as the increasingly dreadful hyperacusis and tinnitus (H&T for short). I have previously told the story of the origin of my hearing impairment and the way the NHS exacerbated the condition when they botched my ureter during a hysterectomy in 2019. So, last year I filed a mandatory reconsideration but it was rejected. I then started working with two very nice benefits advisors from my housing association, and they helped me apply for tribunal. It’s been a year, and I’m still waiting for the court date. In the meantime, I finally had a look through the bundle of documents from the DWP and noticed that one of the doctors at my local surgery had filled in the PIP form from the DWP in a way that left little room for doubt that he didn't want me to have the benefit. While we all know that the assessments are random and unfair, I'm quite sure he is the real reason I lost some of the reward. I’m really shocked.
The story about this particular doctor goes back in time to 2022 when I was trying to get help with the restless legs syndrome, RLS (also called Willis-Ekbom Disease, because it is in fact a real disease). Dr P had only seen me ONCE and he knew nothing whatsoever about me or my conditions, let alone how they affected me in daily life. I had been seeing a mousy female doctor for a while but she had been too anxious to prescribe opioids for my refractory RLS as per the official guidelines. I’d seen her six times, and I had tried so hard to explain the severity of my problems with sleep to her, but she didn’t seem to understand what I was saying about the way it was fast deteriorating. This was clearly to do with menopause but it wasn’t easy for me to explain since I wasn’t quite sure what exactly was going on. It’s quite possible that the high dose of HRT I was on at the time was making things worse as well. I should have been advised about all this by a doctor but none of them understands anything about menopause and RLS is not taught in medical school.
Quite frankly, if a doctor is unwilling to deal with symptoms of complex chronic illness, then they should not be doctors. They should take a step back and reconsider their career choice, and maybe go back to plumbing instead.
In the end, this lady GP didn’t want to take responsibility for a prescription of a low dose opioid, but seemed happy enough for me to just top myself if the problem got so bad that the medications I was on then no longer helped me get the sleep I needed. Again, I was trying to hint at the desperation I would feel if I didn’t get sufficient sleep, but without raising any real concerns that I was suicidal. The reality is that I would quickly become suicidal if I didn’t sleep a minimum of eight hours. I said I had successfully tried some opioids I had at home after my recent surgery, but the fact I had such drugs at home made her even more nervous. She then acknowledged her defeat as a female doctor and referred me to her male GP colleague Dr G.P. This man was extremely unpleasant towards me. He pulled back in his chair with his arms crossed and refused to take a look at the brochures and documents I brought along because it was ‘something American’ (The Mayo proceedings is a compilation of the world’s top research and not just ‘American’). Neither did he consult NICE.
The respiratory consultants at the local sleep clinic that finally offered me an in-home test were not fully educated either, and the service was exceedingly poor. They fobbed me off by telling me to take iron (which I had already tried), and claimed they could not offer anything else because I was using benzos. I was trying to explain that the opioid should replace the benzos. In the end Dr P refused to offer the opioid as per the international recommendations for refractory RLS/WED guidelines, as if I do not really need to sleep and am merely exaggerating the problem! Instead he prescribed more iron supplements, so much that it would have come out of my ears. Because of the hepcidin response, taking that much iron is counterproductive, and a good doctor would know that. He also referred me to pain management, apparently for the hyperacusis. I just said ok because I thought it could be a way of accessing the opioid treatment, but it wasn’t the right pathway for RLS and it was also evident that they wanted to dredge the past for trauma to explain the pain with, and so I backed away in the end.
If a doctor refuses to offer something then they should surely offer a safer alternative, which Dr P didn’t. He also did not offer links to any peer reviewed studies to back up his unfounded claim that low dose opioids cannot be combined with any benzos. An opinion does not equal fact. This is not medicine, it’s prejudice. My insomnia is not a simple problem, but a doctor should at least be willing to look into all the avenues thoroughly instead of just shutting someone down. The dreadful psych I saw in 2020 bashed me for ‘doctor shopping’ because I was forced to look in several places for help with the RLS!
There is a huge RLS crisis going on. 2 out of 100 patients have it really bad and many contemplate suicide. I have also heard of so many people whose doctors have given them massive amounts of DA’s but when they have augmented, they have received zero support, and they have become suicidal as a result. DA’s appear to destroy D receptors so other drugs tend to become less efficient, as per latest research. The recommendations for drug treatments are thus changing. None of this is ok, it’s malpractice.
I vowed never to have anything to do with Dr P ever again. That’s when I went to see the GP of 15 years and we sorted the problem with the medication in a satisfactory manner. While he’s not very knowledgeable, he believed me, listened to my arguments, and trusted me with the medication I needed. Unfortunately the opioid doesn’t replace other medications to treat insomnia as I had hoped, but there has not been any issue with that because the opioid dosage is so low. I should add that I do not believe there to be any justification for denying me a few different tablets to control a really dire health condition. To refuse me this help while other people are offered piles of many poorly interacting drugs for conditions such as diabetes or heart problems, is simply discriminatory (my husband had a big pile of pills for his heart and I’m pretty sure they were not all compatible. He died of heart failure, and I don’t think the pills were innocent). I do not have sleep apnoea and I am not that fragile or frail. The opioid also helps a little bit with the hyperacusis/tinnitus pain that goes up at night.
However, when I saw Dr P’s notes about me I was quite shocked at the lack of respect in his wording. I was very close to making a complaint about him and the female doctor at the time. Whether or not it was his intention to be mean is irrelevant as it’s the consequence of his attitude and actions that counts. Whether he believes he follows the science is also irrelevant because he has demonstrated that he does not follow it and is incapable of critical thinking. He did not offer a solution and just left me to die from the RLS and insomnia. The two of them certainly make me feel sick to my stomach even now.
Dr P’s passage must be one of the longer GP entries about me, and there’s absolutely nothing essential in there about the management of WED/RLS, which is why I went there in the first place. Note that RLS/WED is a neurological disease and it is not psychogenic. Instead Dr P is mostly focused on spreading stigmatising rumours about me. It’s all based on the four (!) letters from a horrible locum psychiatrist clown called Edwin Martin who pretended he had x-ray eyes and clairvoyant capabilities, and therefore ‘knew’ I didn’t have any diagnoses of physiological illness (which is obviously untrue). I will henceforth call him E.M. It’s clear from these notes that Dr P was enamoured with E.M’s report about me and swallowed it all hook, line and sinker. He’s so eager to pin me down for somatisation and other unconfirmed mental health problems. The funny, or not so funny, thing is that he genuinely believed the psychiatrist’s letters actually said something meaningful, when in fact it’s all complete nonsense and a pack of lies that were based on stereotyping assumptions about me as a female instead of my genuine medical history. I think both men were suspiciously obsessed with my case.
The entry is dripping with misogyny and medical gaslighting. Dr P accuses me of refusing CBT as if I am a difficult patient. The refusal to accept psychological intervention is not well accepted by medical professionals generally, it seems to be seen as a ‘red flag’ for neuroticism and hysteria (such as Functional Neurological Disorder aka FND). Like so many other male doctors, he thinks CBT is the only thing that can fix me. He uses me to spread disinformation about CBT’s power to cure symptoms of chronic illness. Yet CBT does not cure symptoms of chronic illness. He relies on the testimony of two men (both foreign with accents that I found very hard to understand), both of who also disregarded the WED/RLS issue and tried to blame it all on anxiety, like they all do when they don’t want to admit to incompetence. They all seemed eager to tarnish my reputation in the hope that other doctors would follow in their footsteps and deny me the care and the benefits I deserve. As I will explain later, it’s exactly what happened. Shockingly, P did not acknowledge the prejudice and hostility in the psychiatrist’s letters, which he cherry picked out of a substantial number of other letters, for instance from RJAH, the orthopedic hospital (Dr A was my trusted rheumatologist until his department no longer accepted people with EDS). Only a cold supporter of misogyny would be able to ignore the hostility and derision the letters from E.M ooze. I wrote about it already in a previous blog post, but I’m going to elaborate in this one with a fresh perspective on misogyny.
In those letters, I’m picked on for completely ridiculous reasons, and my bodily autonomy is mocked with the idea that I am somehow fixated on biology and not interested enough in what is thought to be some kind of mental delusions about my body (E.M called it ‘biology’ in clinic). Of course, I want to add that I do not believe for a moment in the existence of psychosomatic disorders or that women are able to conjure up serious and painful symptoms with the magic power of their minds! Such claims are beyond ludicrous, and they originate from a long line of patriarchal arguments against women’s ability to have rational thoughts. (I have listed my resources about misgoyny and medical gaslighting at the end).
The above is a passage from E.M’s letters. I did not ‘want to discuss the diagnosis’ because I did not know he had made one! I was absolutely shocked when he slammed it in my face when I came in for the last appointment. He pulled the rug from under me. He says that my ‘interpretation of the symptoms in a broader sense may be skewed’ which is utter garbage and a completely meaningless sentence. How can anyone ‘misinterpret’ their body’s pain signals?? It’s just pain, not a cognitive concept that you can turn around in your head. I already know it’s not fatal so what else is there to know about it? To some extent I want to avoid it, like everyone does, but I also recognise that it’s usually unavoidable. Fatigue may be a bit more dubious because many things can increase tiredness, but I don’t think he was even referring to that. Either way, we didn’t have a discussion about the way I conduct my life so it’s all assumptions anyway. In short, there is absolutely no basis for a suggestion that I’m somehow ‘interpreting’ symptoms incorrectly because I know more or less where these symptoms are coming from. I know that no thanks to doctors of course since they are so uninformative across the board, but thanks to my own initiative, self led research and self-advocacy. There is nothing wrong with this so could those motherfuckers stop pathologising it!! There is plenty of information about my chronic disorders online (Ehlers-Danlos Syndrome, fibromyalgia, hyperacusis, restless legs syndrome and more). It’s just a mixed bag of awful bodily responses to basic physiological anomalies, and the only misinterprations that I know of are the ones that health professionals imposed on me before I was diagnosed with genuine somatic diseases. The comment points to a misogynistic assumption about the female body as an incomprehensible entity, as well as an assumption that women don’t understand their bodies anymore than the men do who have never even inhabited such bodies. Many control freaks don’t like that they can’t understand them so they try and micromanage them via remote control.
He also thinks poorly of my strategies or ‘methodologies’ although I would not be in this life any longer if my coping strategies were bad. I would not even have visited him in 2020 unless I was making concerted efforts to get out of the house in spite of severe hyperacusis pain and tinnitus and Covid. In fact, my actions would have been successful, had it not been for the sorry way he treated me and made me have deep regrets about my outings. He really did not know anything about my methodologies ‘in the broader sense’ since there was not enough time or space to discuss them, and so he’s just using jargon to make himself look knowledgeable.
His disdainful use of the word ‘believe’ is also noteworthy. If anyone was a believer, it was him. His education is a pile of belief based unyielding dogmas that have nothing to do with the true dynamics of the psyche or the mind. The truth is, doctors really do not understand my conditions, so why was this such an issue for him? I just said it as it is: many doctors are incompetent, but apparently this is one of the key words for detecting somatic symptoms disorder (or somatisation disorder as this dinosaur called it in accordance with an older classification)! It’s pretty clear that he started to turn against me the moment I said that doctors have a hard time with these disorders. Whatever he thinks and believes, this is nevertheless a fact. RLS, for instance, is not taught in medical school, and EDS is only briefly touched upon, if even that. Never mind hyperacusis! Oh gawd!
Of course I have some mental health issues, it goes without saying that you will have them when you have to deal with a body that’s always failing. They are secondary. This does not automatically imply a personality disorder or any other serious mental disease. What I rejected most of all was his way of turning everything into a simple anxiety fest that generates hypochondria and undefined psychosomatic symptoms. Suddenly, none of my previous diagnoses of physical disorders were real! He tried to coerce me into therapy with him. Towards the end, he appears to have changed his mind from wanting to treat insomnia to wanting to treat some kind of group of somatic disorders, whatever that’s supposed to mean, but it was all very unclear. I think I heard him correctly but he did have a difficult accent. It’s important to note that ambiguity is ace within the framework of psychiatry. It is not a real science and so it thrives on interpretation (it’s not so surprising that he talks about mine). He even shouted at me that ‘many hypochondriacs start out with a real condition’.
I hate his blatant ignorance of the physiological disorders he arrogantly claims to understand better than all the specialists combined, and the same way he lacks true insight into the psyche at the other end of the spectrum. He’s a dinosaur and the subsequent mind-body division that he advocates is so dated. But the thing I hate the most is the assumption about simplistic causation when there is only correlation.
At the mental health clinic, I was mocked for ‘believing’ I have neurological disorders (or ‘a neurochemical imbalance, as the psych put it, but it amounts to the same thing). Yet it is precisely what I do have. In his entries, Dr P vastly exaggerates the presumed mental health problems by suggesting I have a personality disorder. There was no such diagnosis. The issue shouldn’t even be in the books anymore since I now have somatic diagnoses that explain my physiological distress and the kind of depression that arises when you are chronically fatigued and in constant pain from genuine physiological illnesses!
Dr P churns out the mantra that I am too interested in my own body when I ‘should’ really be interested in my mental health. There’s implied criticism as to how ‘difficult’ I must be, I’m a bad patient, something one of the respiratory doctors at the sleep clinic was also keen to assume. The assumption seems to be that it’s all you can expect from a woman (like me?). All this despite the fact that there’s loads of medical evidence of physiological diseases in my records. Just like the psych E.M, he refers to ‘symptoms’ without actually defining them. What precise symptoms are we really talking about here?? No one knows! The strategy of ambiguity is either deliberate or unconscious, either way, it’s designed to feed into the next person’s prejudices as they will read whatever they want into the statement. The original letters from E.M were equally vague and contradictory with the aim to make the next gullible reader think there is deep meaning when there is none. It’s easy to see that male doctors communicate their contempt for female patients in between themselves in this manner, and the way they objectify the woman and her body with the way they use their words, is despicable. I’m going to be crucified for saying this outright but this is the truth. I say this as person as a higher degree in psychology, but I have also researched the topic of misogyny.
Dr P suggested that I was possibly being irrational/contradictory because I was using low dose quetiapine for sleep. While it’s true that quetiapine induces restless legs, it does calm down the catecholemines, and it thus serves a different purpose than opioids and benzodiazepines (including the non-benzodiazepine Zopiclone). He did not seem to understand that I have both restless legs syndrome and insomnia, since one doesn’t always exclude the other. This is obviously a complex neurological problem, i.e, it involves a host of neurotransmitters, hormones, proteins and enzymes. The reason I’ve continued to use a tiny dose of quetiapine (6.25-25 mg) is that I have very little else indicated for fibromyalgia that helps with the nightly wakefulness. I have to balance it with the Buprenorphine (treating side-effects with another medication is hardly unusual).
I go through a terrible nightly battle because most substances that cause sedation also aggravate the restless legs. So as soon as I get sleepy the creepy crawling and pulling begins along with a sudden cold wakefulness (and it’s actually all over the body, not just the legs). In my case, Buprenorphine is life saving as it’s the only substance for long term use that has controlled the restlessness while also lowering the volume of the tinnitus a tiny little bit. However, it does cause serious side effects such as increased nighttime wakefulness, daytime depression, sweats etc. I am keeping the dosage as low as humanly possible, i.e. 250-350 mcg per day, depending on symptom severity (if I take too much, I’m awake all night speeding, if I don’t take enough, I wake up from RLS/PLMD). I’m making superhuman efforts to avoid taking drugs that together are likely to induce serotonin syndrome. The black list for this syndrome is long and most common drugs are there. I was shocked at the psychiatrist E.M’s disdainful and bizarre report that I ‘self medicate on magnesium’ and ‘manipulate my medications’! Who even talks like that about a patient behind their back? He knew nothing about the way I take my medication, and as it happens, my conditions since menopause have been fluctuating and so my medication has also fluctuated. It needs constant adjusting, and it could still take a while before things stabilise. Doctors hate the seeming chaos of chronic illnesses but what are we to do? In this case, the doctor was just making assumption about me any way because we didn’t actually talk about any of this.
The problem with these ongoing conditions that never improve is that they associate with irrationality and femininity, and of course, because women are more prone to having them than men are, it seems to the simple male logic that female emotions are behind the creation of these symptoms. It took me a long time to wrap my head around this as I tried to imagine how the psyche was supposed to cause severe ‘symptoms’ of chronic disease. I can’t even induce a faster heart rate by thinking of it. It’s hard to believe, but many of them really do seem think that women can cause problems in their own body just by having thoughts and emotions about their body!
The fact that all the men I went to see did not care to talk about the effect menopause and HRT has had on my underlying conditions, is completely unacceptable and deeply discriminatory. Considering my age, it is the first thing they should have discussed with me. Initially, I was forced to try alternatives to drugs for RLS because I was denied opioids (low dose Buprenorphine works extremely well for most), but then I was penalised for being resourceful and trying to find ways to cut down on harmful drugs! All this started with menopause. The psych E.M also decided that I was pathologically interested in going to doctors appointments - well, no, I’m not a masochist and no, doctors are not irresistible (though clearly they see themselves as such).
That is not all, E.M’s letters are downright hostile, inaccurate and a completely travesty of compassionate care. The worst part is that it’s easy to see, but no one wants to admit it, presumably because it suits their agenda, which is to support patriarchal value systems and the misogyny that comes with them. I’m just trying my best to survive and take responsibility for my health even though I would really prefer to give up. Who honestly wants to live with all these challenges, all to the sound of constant torturous cacophony in the ears from the H&T (hyperacusis and tinnitus)? The only thing keeping me here is Finnish sisu because I won’t give the bastards the satisfaction of finishing me off. But - if I don’t sleep then I don’t live, it’s that simple.
I’m deeply concerned about the pseudo-psychological jargon that’s rife amongst health practitioners who are not trained in psychology or psychiatry. How is it that so many doctors think they understand something about their patient’s mental health and voice their opinions so loudly, yet know absolutely nothing whatsoever about chronic health conditions such as Ehlers-Danlos Syndrome or Willis-Ekbom Disease?
Everyone seems to think that anxiety is self-explanatory, when it really is not. I can’t say I myself truly understand what anxiety is supposed to mean, even though I should do since the psych is convinced I have ‘enduring anxiety’. I guess I’m not self-aware enough, haha… The psychologisation of pain and fatigue amongst medical practitioners is just as bad as the psychiatrist quack thinking he understands chronic physiological illnesses while he meddles in genuine medicine by labelling people like me hypochondriacs after just two short appointments. He knew very well the concept is hurtful, and he should also have known that the criteria can’t be applied to me. As soon as I opened my mouth and started to complain about medical gaslighting, he decided to stamp the diagnosis ‘somatoform disorder’ on my forehead and claim that I ‘admitted to somatising my anxiety’. I certainly did not! The psych did not for a moment consider that diagnoses of hEDS and refractory WED/RLS are in themselves proof of severe disabilities (my conditions are not just a bit of amusing double jointedness or a bit of innocent leg kicking or a bit of beeping in the ears!). He even denied that I have neurological issues and mocked me upfront! It’s extremely concerning that a practitioner who claims to be trained as psychiatrist throws around wild assumptions about physiological disorders they have no genuine understanding of. This problem alone should be sufficient reason to invalidate prejudiced psychiatric diagnoses that involve symptoms of physical disease. There is simply no solid research in support of the criteria for diagnoses such as ‘somatoform disorder’ and the like (see this article).
This above passage from one of the letters by E.M is bizarre.
I certainly never claimed to somatise my anxiety, it’s a blatant lie. He didn’t believe that I suffered from side-effects from the partial dopamine agonist he tried me on, and told me the symptoms were due to nocebo effect! He could not fathom that a small amount (sub-clinical, according to him) was having an effect on me. I’d like to point out that women tolerate medication differently than men and that some of us really do have problems with the metabolisation of certain drugs. This is really not so surprising. It could be down to a heme protein that connects to the oxidation process, for instance. Again he uses the word ‘believes’ in a derogatory manner (‘she continues to hold the
belief that what she is experiencing is due to a genuine neurochemical imbalance’). I told him upfront that he didn’t know anything about neurology, and he retorted that he is a psychiatrist, not a neurologist! Funny how confident he was despite his lack of competence… over confidence in your abilities is called the Danning-Kruger effect, by the way.
In this passage E.M also claims that I asked for dopamine agonists (DA’s) but this is not true at all. I went there for an ADHD assessment but he refused to offer me one. I had also come to the conclusion that amphetamines would not suit me even if I did have the ADHD diagnosis. I had already tried one DA for RLS (restless legs syndrome) called Ropinirole, and it had caused severe side effects, not ‘moderate’ as suggested in my notes. I was passing out on the toilet while simultaneously vomiting and suffering from a diarrhoea attack. In another note, a doctor claims that I get nightmares from Ropinirole. I had given them a long list of symptoms and nightmares was the last one. To refer only to one psychological symptom in favour of all the physiological ones, is another misogynistic strategy.
As I said, DA’s are not even recommended for RLS by the experts anymore. The psych just did not listen to anything I tried to say, he talked over me and tried to get at me with his simplistic assumptions that left no room for discussions. One of the worst things he did was to attempt to explain away the side effects from the drug he tried me on in an underhanded sort of way by fabricating a story about how I had ‘admitted to somatising my anxiety’! In other words, he totally invalidated my experience of serious side effects by blaming it all on my psyche. That’s a whole lot of serious side effects that should cause some genuine concern. They were obviously somewhat mild at that point because I was using a tiny dose. And I would like to underline that I did not experience any kind of anxiety during this time. He also suggested that ‘at the same time’ I was stupid enough to believe my own stories about the reality of my symptoms. He tried to make it sound as if I was somehow in some state of cognitive dissonance the whole way through. The invention of such a narrative is the manipulation of the truth in support of the implicit biases and the agenda he was trying to push, and that’s gaslighting supreme. It’s an excellent example of misogynistic behaviour.
We chronically ill patients (usually women) are bombarded with dismissive and psychologising words and phrases left, right and centre by people who don’t have a clue what any of it really means in the deeper sense. Especially the men who can’t think for themselves like to parrot the same trope about women’s hysteria: ‘she’s way too interested in [her] biology and not enough in her mental health’, which apparently has something to do with presumed ‘anxiety about symptoms’ though nothing is actually explained: open ended explanations leave room for the next person’s prejudices.
The above passage was part of the first letter, and it outlines the concerns I was trying to bring to the table. They are perfectly valid and sensible, and grounded in genuine diagnoses. These conditions cover a wide range of symptoms and I really don’t need any further diagnoses. The search for an ADHD diagnosis was certainly not unreasonable, but I could have done without it. Sadly, because of the way I was treated, I will regret this idea for as long as I live. I was led to believe that E.M was on my side when he referred to other clients with chronic diseases. I simply assumed he was including me when he talked about them as a group. The weird thing is that E.M completely ignored all those issues after the second appointment when I complained about medical gaslighting. In that moment, he turned against me by suggesting that it’s really all, or mostly, in my head.
The above passage from the DSM-5 recommends that the practitioner should acknowledge the pain and suffering that comes from fibromyalgia and/or IBS and not automatically assume that the patient is prone to ‘somatisation’. Why the
descriptors for somatic symptom disorder are
also a close match for fibromyalgia is confusing and very disturbing. Be it as it may, E.M decided to ignore my diagnoses of fibromyalgia, IBS, hEDS, RLS, insomnia, hyperacusis, degenerative disc’s disease, osteoarthritis and more. He started out collecting some of them and pretended to be on the same page with me, but then made a U-turn and denied that my conditions caused all the varied and persistent symptoms that I have. All of my diagnoses (and yes, there’s quite a few of them!) explain symptoms of enduring pain, fatigue and insomnia that have lasted over six months. There is simply no room for any form ‘somatisation’, and to suggest otherwise, is grossly discriminatory and degrading. It is a violation of my human right to my own body and mind.
In addition, I’m an emancipated and educated white woman from the most egalitarian society on Earth, an almost alien ‘other’ in relation to the doctor, whose accent betrayed him as South Asian. Men from Pakistan are not exactly known for their kindness towards women since their cultural bias directs them to view women as something they should possess. I should not have been matched with such a person to begin with, and this is the fault of the NHS and its failure to provide adequate mental health services. If E.M really believes in the somatic symptom disorder but wants to be a renegade psychiatrist who smashes the criteria in favour of his personal version of the disorder, then there is something deeply, deeply wrong with the picture. If he also hold the attitude that he is free to harm the patient in the name of a diagnosis, then things are beyond horrific. And lastly, if the psychiatrist doesn’t understand that his words are deeply stigmatising and hurtful, then he should obviously not be in the psychiatric profession to begin with. This is anti-psychology at its worst.
They used to lock up women and disabled people over trivial matters. Just over a hundred years ago, a husband or a brother could get a woman sectioned because it was convenient, and the doctors played along with this because they got some kind of perverted enjoyment out of the idea. Even if this kind of thing happens less frequently now, the hatred of women is still persists. Make no mistake: this hatred has to find an outlet, and it will find new and insidious ways of pinning women down and humiliating them. The manner by which E.M turned against me with hostile and inflammatory phrasing must be symptomatic of a deeper issue. There is little doubt that the source of this antagonism is implicit stereotyping, and more specifically, misogyny. This becomes even clearer when you note the consequences his opinion has had on other susceptible male doctors. Harming disabled women is about as sick and twisted as you can get, and as I will explain, it is all part and parcel of a global culture of toxic masculinity.
There is no doubt that E.M was a manipulator who tried to lull me into security with his dopey eyes and artificial interest in me that was only skin deep. At first, he appeared to be half asleep. He spent valuable time pulling a long story about some mentally ill patient that I struggled to follow. Cult leaders who manipulate people are often good story tellers, so his meagre attempt could be seen as part and parcel of his attempt to manipulate me. Apparently the patient in the story had been looking for answers and visited many doctors. This also leads me to believe that E.M had decided on my diagnosis as an attention seeking, deluded woman already before he’d met me in clinic. This explains why there was no genuine assessment, just some general farting about. During the second appointment he suddenly came to life and started to interrogate me about my sleep. I cannot but wonder if this was a deliberate strategy to get me off balance, because I naturally responded with nervousness, to which he then responded by reporting that I showed signs of ‘enduring anxiety’.
From E.M’s letter one gets the impression that the presumed anxiety automatically, directly and without question ‘must’ lead to ‘somatisation’ (presumably, this would be true for anyone). This is a ridiculous misappropriation of anxiety. If anxiety does occur in a person with chronic illness, then it is likely to arise as a secondary co-morbid issue rather than the other way around. A chronically ill person could well experience concern in regard to their future health prognosis, and they could get worse over time, but this not proof of a direct connection between worry and an increase in symptoms. Those symptoms could increase due to the progression of the disease and other factors such as practical difficulties in accommodating for the disabilities, for instance. A person with cancer is likely to worry about recurrence, but this doesn’t automatically mean that they get symptoms pertaining to cancer or even cause a recurrence of cancer itself. In the case of fibromyalgia, some health professionals believe that the reassurance that you’re not going to die should quench any worries. Yet life with a painful condition that doesn’t kill you can be extremely stressful in the long term. Stress has a way of grinding you down and this can have an adverse effect on the immune system.
At the same time, many people with chronic conditions also develop remarkable resilience. Disability is not a simple issue and it should not be caricatured. In my opinion, questionnaires aimed at evaluating stress and anxiety are simply too stereotypical to be of any greater use in the determination of overall life quality. It is all too easy to try and determine causation where there is none. Do we even all understand words the same way? To a persona with chronic illness, ‘a serious health condition’ could conjure up a very different mental image to that of a person with normal health. Their responses to questions involving such words are likely to be tainted by their personal experiences of their conditions and the way they have been perceived by others.
While it should be common sense, the idea that chronic illness teaches people about life saving strategies seems to elude so many health practitioners who are biased into thinking that women are naturally overly emotional, overly imaginative, overly worried and prone to hysteria. (Some men who are unfortunate enough to suffer from a chronic illness will be accused of male hysteria). All this then makes the patient into a ‘difficult case’, someone that has to be managed in a ‘masculine way’, with stern reasoning and harsh actions. It’s like old fashioned parenting. In fact, a male respiratory doctor from the sleep clinic discussed me along these lines in his letter to my GP. He thought I needed to toss my sleep medication but ‘it was going to be very difficult haha’. It goes without saying that I can’t just toss that medication. I have genuine insomnia and I need medication for it, but this was simply not an option in this doctor’s mind once we had ruled out sleep apnoea.
I have heard people say that their psychotropic medications have been taken away from them even without replacements and the option of tapering. It’s obvious that a kind, empathetic approach is very different from a harsh parenting type approach, and that the patient’s quality of life will be greatly enhanced when there is validation of their worries. The clinicians should be able to put themselves in the patient’s shoes but they rarely want to do that, and the detachment is thus likely to give rise to negative descriptors that have a negative effect on the patient and their trust in health care. I feel that focus should be put on the determination of quality of life and the supporting of the patient’s belief in themselves instead of this incessant jumping on patients for being ‘excessively’ worried. I really don’t think clinicians understand that most people with chronic pain actively try and ignore their pain in order to have some kind of life at all. Each condition comes with its own set of challenges. I think coping strategies are a very individual thing and that the idea that some random healthy man or woman should have an opinion on them, is just weird. If it was up to me, patronising words and concepts such as ‘dysfunctional beliefs’ or ‘maladaptive strategies’ should not be used at all. You can’t judge thoughts as maladaptive until they have been proven wrong, and at that point, CBT is probably no longer needed. Some people may find CBT helpful in managing their fears and expectations, but I remain sceptical.
According to CBT models of HA [health anxiety], four underlying dysfunctional beliefs can lead to HA: one’s perception of the possibility of experiencing an illness, one’s perception of the consequences of experiencing an illness, one’s perception of the inability to cope with an illness, and one’s perception of the lack of external resources (e.g., availability of medical treatment). These four dysfunctional beliefs will, in turn, negatively influence the interpretation of bodily variations through four cognitive and behavioral processes: increase selective focus on health-related beliefs, increase in somatic monitoring and responses, usage of safety-seeking strategies (i.e., maladaptive coping strategies such as reassurance-seeking or excessive body checking), and increase in affective responses. [link]
Either, I must have offended E.M’s fragile male sensibilities, or then, the whole thing was strategically orchestrated from the start. Someone might say he was just being a doctor the way he had been taught, but there was such an obvious lack of empathy that there is no way his ‘professional opinion’ as he called it, wasn’t tainted with implicit bias. At any rate, his training would not have been entirely objective, and it would have required intelligence he clearly didn’t have to overrule whatever indoctrination he was subjected to early on. Unfortunately, a lot of clinicians hold their training the highest regard and do not think to question dated views. This point coincided with my admission that doctors seldom treated me well because of the insomnia. It is also at this point that the tone in his letters changes from neutral and accommodating to hostile and even vindictive. I do not think it’s a coincidence.
How I wish I had listened to my instinct and never gone back. I wish I had been warned not to be so naive. The worst part is that I fell for his manipulation in spite of my gut feeling. He offered me a carrot in the form of a medication. In retrospect, I really think it was a way of luring me in so that he could exercise more power over me. Either way, this particular medication was a very strange choice in the context of my insomnia because it was a stimulant rather than a sedative. I stupidly accepted because I’d happened to hear rumours that it could help people with chronic fatigue. I therefore went back for the prescription. Then when the medication didn’t work, I was quickly made to look like an idiot.
You can see how at that point, E.M’s letters became antagonistic, and he started to ramble and contradict himself. I was not aware of any discussion about medications other than that he seemed to think I had said something about not tolerating noradrenergic agonists. I never asked for any medications at all because my prime objective was simply to discuss the possibility of ADHD, and I didn’t think my poor general health would allow me to use something as strong as an amphetamine. I had prior experience of a dopamine agonist but not of any noradrenergic agonists. But in the end, there was no discussion about ADHD at all and not really about anything else either, for that matter. I don’t know what treatments he thought I had researched, and we certainly didn’t discuss any other than the ‘therapy’ that he tried to coerce me into having with him. It’s almost as if he actively tried to avoid discussing the topic I had gone to see him about! I doubt he knew anything whatsoever about ADHD. I get the feeling he was just pretending to be a professional.
In his third letter, E.M then went on to talking about my ‘symptoms’ without actually defining them at all. This is so bizarre. He says ‘they’ are pathological because ‘they’ have persisted for a long time. Well duh. ‘They’ are symptoms of chronic diseases! Come on! He was annoyed that I ‘believed’ I had conditions that apparently he didn’t believe I had… this 180 degree U-turn is so weird and so hostile.
I asked the Powys Teaching Health Board to explain the reasoning in the letters to me as they insisted the letters ‘must’ be part of my medical history, but the bastards blankly refused. I tried to explain my point of view and also explain that the whole thing was having a horrid effect on my mental health and that I had suffered from suicidal ideation because of it, but they didn’t care. Principle was more important to them than a patient’s wellbeing. The truth, oh, forget it. They have thus forced me to live with a deeply stigmatising diagnosis I don’t agree with: ‘This is who we decide you are and it doesn’t matter whether you like it or not, whether it’s helpful, or whether it’s even true!’ I learnt that there is a united front against any accusations about medical gaslighting, and all of this is very far removed from any hippocratic oaths they pretend to have taken. This imposition is pointless cruelty.
It has been said that gaslighting occurs in intimate relationships, and sadly, the relationship with a doctor is a pretty intimate affair. We are co-dependent protagonists who have not chosen to participate in a relational drama that asks for blind trust in a complete stranger. The abuse we receive when our trust is mishandled is no different from that of any other intimate relationship. In the case of doctor E.M, I actually chose to attend the clinic and open up in trust, and I hate myself for it. This is one of the worst experiences I’ve ever had, it’s a mental rape, and the fact that I brought it upon myself makes it even more acute. The fact that I decided to explore the possibility of adult ADHD with such optimism was a sign I was really in a good mental state at the time, but he changed all that, and I am now a nervous wreck because of him and the ones who followed in his footsteps. I think it’s true that optimism can lead to carelessness. I also think that the high dose of HRT I was on at the time acted as a stimulant. I believe it increased my dopamine and caused a low level of impulse control disorder. This would explain a general sense of optimism, the money I was spending on shopping at night, and an uncritical belief that opening up to a mental health practitioner was a safe thing to do (in other words, my risk assessment was out the window). I can never get closure because no one will help make it right, and I can never trust again.
In clinic, E.M suggested that I was overly interested in biology, as he called it. On the one hand, it would seem that I, as a woman, am not allowed to take an interest in biology because science is for men only, on the other, I am not allowed to take an interest in my own body, because only a man can know anything about it! This kind of talk is sexist, deeply discriminatory, and extremely draining and demoralising, and it leaves us in ruins. Anxiety and depression can be a secondary problem for people with EDS but it is not a simplistic problem at all. Very often, the problems are due to pseudo-anxiety brought on by dysautonomia.
On the other hand, ‘somatoform whatever’ is not even a real thing! The criteria look spookily like the symptoms of fibromyalgia, so how are you supposed to differentiate between the two? The diagnosis is simply a tool in the patriarchal toolbox for the systemic oppression of women (or people who display feminine symptoms and qualities such as chronic illness, vulnerability and emotionality). There is a gender health gap, and it is a serious matter. The sorry state of affairs is that all they need is to pin you down as someone who believes their symptoms are more serious than the doctors think. There are certain male centred ableist norms that we must all adhere to or be damned. Such a norm could be the idea that you bring on your own disease if you focus on it,, or the idea that other externally generated sensory experiences cannot harm you. If you say they do, then you’re exaggerating. You’re hysterical.
It’s unbelievable that in this day and age, there are doctors who seem to fully embrace the idea that if women could just stop focusing on their symptoms of pain then the pain would magically go away! It’s reminiscent of New Age belief systems and other ideologies that focus on the presumed power of positive thinking, and that’s because such medicine centred belief systems are no different than religious ideologies. They have no connection with observable reality at all. The same doctors who are so keen to embrace somatoform disorder (or somatic symptom disorder as it is renamed) and functional neurological disorder (FND), probably also believe in Santa Claus and unicorns. But I’d venture a guess, that they don’t believe in menopause, fibromyalgia and M.E.
Another example of gaslighting from my own life is the visit to an audiologist who told me that sounds can’t hurt me. Obviously a sound did hurt me since I ended up with hyperacusis because of it, so this line of reasoning is flawed to begin with. She tried to get me to admit to having had a fear of sound prior to the onset of the disorder. To her, the fact that I had ear plugs in my car was proof of her theory! Thankfully she backed off in the end because I was able to articulate the physical cause of the disorder. I later noticed that the notes contained an entry that specifically denied a connection to any mental health issue. The fact that there was such a reference to start with, already suggests a strong bias within audiology towards psychiatric disorders as a plausible root cause of this particular type of hearing impairment. She wouldn’t offer sound therapy as long as I wore ear plugs. She tried to gaslight me into believing that a life conducted in silence is bad for the ears although there is never any silence due to the screaming tinnitus. The theory that ear plugs make the condition worse stands on very shaky grounds and has been the cause of suicides because people with serious hyperacusis who tried to tough it out without protection got worse, and worse, and worse… I asked what she expects from autistic people. She said oh yes she’d just ask them not to wear ear protection and just get on with it! This reminds me a lot of GET therapy within the context of M.E. The hyperacusis community all agree that exposing painful ears to sound is not a good idea, but no one listens to us. Doctors also like to talk in terms of pain that ‘seems’ a certain way rather than pain that just ‘is’. Apparently pain is all about perception blah blah blah. This is yet another subtle way of casting doubt on a patient’s interoceptive experience.
We all know that the doctors barely even listen to us at all and don’t even have much time for it, so how can they judge a patient’s subjective experience in any way whatsoever? This list on the Mayo website is scary reading for anyone with a disorder that’s marked by extreme pain and/or fatigue. Why is it so necessary to belittle people and their subjective experience? I can only think of a couple of potential ‘reasons’: a) patients should be restricted in their access to health care and benefits to save public funds, b) women (AFAB), as well as other people with feminine attributes, qualities and afflictions, should be subjugated so as to maintain the hierarchical power structure men are accustomed to. The vague aim of facilitating communication between health departments is completely lost on me as it strikes me as an entirely meaningless purpose in the bigger scheme of things.
Of course there is always the pretence that people will need psychological treatment if something is seen to interfere with their life. Any description of maladaptive behaviour is of course tenuous at best. I doubt treatment for somatic symptoms disorder or hypochondria has much bearing on anything in practice, especially since so many chronically ill people will be misdiagnosed with these so-called ‘disorders’. As long as there is a gender equality gap, these signs of systemic oppression will continue to manifest.
E.M’s use of inflammatory words such as ‘manipulates’ is also a give away. This to me counts as a vindictive statement and it is certainly not something you’d expect to see in a compassionate context. Clearly someone who talks like this must believe that women are manipulative. Why else would he say something so disgusting and so far fetched about a vulnerable patient who’s turned to him in trust? He had absolutely no real grounds for suggesting something so vile when all I was doing was trying to treat my disorders naturally. Sadly there is no non-medical treatment for RLS. When that failed, I had to try and find a doctor who would treat the RLS in an appropriate manner, and that was the reason I was referred to neurology. ‘What will you say when the neurologist tells you there is nothing wrong with you?’ E.M asked me in his typical provocative manner. Well, obviously, they didn’t say I don’t have any neurological problems! They just twisted it into the medically unexplained travesty of a neurological disorder.
I think maybe for women, it’s very hard to imagine just how emotionally stunted many men can be. For instance, I lost my whole family within the time span of five years. That’s my husband whom I found dead in bed, my mother who died of cancer, and my father who died of old age, far away from me in Finland. In addition, I had to end the lives of three cats (although not all at once). I have no family left now. In that time, one doctor tried to kill me while a comedian ruined my life by busting my ears so I can never enjoy peace and quiet, ever, or even get out of the house anymore. And all the psych has to say is this:
He copied and pasted these facts from the letter I sent ahead of the first appointment. There were no words of empathy. There were no questions about how I’m coping. In fact, I had revealed that I suffered from suicidal ideation when I was younger, and I do believe a compassionate practitioner might have taken a kind and cautious approach. Instead, he verbally attacked me and when I became nervous, he quickly decided that I’m ‘just anxious’. In the context of all the tragedies I’ve muddled through, it seems especially absurd and cold hearted to label me as ‘just a bit anxious’ and to leave it at that.
I don’t believe I’ve ever experienced a combination of ‘rapid heartbeat, heavy breathing and sweaty palms’, which are supposed to accompany anxiety. I most certainly have never had a conventional panic attack. From about age 6 or 7, I became shy, and as a young adult, I had hormonal issues that were clearly at the top of an iceberg of neurological troubles connected to Ehlers-Danlos Syndrome. I felt overwhelmed with some kind of crippling and tense anxiety like depressive mental state that was channelled into an eating disorder, but this was relieved when I learned to relax, and eventually the disorder disappeared. As I got older, the intense abdominal pain improved somewhat. I suspect that these types of issues are strongly correlated with age. They are typically put down as the psychosomatic symptoms of a stressed young woman but I think this is a stereotype. I’m sure there is a deeper neurological truth behind problems with the gut-brain axis.
Despite all this, people have often thought of me as a fairly calm and composed individual. I think you can give the impression of being a sensible person while still feeling that there are situations where you feel nervous because you don’t feel fully in control of them. We have to be wary of stereotypes. I do have a tendency to be hypervigilant and I seem to suffer from a fair amount of anhedonia because of a negative expectation of the future. I do feel somewhat threatened but I don’t think it’s a simple sign of anxiety. I can now see that it’s something I shouldn’t have disclosed to the psych E.M because of the way it was perceived by him as a man from a southern culture. In my opinion, none of the above conditions will automatically qualify me for anything other than a heightened sensitivity to life, and more specifically, to the condition of living in a body that has been failing me since I was ten years old. As a young person, I was terrified to see my previously healthy and strong body fail me like it did. My whole reality came crashing down while I slipped deeper into the abyss of the diseases no one was able to pin point at the time. I was alone with all that pain, fatigue and stiffness and just had to get on with life somehow. That alone could serve as a basis for anxiety but really I don’t think anxiety was the cause of my overall decline in mental health. Chronic symptoms are problems you have to manage all the time, around the clock, so how can this attention be excessive?
I can’t even imagine how I could negatively ‘interpret’ symptoms that are just an ongoing saga of imposed misery and only temporarily and vaguely relieved when I exercise or lie on my spiky acu-mat. The word ‘interpret’ is another ambiguous word that’s easily employed by psychiatrists who prefer to be as unspecific as possible. Meanwhile, I’m just trying to survive and not fall prey to utter despair. I used to think the problems with my body were psychosomatic and that I could cure them, but this interpretation was entirely based on disinformation and the lack of support from the environment. Of course in reality, there was very little I could do. The last thing I need to hear is that I’m too stupid to understand my own best interest, and that’s precisely what I’m still hearing at the advanced age of 59! I hope it is obvious by now how cruel health practitioners can be when they fail to offer appropriate support while also pulling the rug from underneath. They are the ones who are quick to ‘interpret’ innocuous exclamations of physical malaise. I thought my diagnoses would protect me from these people, but they didn’t.
In addition, I don’t think I’ve ever been avoidant in any way whatsoever though, quite the opposite in fact. For instance, I was brave enough to go and study abroad, which was no mean feat. I started to drive a car in France and even drove through Paris. I don’t think a deeply anxious person would do that. I always challenged my fears. I feel the fear and I do it anyway. That’s not the definition of anxiety. Because of my resilience, I now live abroad. Because of my resilience, I’m still alive. Even now with the crippling hyperacusis, I have put myself in situations where sound could cause permanent deterioration, for example when my tooth fillings were exchanged for new ones. At the time Covid, was also still considered a threat. I do avoid going out of the house but that’s because it’s very taxing in the general sense, and I’m tired of the pain it causes and how impossible it is to enjoy anything at all when tinnitus is screaming in my ears. At night my head is empty and I have never had racing thoughts. Although I thought my insomnia started due to the stress of heartache, I now question whether it really has anything at all to do with any kind of anxiety. I think it’s more likely to be a symptom of the disease progression of hEDS and fibromyalgia, and probably also due to counterproductive pharmacological interventions (SSRIs). Correlation should not be confused with causation. So ‘enduring anxiety’ just doesn’t sit well with me at all. Things are clearly way more complex than that, and not just in a bad way. I’m not a one dimensional person.
Humans are not supposed to act like simple minded robots in ways that so-called ‘experts’ can predict and control. Many psychiatrists seem to hold the view that people who don’t fit into little boxes are renegades that must be chastised! Perhaps they equate creativity with madness. I do know many of them believe that trans people are just body dysmorphic, and don’t like that kind of ambiguity. There’s something deeply worrying about this trend, which is so very obvious from the DSM-5. I’m not saying all psychiatrists are rotten, but I do think very many of them are deeply deluded individuals who are effectively in denial of the harm they are causing people due to their own lack of self-awareness. On the other hand, there is always the possibility that a practitioner is acting out their own personality disorder, for instance narcissism, in clinic. There are many reports of abuse of mental health patients, so there must be many more cases that are never reported. I thought E.M acted like a narcissist. If anyone was not in touch with their inner self, it was him. He was a mere robot with absolutely zero insight into the human psyche. That’s really scary. I’d sooner put my trust in AI than in this prat.
Have a look at the anxiety questionnaire that’s globally used to assess an individual’s level of concern. I volunteered to fill it in during the pandemic and it really got on my nerves. How can you respond truthfully when you feel overwhelmed by physical symptoms? For instance, if you suffer from restless legs syndrome then you could easily feel restless all day long but it wouldn’t be psychogenic. Personally, I don’t understand what it means to be ‘so restless you can’t sit still’. While I do have RLS, it doesn’t make me get up from a resting position at any point during the day or night. In addition, you’re supposed to evaluate the number of days you experience these signs of anxiety in a week. What if these concerns fluctuate throughout the day? All in all, these questionnaires simply don’t consider the impact of chronic diseases on a person’s life experience. I also think that open ended questions are very hard to respond to because I’m usually worried about something specific, and so it tends to come and go depending on my life situation. And what does irritability have to do with anxiety? What if I was irritable because I was in pain, or abused? If I was asked to fill this in for the purpose of evaluating my anxiety, then I would probably purposely give myself low scores. Not because I would want to trick the evaluation but because I don’t understand the questions and don’t believe they match my true life experience. I think the questionnaire is extremely poor at evaluating anything at all because it’s so easy to interpret the answers any way you like. Unfortunately, as I have said elsewhere, I find all such questionnaires very hard to respond to for the very same reason.
As a direct consequence of this presumed ‘enduring’ anxiety that was never properly defined (there are different types of anxiety such as GAD, social anxiety or phobias), I was deemed an attention seeking hypochondriac who is not in control of her mind and body. Just like that, without further explanations. How crazy is that? Genuine hypochondria is also extremely rare and not the same as ‘somatisation’, so the use of the word in clinic was clearly designed to upset me. I’m an artist with several degrees that involve insights into the human mind, including a Master’s in psychology, yet some nameless bloke from Pakistan thinks I’m blind to my own inner thoughts and feelings and that my physical problems just can’t be real. By virtue of being the ‘doctor’, he puts himself above me in this regard. Not only does he believe he is more aware of his unconscious than I am aware of mine, he also claims he is aware of my unconscious! [Insert image of peacock ruffling its feathers]. So he’s conscious and self-aware, while I am not. Oh come on! Have we seen enough of this parody already? You couldn’t make it up even if you tried. It’s pathetic.
The thing is that the unconscious exists, but it doesn’t give rise to random, excruciatingly painful physical symptoms. That’s a way of appropriating the unconscious with an agency no one has ever confirmed. In order to justify such a view, you would have to examine the contents of the unconscious, which is obviously impossible to do unless you inspect a person’s inner life through their dreams, art and so on. Even then, it’s very difficult to make the right interpretations. You would have to match the contents with the symptoms you’re referring to and see if the connection makes sense. It’s very easy to jump to conclusions because you want the connection to exist, not because it really does. There is a lot to unpick here, and I can’t go into it all, but there are reasons to question the whole idea that thoughts and emotions can exist in an unconscious form.
On the other hand, you can certainly have unconscious biases. We all act out the attitudes we have been indoctrinated with, and we are called throughout our lives to check them and rectify them in case they are not serving us well. These biases can thus easily be observed empirically through a person’s talk and actions. How aware of these biases are they? These biases will directly affect the person’s life circumstances and relationships and so on. Now the really weird thing is that the word ‘unconscious’ (as either a verb or a noun) is not indexed in the DSM-5 at all. Concepts such as ‘misogyny’ or ‘implicit bias/prejudice’ are not in there, either. There is, however, an awful lot about insomnia, sleep apnoea, restless legs syndrome and other organic diseases. I find it worrying that psychiatrists talk left and right about someone’s unconscious this and that without checking their own biases first. They should question whether they really know what they are talking about before they impose their views on the patient. Alas… people don’t do that, do they.
Humiliation is key in this context, and that is something men have been keen to subject women and other subjugated peoples to since the dawn of time. Through a kind of mental rape that was particularly insidious because of the skewed power balance, that idiot E.M literally tried to break my spirit. He almost succeeded, and I’m still reeling, wondering where to go next. Until those letters are gone, I cannot get the idiot out of my life. The worst was not the experience itself, but the consequences that I’m unable to contain. My reputation is ruined. In this case, it’s my reputation as a respectable female patient, but it could just as well be my reputation as a respectable woman in a different sense. I hope this analogy is crystal clear.
I can’t speak for everyone and maybe there are people out there who find this diagnosis helpful, but in my opinion it’s neither innocuous nor benevolent. Who can accurately judge whether or not a patient has ‘excessive thoughts and feelings in relation to their symptoms’ and whether or not these disproportionate in relation to their specific environment and health concerns? You would have to live with a person in order to make such an assessment. It’s the most ridiculously ambiguous diagnostic criterion I’ve ever come across. The scary thing is that the supporters of this diagnosis actually expect patients to get angry about it as if that’s part of the psychopathology rather than the expression of genuine concern! It’s just too easy to refer to a scientifically unverifiable ‘unconscious mind’ and call people deluded for not being aware of the thoughts and feelings that come from this unconscious region. To make it sound more scientific, they might refer to some misfiring neurons in the brain. That way, they can always deny the patient their reality. These kinds of mind games are meant to trap the patient. When the patients protest, they just carry on with the same narrative and get the poor sods to shut up that way. This is gaslighting supreme.
So in other words, as soon as you start talking about your health in emotional terms, some cold blooded bloke will put it down to hysteria. I’m a lively person and I will usually express myself in a lively way. However, even if you’re just tired and a bit wound up like I was when I went to the neurology department for a discussion about restless legs syndrome, you can still be labelled as ‘anxious about symptoms’ and get a FND diagnosis. Perhaps like me, you’ll eventually get a letter with the patronising explanation that I needed to be reassured that my pathology was non-sinister. WTF? It is also quite possible that people who have suffered with chronic illnesses since childhood talk about their symptoms in a detached way that doesn’t reflect the severity of the conditions they have. This could also lead to practitioners not taking them seriously. Besides, research has shown that depressed people tend to have a more realistic approach to life than optimistic ones. So once again you’re damned if you do and damned if you don’t.
Personally, I’m not even a particularly emotional person but I do get angry and upset when I’m treated with disdain. That’s precisely the sort of emotional expression these vultures are on the lookout for. Alternatively, all they see is a woman with multiple health problems and apparently it’s enough for them to decide that she must be a ‘typical deluded woman’ who doesn’t know her own mind. They know very well that other doctors will get hooked without understanding the problems with these diagnoses. I, for example, have plenty of diagnoses to explain all my symptoms with, but how can I explain that this should disqualify me as suffering from somatic symptoms disorder or FND when they do not even lend me an ear? All they care is that I have one or two diagnoses that describe me as a hysterical patient who doesn’t know her own body and mind. When I complained, the psych had the audacity to say that he doesn’t believe in labels! So what does he call somatisation disorder, which he was so eager to stamp on my forehead, or hypochondria, which is how he described me in a shouty voice!? He was so full of shit. These are labels galore.
This type of diagnosis, which has been very controversial, is also carefully crafted to make you feel stupid and infantilised. You are quite literally being called a stupid, attention seeking hypochondriac. This is a covert language that hides a more sinister truth. I think it’s very important to recognise that this is no different than being called a slut. The deeper meaning is that you’re a deluded, clingy female who will expose everything about the intimate side of their lives in order to get male attention (so in a sense they seem to think you’re ’spreading your legs’). Like sirens, we are trying to lure them in. Men have to employ manipulative tactics to get the women and their chaotic bodies reigned in. If that sounds sick, that’s because it is. You have to realise that many men really do think about sex a lot of the time, and I do believe Freud might have had a point about that. I noticed this when I was hanging out in some spiritual circles a few decades ago and men were talking about how difficult it was to contain their sexual impulses. The psychiatrists behind the DSM who think other practitioners can handle a poorly defined diagnosis like somatisation disorder (1994) or somatic symptom disorder (SSD, 2013), seem to have a lot of faith in humanity. Of course this strikes me as highly unrealistic. Ironically, psychiatrists do seem to nurture the somatic symptom disorder like a little baby and they protect it with an assault of verbose explanations that read mostly as word salad (c.f. the description of persistent physical symptoms in The Lancet). It’s ironic that fibromyalgia has often been patronised as an unhelpful diagnosis when clinicians seem more than happy to embrace somatic symptom disorder as a helpful one! I have also found out the hard way that it’s really difficult to get a diagnosis of an organic disease but really, really easy to get one for hysteria! Implicit bias, much!
I would argue that the psychologisation of normal human reactions and strategies through reworded classifications in the DSM-5 from 2013 forms part of the misogynistic agenda that pushes the objectification of vulnerable human beings and women in particular. It’s a modern day witch hunt. Some sensible professionals tried to stop it, but couldn’t. It is quite clear from the garbled arguments surrounding the inclusion of these types of diagnoses in the DSM-5 what a horrible, prejudiced and confusing mess it is. I simply don’t understand the reasoning and the studies that are supposed to back them up, and I don’t think I’m the only one who finds it all overwhelmingly abstruse. It also goes without saying that diagnoses that are hard to either prove or disprove are based on quackery and should not appear in a medical setting. There is nothing as stressful as trying to disprove an opinion that’s backed with pretend authority because the practitioner has a degree in something. An opinion is not the same as objective truth. But this is how psychiatry tries to ensnare people, and it’s manipulative. I can’t help but wonder if men are getting desperate. The emancipation of women is not to everyone’s taste.
It’s not surprising to find that the majority of the contributors to this modern day bible were men. Traditionally, men do not like chaos. They spend an excessive amount of time compartmentalising reality and its inhabitants in order to control it all effectively. It should be obvious why psychiatry has become a religious order that thrives on gender stereotypes and the pathologisation of normality. The idea that we’re not allowed to just be human and make minor mistakes while we grow as human beings, should act as a great big red flag. Something’s seriously wrong with the picture. I’ve thought about this a lot: E.M bastardised my life by simplifying complex events and trying to make it look like shit, and this is not how I should be feeling. If you feel worse after seeing a doctor, then something’s seriously wrong with the system that’s supporting unsympathetic practitioners. I know what the presentation of my pathologies looked like to the psych, and I can see what ‘key symptoms’ he jumped on, but that is exactly the problem. He made sweeping generalisations about me based on an incomplete list of problems and a very shallow understanding of me as a person. He was an unsympathetic and deeply biased person who applied a tick box approach to my case when it really warranted a much deeper investigation. He twisted my words and lied in order to categorise me in accordance with the stereotype of a woman who can’t help herself because she is not in control of her thoughts, feelings and actions. In other words, this stereotyped person is a woman who is overwhelmed by unconscious emotions because of childhood trauma, and she runs around to different doctors in the search for answers to bodily distress that medicine doesn’t support. It’s so banal. No further evidence is needed for the diagnosis somatisation disorder or ‘somatic symptom disorder’ (SSD)!
The organic problems I suffer from are a perfect match for the diagnoses that I already have, and I should have left it at that. Unfortunately, in 2020 during the pandemic, I stupidly decided that an ADHD diagnosis could be of some additional use. E.M did not conduct an investigation into ADHD, which was very frustrating since I had focused the descriptions of my problems around this possibility and had excluded many other issues. It means that he cannot say for certain that symptoms of ADHD are not exactly that. He should also have known that such symptoms could indicate restless legs syndrome (RLS), which I told him that I have. Unfortunately, at the time I wasn’t fully educated on RLS myself.
The problem with mental health care on the NHS is the lack of time, resources and true expertise, which all contribute to a tendency to generalise and hurry things along as if the house was on fire. I’ve noticed that certain foreign doctors are especially prone to the ‘house on fire’ syndrome, as I like to call it. The practitioner at the neurology department who tried to force me into accepting FND as a diagnosis was one of them, too. I’ve now met a number of them who have harmed me in various ways. When you’re too unwell to communicate effectively and also deal with a person from a culture that’s substantially different from your own, things are more than likely to work against you as a patient. Implicit stereotyping is more likely to take place. It’s regrettable, but we are all very much a product of the culture we grew up with.
The following is an excerpt from the DSM-5 that came out in 2013, and as you can see, it could fit anyone with a difficult chronic illness that the medical field still hasn’t come to grips with fully. Weirdly enough, this is actually not what E.M diagnosed me with in 2020 as he was following the previous DSM-4 from 1994!!
My opinion as a psychologist of religions is that psychosomatic illness and ‘somatic symptom disorder’ don’t exist as factual entities and that all these unforgiving attempts at pinning people down for the somatisation of anxiety is cultish anti-science. Mainstream psychiatry has always been contentious and it continues to be so. It is, quite simply, a belief system, and not a genuine science. Based on psychological questionnaires I have filled in myself over the years (some quite voluntarily, out of curiosity), I would suggest it is based on biased studies with little room for creativity, improvisation, diversity and uniqueness. Interestingly, based on the results from a couple of those common tests, I have been told on two occasions that I fail to focus on the essentials. Yet in reality, I have been a successful scholar with very good grades even when brain fog and tiredness made it difficult for me to think with the clarity I would have liked. It makes me question what these ‘essentials’ really are from a psychiatric point of view. I think the problem is that I fail to focus on conventional ideologies, and find the psychological tests stiflingly cliched. They perpetuate really weird stereotypes about the way people are supposed to view the world and the way mental health issues affect you somatically (for instance through restlessness, which may just as well be a sign of restless legs syndrome). Very often they try and pin you down for avoidance of some kind, so for somatic symptom disorder, they’d be looking for exercise avoidance. A lot of people avoid exercise due to M.E or fibromyalgia, for instance. I don’t avoid it because exercise helps me manage my symptoms. It’s so very unfair to then try and tell me that my strategies for managing my symptoms are rubbish! I’ve also found that these tests tend to try and pin you down for some type of health anxiety. For instance, they ask leading questions such as ‘do you believe your symptoms indicate a serious disease?’.
These people do not typically understand neurology, the true nature of the psyche, or consciousness at large, and so they are not in a position to command the rest of us to believe in the fairytales they have conjured up to try and explain the mysterious forces behind our day-to-day reality. If that sounds like a religion, that’s because it is. In my opinion, there are no unconscious ‘evil emotions’ that cause unwanted and medically unexplained bodily symptoms, just as there is no demon that’s trying to lead us astray. A few centuries ago, women were thought to be possessed, and men still harbour the same belief, but in an updated form that looks more modern and polished on the outside, like a housetrained version of the unruly hunts for women to burn on stakes. Today, the holy book of psychiatry, the DSM, offers the practitioner the guidelines they need to follow without question, and with the help of some well trusted formulae, CBT, the patient’s demons can potentially be exorcised. If not, then the patient must be condemned in some way that hurts. I think the attempt to taint a patient’s reputation is quite a successful punishment for something they didn’t do. Interestingly enough, in clinic, I was also pressured to ‘confess’ to something. I.e., the practitioner found it necessary to put words in my mouth and put forward the claim that I had ‘admitted to somatising my anxiety’. By the way this strange accusation made me feel, an analogy with the concept of ‘sin’ does not seem all that far fetched. I mean that it sounds as if I had committed a sin. The analogies with past religious rituals and beliefs are spooky, but very striking when you see them. This is the problem. The problem is not the patient.
The above passage illustrates the manner in which psychiatry attempts to ensnare people with legitimate chronic illnesses such as Fibromyalgia, M.E, Long Covid and various autoimmune disorders such as Lupus and Arthritis. Even the neurological ‘findings’ that have been contributed to SSD would be identical to those of fibromyalgia and other similar diseases that associate with high stress levels and a sensitivity to stimuli that ‘shouldn’t’ cause pain. Who is to say that the body is making a mistake based on erroneous perception? This is a very sneaky way of suggesting that some people just ‘overreact’ and that’s all there is to it. I’m very critical of the simplistic notion that the body could make random mistakes. There’s nothing random about the complex workings of the body. If it was, you’d quickly be dead. Yet the body finds ways of surviving all sorts of anomalies, sometimes even without medication. On the other hand, there are conditions that do need to be alleviated so as to avoid lethal problems such as sleep deprivation, and this is where positive support from the health profession can be life saving. Without medication to treat the worsening restless legs syndrome (RLS), I could easily be dead by now.
No one goes safe and there is no question that this is a Catch-22. You will have the somatisation label stamped in your forehead whether you do have these illnesses or not, as long as you suffer from ‘something’. I tried to explain to this person E.M that hEDS is a multi-systemic condition, and I’m sure he decided that my opinion was a sign that I was prone to exaggeration. When I said I have always struggled with stress, he turned it into a problem with anxiety that could easily explain the ‘somatisation of anxiety’. When I tried to explain that not all doctors understand my conditions, it was just more proof that I was ‘somatising my anxiety’. When I explained the side-effects from a heavy psychotropic drug, they were automatically considered to have arisen due to ‘nocebo’ effect. I really don’t believe he knew anything whatsoever about the medications he was dishing out. Anyway, whatever you say will be held against you as if you’re the worst kind of criminal in a court of law. At the same time, he is not doing other professionals any favours. He sees himself as above the specialists who have diagnosed me and he also makes the psychiatric profession look utterly ridiculous. In addition, he is reinforcing the stereotype that Pakistani men don’t treat women well. How stupid can you be?
Keep in mind that the whole point is the maintenance of a hierarchy that allows those on top to decide what they believe is ‘best’ for those down below on the lower ranks. Hierarchical power structures are inherently patriarchal. The ones in power are thought to have earned their position somehow, perhaps through the genetic lottery or a degree, or just for being a man. Clout will grant them automatic immunity against any accusations of wrongdoing. There are a lot of perverted individuals who get a dopamine hit from humiliating women and disabled people. They genuinely believe their lives will improve if disabled people just die, and are even prevented from being born to begin with. Of course the truth is quite the opposite.
Considering the way chronically ill people traditionally have been treated and still are, none of this is really that surprising. It’s all part and parcel of the collective denial of long term illnesses and disabilities that can happen to anyone at any time. Physically healthy people are obviously terrified of disabilities that fail to improve over time, and they project their fear through irrational deeds that they try and explain as rational by manipulating the truth. The fact disabilities render people unable to work and contribute to society is especially loathsome to the healthier portion of society, but I would suggest it’s just an expression of deferred fear. Mental health problems are also under fire in the current political climate, and so there is no question that disabled people are subject to systemic persecution. I would warn anyone with a multi-faceted chronic illness to think twice before presenting their case in front of a psychiatrist. The chance that they will end up in a witch trial and will go down this drain is huge. They may be stuck with a trauma that will drag them down even further. Somehow I can imagine that more stress is precisely what they want to cause, as people would be more likely to become more disabled and even choose death before life (which would be a sort of covert eugenics). Ironically, Darwin himself, who came up with the theory of natural selection, suffered from severe symptoms of chronic illness.
Note that a contradiction in terms does not prevent things from escalating through a ripple effect. We can be seen both as exaggerating our symptoms and being avoidant and work shy, while at the same time, having such low quality of life because of disabilities that we should not be allowed to live. If you protest, you are told you’re just being hysterical: your neurons are misfiring and you’re seeing threat where there is none. You’re damned if you do and damned if you don’t.
These people have a god complex. They are trying to remove people’s sense of autonomy in order to exert mind control. It’s hard to believe because it’s hard for many of us to imagine the motivation for this type of behaviour, yet it is a basic motivator within supporters of right wing ideologies. This behaviour thus connects with all the latent ills of society.
The following is an excerpt from Wikipedia that illustrates the inherent injustice of the SSD diagnosis:
Somatic symptom disorder can be detected by an ambiguous and often inconsistent history of symptoms that are rarely relieved by medical treatments. Additional signs of somatic symptom disorder include interpreting normal sensations for medical ailments, avoiding physical activity, being disproportionately sensitive to medication side effects, and seeking medical care from several physicians for the same concerns.[2]
Manifestations of somatic symptom disorder are highly variable. Recurrent ailments usually begin before the age of 30; most patients have many somatic symptoms, while others only experience one. The severity may fluctuate, but symptoms rarely go away completely for long periods of time.[1] Symptoms might be specific, such as regional pain and localized sensations, or general, such as fatigue, muscle aches, and malaise.[9]
Those suffering from somatic symptom disorder experience recurring and obsessive feelings and thoughts concerning their well-being. Common examples include severe anxiety regarding potential ailments, misinterpreting normal sensations as indications of severe illness, believing that symptoms are dangerous and serious despite lacking medical basis, claiming that medical evaluations and treatment have been inadequate, fearing that engaging in physical activity will harm the body, and spending a disproportionate amount of time thinking about symptoms.
Somatic symptom disorder pertains to how an individual interprets and responds to symptoms as opposed to the symptoms themselves. Somatic symptom disorder can occur even in those who have an underlying chronic illness or medical condition. When a somatic symptom disorder coexists with another medical ailment, people overreact to the ailment's adverse effects. They may be unresponsive toward treatment or unusually sensitive to drug side effects. Those with somatic symptom disorder who also have another physical ailment may experience significant impairment that is not expected from the condition. [Wikipedia]
Stress is not the same as anxiety or a feeling of being overwhelmed, as E.M seems to have suggested when I told him I tend to feel stress. When we feel either fear or stress, or both, we have certain well documented physical responses that have persisted throughout evolution. They are designed to help us when we’re experiencing acute danger, and most people will experience the same set of symptoms. I don’t think anxiety is really different from fear. Even on the Savannah, people were anticipating danger and had to learn to deal with their fight and flight mechanisms. People can certainly amplify their fear by overthinking, but the physical signs would still be the same old. Sometimes people experience some form of shell shock that that can mess up their nervous system and cause symptoms that are specific to this sort of trauma. Unfortunately, chronic stress in childhood may cause the neural circuits to run in suboptimal ways and it could lead to chronic health conditions. Hypervigilance is certainly a real issue in society at large. But none of these states that are shared by human beings explain the modern psychiatric theory that emotions could give rise to some completely random physical symptoms without any base in a neurological disorder at all. It doesn’t add up. In my opinion, neurological changes lie behind all physical symptoms because that’s what drives the body to live, and if they are chronic and persistent, which they would need to be in order to fit the newer DSM criteria, then they are actually signs of chronic disease.
The fact that the brain may well be a prediction machine does not prove anything whatsoever about the possible connection between mind stuff and physical symptoms in the body. Our actions influence the body, not our thoughts and emotions. If they did, we would be capable of magic, and we would equally be able to cure ourselves with the mere power of the mind. Having said that, I think a lot of healthy people really do believe they have kept illness at bay with the mere power of their minds, and that kind of hubris lies at the bottom of the psychiatric belief systems.
The DSM-5 as a whole has been heavily criticized in the psychosocial medicine community for a number of reasons; for presenting a culturally biased perspective of normality; for pathologizing common human experiences; and for the promotion of first-line pharmacological treatment and overmedicalization.
The British Psychology Society expressed a major concern that “clients and the general public are negatively affected by the continued and continuous medicalization of their natural and normal responses to their experiences which demand helping responses, but which do not reflect illnesses so much as normal individual variation.”Major concerns with regards to the SSD designation have been raised due to the overlap between SSD criterion B1 (Disproportionate and persistent thoughts about the seriousness of one's symptoms) and B2 (persistently high level of anxiety about health or symptoms) and the question of when to rate thoughts, feelings, and behaviors as excessive.
I don’t know if I will ever recover from this clinican associated trauma. I’m pretty sure I have a level of PTSD because I just can’t stop thinking about the injustice that I do not have the power to reverse. There is not an human on this Earth who wouldn’t be offended if they were described as a manipulative, self-medicating, attention seeking and delusional hypochondriac, and in my case, it is most definitely not true because it cannot be true. (As a side note, he didn’t even care to make a distinction between the alleged somatic symptom disorder and hypochondria although they are supposed to be different: hypochondria and health anxiety is the unrealistic fear that you may be ill when you are not.). I was not even presented with a questionnaire. Instead it was swiftly decided that childhood adversity, my tendency to feel stress, and my sensitivity to medication, were all signs of SSD. There was no discussion about coping strategies and how I’m coping in general now that my family is gone. There was no discussion about my emotional life in the present. I was manipulated into an exchange that I was unable to control the way I imagined I was controlling it because I didn’t expect a professional to be as simple minded as he turned out to be.
As a result of an unfair ‘trial’, massive assumptions were made based on a few superficial markers, most of them some issues I had when I was young. He just ignored that the problems really were an expression of genuine health concerns (hEDS is a genetic disorder) and that this is a genuinely awful disease with lots of co-morbidities. I’ve been on permanent disability since 2002 and he didn’t even ask what I do for a living! He started out pretending to understand my conditions, only to make that U-turn. To make things even more awkward, he writes that he thinks I may have some symptoms of EDS and fibromyalgia but ‘the physical conditions she has cannot explain the severity, variety and persistence of her physical complaints’! How on earth would he know what symptoms I have unless he was psychic and an expert in all the physical diseases in the world?? What symptoms is he referring to anyway?? In what way are they varied and why can’t the illnesses explain their severity?? EDS can explain all of it. This is the worst bullshit imaginable, and it is very, very far from genuine ‘medical advice’!! The new version of DSM doesn’t even list ‘Undifferentiated Somatoform Disorder’. The new wording is somatic symptom disorder. His assessment is not even up to date! How can anyone listen to this fool?? I despair for humanity. I felt deeply objectified and robbed of my autonomy, as if I had been the victim of sexual abuse. He could just as well have grabbed my hair and told me to ‘suck this’. I believe this was a correctly identified feeling and experience of being seen as a health whore.
I find myself in the ridiculous situation of having to fight for my right to be self-aware and in charge of my own body in spite of the conditions of illness that I have to endure! In fact, I also have a right to be chronically ill like everyone else. I also have the right to be sensitive to medication side-effects and not be told that it’s a symptom of SSD (or the outdated USD as this dinosaur will have it!). Just like exercise avoidance, it’s a completely ridiculous and completely unscientific criterion that leaves tons of room for prejudice but doesn’t allow for the possibility that there really are genuine neurological disorders behind any issues with medication or exercise. Apparently studies show that a lot of people with chronic illness ‘coincidentally’ also suffer from SSD, now that is a strange coincidence! If a psychologist comes up with such ludicrously vague nonsense and doesn't understand that it will be misappropriated, then they don’t deserve their professional title. The same applies if they also believe that emancipated chronically ill patients are willing to accept subordination to such objectifying diagnoses along with the therapy they are proposing. I told E.M I was old enough to refuse life advice from a man, but I don’t think he cottoned on to my sarcasm. He was a literal person of low intelligence.
The idea that the patient is wrong if they complain is one of the most insidious and deep-laid strategies of manipulation. By claiming that perturbance and anger at this kind of fairy diagnosis on the part of the patient is just an expression of their delusion, they have set a trap like no other. There is no crueler way of shutting a person up. It’s completely dehumanising and it is against the patient’s human rights. It must be the reason I can’t get a word in and am being stonewalled at every turn. I don’t have words for how distressing it is. I keep thinking I did something wrong for things to end up this way, but of course I didn’t. It didn’t matter what I said, my voice was going to be taken away regardless. It’s a voice that is already weak because of brain fog and other disabling conditions. If I was prone to somatising my anxiety, then my voice would be disappearing! It is not, but unsurprisingly I do feel a profound hopelessness and a pressure in my chest when I try and express my point of view. Meanwhile, they are all laughing at me.
There are all sorts of interventions that could be used to try and cure me, including ECT! Apparently I also need to learn how to read my emotions correctly. Yes you’re right, my eyes are rolling out of their sockets. So then if you as a person with a chronic illness or two go along with it, you’re just sitting there being indoctrinated into believing you have a disorder you probably don’t have at all. So now we’re wasting money on pointless interventions while just brainwashing people into believing they shouldn’t trust their own minds! Does this sound like 1984 by any chance? These people are not medically trained and they cannot know more about chronic illnesses than the experts in their field! They cannot hold an opinion on illnesses they don’t understand! All this amounts to severe gaslighting.
Somatic symptom disorder has long been a contentious diagnosis because it was based solely on negative criteria, namely the absence of a medical explanation for the presenting physical problems. As a result, any person suffering from a poorly understood illness may meet the criteria for this psychological diagnosis, regardless of whether they exhibit psychiatric symptoms in the traditional sense [Wikipedia]
These people seem to lack a clear understanding of genuine psychiatric illness. In the end, despite all this injustice, I could perhaps live with the diagnosis if it were not for the dreadful consequences that this has already had on my life and the continuous stress that this is causing me. Male doctors and the people who are in charge of the medical services are enamoured with the diagnosis because it confirms their bias against chronic illnesses. Despite all the evidence of my disabilities, the majority of doctors I’ve seen since, find it necessary to pile on more emotional burdens, not less. They cherry pick and manipulate my data in order to make me look like that attention seeking health whore (I will offer an example further down). There has been very little support, mostly just endless insinuations about my presumed health anxiety. How much should sick people have to put up with? Is this how people expect it to be here in Wales? It’s a nightmare of cold blooded malpractice. Is this normal? Well, judging by the way this world is being run, there’s a lot that’s not really working for anyone. So many of us are objectified and commodified, while being squeezed into tiny boxes, because it suits someone else’s agenda.
It was obvious to me that E.M was following a very hasty tick box procedure that didn’t really serve any real purpose other than to force me into one of his little boxes, and it was absolutely disgusting to be so stereotyped. Remember that misogyny thrives on stereotypes because they are easy to manage. It gives them an illusion of control. We get severely ostracised if we don’t like the way we’re being treated. If we worry about our life issues and the state of the world, then we’re simply told we’re sick in the head! If depression and anxiety creates physical illness rather than the other way around, then the authorities can just blame people’s lack of self discipline instead of spending money on research. These are easy ways of getting rid of complex problems, and that’s what politicians like. Common sense has been thrown out the window and instead we are bombarded with a continuous stream of fake news, disinformation and complete nonsense even from the sources we are expected to trust. At the same time, the incel movement is on the rise, so no one can pretend that misogyny isn’t a real problem to contend with. I do believe that behind every inequality, there’s an issue with the power of sex over a man’s mind, and the man’s attempt to control his reality with whatever means necessary. I’m not saying sex is behind everything men do, as Freud suggested, but I do suspect it’s a motivator for power games.
So it’s quacks like E.M, R.J and the man who investigated my complaint that drag the whole medical profession down and make the NHS seem like a joke. Unfortunately, Dr P at my local surgery and many others I have dealt with are the same. Imagine my surprise and dismay when I saw the form from the DWP and realised that it was Dr P who had filled it in (well, barely filled it in, as it happens). Why was he appointed to do this? He doesn’t know anything about me for starters, and so he is not in a position to evaluate my abilities. But that’s not all: the entries are just incredibly sloppy and fraught with prejudiced errors. It was supposed to be a ‘factual report’ but he has not respected this idea with a factually correct and in depth look into my medical records. This doctor is in fact the reason I’ve had to go through the immense stress of making a court appeal to get some of my benefit back. That’s the benefit I mentioned in the beginning of my post. Here’s what the form looks like.
- Dr P’s reporting is biased: he does not know that I cannot use public transport or taxi and should not have answered in the affirmative. The answer is that I cannot. Reasons: cannot tolerate noise, cannot adequately move from and to transport, cannot carry bags or haul scooter around, cannot understand British timetables and system, cannot order taxi by telephone, taxis make me anxious, I do not have the motivation to go anywhere anyway, I’m too fatigued to make it from A to B. At the same time he admits that he doesn’t know if I’ve been threatening in public! Treatment plan ‘As per letter’ and ‘Letters from neurologist and psychiatrist explaining psychological aspect of symptoms’ are nonsensical statements because there are no such outlines or explanations.
- Dr P has listed Obsessive Compulsive Disorder as a condition of mine but I most certainly do not have such a diagnosis. Some fear of germs and dirt does not equal genuine OCD. This is another horrifying example of amateur psychology and the misappropriation of a serious mental disease. The form has asked for FACTS not BS!
- Dr P has listed Functional Neurological Disease (FND) as one of my conditions. I was diagnosed with this when the neurology practitioner failed to deal with RLS, which was the reason for my referral. I have explained to my regular GP why my health problems can be explained rationally without the need to resort to esoteric claptrap from the DSM and silly theories about the body as a computer. I do not have any of the signs for such a diagnosis, and it serves no purpose for me. The neurology department promised to rectify the letter from practitioner R.J. but never did. R.J also refused to deal with the Willis-Ekbom Disease, for which I had been referred. For no apparent reason, he then wrote in his letter that I seemed ‘anxious about my symptoms’. For someone who claimed to have been too busy to deal with RLS, it was funny how he gave himself time to explain garbage theories about misfiring neurons and some baseless concern about my health anxiety, which he was not qualified to have an opinion on. Unsurprisingly, he was another one of those trigger happy males who are overly eager to diagnose women with hysteria and suggest health anxiety even when they have no psychological qualifications. He found it necessary to add that the pathology he knew absolutely nothing about was ‘non-sinister’.
- Dr P completely ignored the severe hyperacusis and severe reactive tinnitus I suffer from although he himself noted it in my records. There are plenty of notes at the audiology department from two audiologists. Hyperacusis and reactive tinnitus is a MAJOR disability, it’s often comorbid with EDS and fibromyalgia, and it dramatically affects everything from washing and using the kitchen to communicating to travelling and coping mentally. It’s like having a glass house constantly exploding in my head while a drill or jack hammer is boring through my ear drums, and I get awful setbacks from minor sound input. I have to use aids such as ear plugs, ear defenders and noise cancelling headphones, and he saw two of those in clinic! He also saw me with the walking stick but this was not mentioned either. This is not a joke, it’s a properly diagnosed disorder for which I have even received a settlement out of court, and not some random ‘somatised’ symptom of anxiety.
- Dr P completely ignored the restless legs syndrome (WED/RLS) and PLMD which had been diagnosed by Dr Smith, the local sleep clinic and was also hinted at when I did a private in-home sleep apnoea test. RLS was the reason I met with him on that one occasion. There have been several letters about this and he also wrote a note about our discussion about it. This is a MAJOR condition with an enormous impact on my quality of life, but it’s clear he does not believe it. It’s hardly my fault doctors are not taught about it and resist education. And yes, you can have insomnia for other reasons as well, which he doesn’t seem to grasp. I’ve been bullied by doctors because of my insomnia ever since it started in 1999, and not a single one of them has understood anything about sleep (and then the psych E.M bullied me when I talked about the bullying!).
- There was no mention of my fused kyphotic lumbar spinal deformity, osteoarthritis, DD, sciatica, chronic wrist (ulnar) pain, carpal tunnel syndrome (which has since led to a stiff trigger thumb), and so on, all of which have been reviewed at RJAH over the years, also local PT. These are all major disabilities, affecting everything I do. Subluxations of shoulders, knees and fingers have been frequent and treatment has been discussed with PT and OT via email in 2024. There are a few letters from rheumatologist about my overall health issues relating to hEDS.
- Dr P says I have Ehlers-Danlos Syndrome but the correct diagnosis is Ehlers-Danlos hypermobile type because there are 13 types. It is not just joint hypermobility, it is a multi-systemic disease, i.e. a major disability, that involves the collagen in the whole body, and it’s progressive. Clearly he has no idea what it is.
- There was no mention of the massive impact of menopause and ageing (senescence) on the deterioration of my health conditions. Initially I was trying to discuss this with another female GP Dr S but she was no expert. A main problem is the increased intolerance towards common drugs (the ones blacklisted for serotonin symptom especially). I was also sleeping on just herbs 10 years ago before menopause but I no longer tolerate them. Menopause really did a number on my joints and the restless legs, and more. Again, menopause is not trivial, but male doctors seem to have a hard time acknowledging it and that’s NOT OK. Also, not a single doctor has noted that I had problems with HRT and that it interacted with other medications, and that the origin of my need to change medications was menopause.
- No mention of my life long battle with IBS. I did discuss GI problems in 2022. I was referred to colonoscopy which I could not attend due to logistics. I have chronic diarrhoea coupled with poor motility but this is usually controlled when I stick to the opioids and have chia daily. Dr S prescribed a laxative that would have made things worse (since the problem is not common constipation but dysmotility).
- He lists three measly clinical findings when there were COUNTLESS more since the last PIP review in 2018, and that’s discriminatory. TWO of the ‘findings’ he thought were relevant were those pesky psychiatric and neurological reports from E.M and R.J that attempted to pin me down for hysteria. The third one was ‘the removal of metal work’ in my foot. I did not just have some metal work removed from my foot. I’d had one FUSION osteotomy surgery in 2019 and another lined up for 2024. I actually had correction surgery after the failure to heal correctly from the surgery of the bunionettes (and my surgeon was dishonest about it so I was referred to another one). I’ve suffered from severe post surgery nausea, which is quite a big deal since it’s also evidence of increased drug intolerance and something that needs to be taken into consideration when I have surgeries. Even with nerve blocks, I was severely sick. In fact, I’m absolutely terrified of going into hospital again because of the nightmarish logistics (e.g. I need Buprenorphine for RLS but it doesn’t go with other drugs, evidently due to serotonin syndrome, and other people handling my medications and diet is nearly impossible, plus the sound intolerance is murderous, and more). The manager admitted that staff need to learn about serotonin syndrome because they were all clueless. Nor did Dr P mention that I was also almost killed in 2019 when my ureter was cut off during hysterectomy and it went undiagnosed for ten days. Following the disaster of having to endure urosepsis many times over (it’s a marvel I survived as instructions for emergencies and coping in general were non existent) and having my ureter reinserted after months of unbelievable torture, the hearing impairment (hyperacusis and tinnitus, NOT deafness) was made so much worse, I received a settlement for the PERMANENT damage the NHS caused to my ears. It’s one thing I have to bring to the attention of the tribunal. Again. And it is not easy.
- Finally, Dr P said I am ‘anxious about symptoms’, yet he failed to say that I’m obviously anxious and depressed as a secondary problem because of my life long primary disabilities and all the horrible things I’ve been through in the UK. So what is the purpose of this statement? What does it even mean? Is this something he would consider saying about his male patients? About people with cancer? It seems to me, he just loves how it sounds when it concerns a female with chronic health problems since a young age. In reality it’s nothing but more meaningless garble, based on one deeply prejudiced shrink’s opinion. I should never have attempted to seek an opinion on possible ADHD with my ear injury anyway. To add salt to injury, the psych E.M and I were masked, social distancing, I was wearing my ear plugs, tinnitus was screaming in my ears, I cannot even understand foreign accents, and I was verbally attacked and manipulated by this stranger so I became extremely nervous. This he then based his simplistic diagnosis on. He completely abused my trust and no one has supported a reversal of the damage he has done. Of course I’m worried about ageing on my own with chronic diseases and increasing medicine intolerance, who wouldn’t be?? I’m definitely anxious about doctors after being bullied by so many (some call it clinician associated trauma and consider it a form of PTSD).
It looks like Dr P has cut down on the amount of genuine diagnoses in order to justify the two psychiatric diagnoses somatic symptoms disorder and FND. When compared with the note he wrote about me in my medical notes, one can clearly see that this form reflects confirmation bias. E.M also cut me short when I was trying to list my diagnoses and so some of them were left out. The amount of diagnoses I have would normally disqualify me for such psychiatric nonsense! So it would seem that by doing so, both committed a wilful act of dishonesty in order to push their own agenda. One can only assume that that agenda is sexist dominance and a desire to keep me from getting further medical assistance and benefits (which for all I know, the desire could also be xenophobic or eugenic in origin).
Quite frankly, it is no one’s fucking business what I think and feel about my own body, or how I ‘interpret’ my own body’s signals! No one can come and take away my right to own my own diagnoses and disabilities! The implied intimacy behind power games that attempt to remove me from my own body is preposterous. The way these doctors attempt to override a patient’s experience is all round dehumanising and a typical marker of misogynistic gaslighting. I’m supposed to feel unsure of my own mind and disgusted with my body. It’s a double win for them if they get the me as a woman to turn on myself. It’s a way of exerting power over me so that I will be subjugated and ‘know my place’. For this purpose, we women are dismissed as overly emotional, unhinged ‘creatures’ whose instability and excessive rumination must make us into unreliable witnesses to our own bodies. Negative emotions simply translate as ‘anxiety’. There is no room for a more nuanced emotional vocabulary. At the same time, we are being told that there are all sorts of emotions that they understand, but if patients have a problem naming them all, then they have alexithymia (‘emotional blindness’). While it’s quite obvious that a lot of people, both men and women, struggle with emotional dysregulation, I think this is a problem that’s too easily used as a way of explaining medically unexplained symptoms and psychosomatic disorders in general.
Alexithymia is indeed used as a possible criterion for somatic symptoms disorder. The reasoning behind this idea is that an emotionally illiterate person will displace their emotions into bodily symptoms. You will be forgiven for thinking that there are hoards of emotions only the experts understand! This is not how it is. There are only so many emotions. Most people probably know how to name them just fine, and if they don’t, then they are probably autistic. But the main thing to consider is that the theory sounds bonkers.
Anxiety as a cause is hollow, it explains precisely nothing, and so to remedy this problem they invented an idea that anxiety ‘somehow’ translates into physical symptoms. They use examples such as a headache or a tummy ache and then go on to saying it can be ‘anything’. Personally, I have never observed this process in my own body and so I do not believe it exists. There has never been any correlation between an emotional state and a physical symptom except perhaps that one time when I found my husband dead in bed and had a diarrhoea attack from the shock! Even when I feel wound up about something, my heart rarely races. It starts racing at odd times, for example after ingesting food, which is not uncommon amongst people with EDS. So I simply don’t know what this alleged connection is supposed to be like.
To claim that I’m anxious in some ‘enduring’ sort of way is the same as saying that I’m ‘too emotional’ and don’t have the self control required to keep ‘symptoms’ at bay. Make no mistake, it is an accusation: what these people believe to be my ‘unconscious mind’ is said to ‘somehow’ direct the play of my life and make me feel things that are inherently bad for my body! In other words, chaotic and negative thoughts and emotions are thought to give rise to chaotic and negative bodily symptoms. I do not believe the mind and the body are inherently chaotic, instead they just follow complex rules that become all the more complex when illness skews the trajectories. It is the same as saying that nature is chaotic when we know it really isn’t, and we know humans with their destructive habits are the ones who force it to assume new, and often ingenious, paths ways. It’s a androcentric and hugely damaging view of the universe we inhabit.
By the same token, I should also be able to feel good things from good emotions, but all I can feel is just a vague sense of pleasure that matches the vague sense of unease that I feel when I’m thinking about unpleasant doctors, for instance, or grieve the death of a family member. To me, it’s all very normal, and a lot less dramatic than I was hoping it would be when I was a teenager. As a young adult I did feel stressed, tense and full of despair, but it translated into an eating disorder, fatigue and neck pain that can easily put down to hEDS and fibromyalgia. E.M started out by acknowledging these disorders but quickly abandoned them in favour of the psychologisation he was clearly determined to pursue at any cost. He certainly did not have my best interest at heart.
These people who like to believe in psychosomatic illnesses can’t even point to a scientifically evidenced source of these presumed psychosomatic symptoms, and so the venture becomes a pathetic attempt to counteract a patient’s subjective testimony with abstruse, pseudo-scientific theories about the inner reality. This contrarian opinion can’t be any more real or unreal than the ‘psychosomatic’ issues they accuse the patients of, and so it amounts to nothing but quackery. It’s completely absurd, because powerful symptoms of disease come from specific regions on the inside of the body. The wilful misplacement of these sources into some poorly defined mental region is a sort of trick that is supposed to make the patient feel as if they are the one behind the symptoms. In other words, instead of pointing to the nervous system, these people point to a subjective agent that is not verified by science, and it really is a case of misappropriating people’s sense of self in the service of psychiatric domination. The idea that the mind is acting on the body is a dated idea that upholds cartesian mind-body dualism, and anyone who appears to back this idea should be carefully scrutinised for implicit bias. It’s simply too convenient to blame one aspect of a human being for causing trouble in another region. The truth is more likely to look like a complex, constant and non-linear interplay between all the countless parts that we consist of. In short, reality appears to have a more global and feminine quality than many men would like. This must feel threatening to individuals who are more comfortable with simple newtonian mechanics and the idea that a god is orchestrating the whole play. In this view, forces are always acting on physical bodies rather than interacting with them in an integral fashion.
Based on an assumption about ‘powerful female emotions’, a simplistic conclusion about causation is therefore made: whatever goes on in an emotional woman’s body must also be a figure of her emotionally tinted imagination. It can’t just be an accident of the nervous system because that would be out of anyone’s control. Such experiences are reserved for the healthy male population who wouldn’t make such ‘mistakes’. The most ridiculous part of it all is that the people who come and make a negative judgment about a woman’s ability to handle her health issues are by definition emotionally stunted males and not compassionate and kind practitioners who would be the first to avoid such sketchy and stigmatising conclusions, and who would do a proper investigation if they had to.
Dr P tries to justify his failure to help me as a doctor by pointing to presumed defects in my character and a failure to make sense in regard to my medication. When you’re incompetent, you blame the patient. That sort of counter attack forms an integral part of the misogynistic script. Clearly he has no idea what the medication in question does. His superficial opinion thus serves to make me look bad rather than to inform other doctors about the drug. Unfortunately he was pushed into this situation by a woman who has internalised the patriarchal storyline and admitted to being an incompetent female. Throughout history, patriarchy has fed on the narrative about the hysterical female, conjured up by emotionally stunted males who have failed to admit that they are too lazy or incompetent to deal with women’s illnesses. Behind their denial, there is non-specific fear of the irrational, but more specifically, there also seems to be an emotionally twisted confusion about their connection to their mother and the sexual power of women in general. In other words, there may well be mummy issues down the line that they should be dealing with in therapy.
Like so many others like him, Dr P thinks the solution for a woman with ‘chronic and persisting symptoms’ is to surrender her body to an authority, presumably a man, so he can control it for her. CBT, which follows simple formulas for normative behaviour as dictated by the patriarchy, is the kind of mind control he prefers. This therapy is attractive to public healthcare because it’s marketed as a quick fix. That’s man style therapy for you! No long meandering explorations into the unconscious that take up time and money… However, when the woman (or other patient with feminine characteristics such as chronicity and vulnerability) refuses CBT, it conveniently ‘confirms’ her status as difficult and irrational. Dr P has proved his stance by omitting my many female related complaints from the PIP form (menopause, HRT, a botch hysterectomy, vulvodynia) as well as painful chronic conditions such as hyperacusis, GI problems, osteoarthritis, carpal tunnel, lumbar kyphosis). All the while he invented mental health problems for me that simply aren’t there, and indirectly suggested that neither insomnia nor restless legs syndrome deserve a proper treatment plan.
Insomnia can generally be considered a ‘feminine’ problem because it’s marked by abject failure to submit to the powers of the unconscious mind. This is perhaps one reason it has traditionally been dismissed as a psychological problem. Of course some people simply have poor habits. One tends to receive a lot of derogatory comments from doctors about poor self-discipline, because we should all be in charge of our bloody unconscious, shouldn’t we! But sleep is a complex mechanism and it can obviously be subject to chronic neurological complications. My impression from E.M was that the use of sedatives for sleep was somehow a moral failing of mine. That’s probably why he suggested the opposite drug, one that speeded me up. At least Dr P mentioned the insomnia, probably because his colleague has been dealing with it for 15 years.
I’m sorry to say the NHS participates in the systemic oppression of women, and I am not the only one to say it, but I am being shut down at every turn. This is a global problem but I’m obviously focusing on the issues that are local to me. I have been a target of medical gaslighting and weird mind games all my life. While the issues are not new, they have been amplified in recent years. Misogyny and medical gaslighting go hand in hand and are both unfortunate byproducts of the patriarchal mindset. The witch hunt that I have been subjected to here in the UK started when I went to what paraded as an ‘ADHD clinic’ no less, and tried to explain to a psychiatric practitioner about my experience of medical gaslighting. He made me nervous, and so I rambled… That very moment, he conveniently decided to reign me in and diagnose me with hypochondria (and/or so-called ‘somatoform disorder’ aka ‘somatic symptom disorder’, a nonsense diagnosis from fairyland). He got all his colleagues to join in so that I would have nowhere to turn for a second opinion. The investigator of my complaint was a male from his culture and also his recruiter. There is nowhere to turn. E.M’s letters make no logical sense whatsoever and are riddled with misogynistic and vindictive parlance. Yet no one wants to take a stand against them and remove the stigma that taints my reputation as a patient with genuine health concerns.
While I haven’t seen any stats, my feeling is that there is a disproportionate focus on young women with chronic pain and fatigue. It sounds like an obsession amongst certain members of the psychiatric profession. There’s a sense of urgency in the texts that describe somatisation. The people behind the construction of these types of diagnoses seem to think it’s absolutely vital to get patients off the medical health services and into psychiatric care in order to control the ‘excessive thoughts and feelings about symptoms of illness’. These patients, who are typically women, are seen as a burden on the health services. I don’t detect the same urgency in the context of patients who inflict illnesses on themselves by drinking, smoking and eating garbage. Instead there are diabetes clinics in every surgery that take really good care of people with this ailment (I know, because my mum had diabetes until I cured her with my diet). Surely something could be done to help these self-destructive and undisciplined individuals rethink their priorities in life and control their excessive thoughts and feelings about socialising and ingesting poison and their lack of regard for their bodies? I also don’t see the same urgency in the context of people who go knocking on other people’s doors in order to get them to buy into their favourite religious dogma. Surely something could be done to help people with excessive thoughts and feelings about religious salvation? And so on - you get the gist, I hope. Something is seriously wrong with this picture.
The conditions I have (namely hEDS, fibromyalgia, vulvodynia, WED/RLS, IBS, lumbar kyphosis, osteoarthritis and hyperacusis) are all ‘legitimate’ illnesses, and they can adequately explain the symptoms I suffer from. In addition, I’ve just been through menopause, and it did a bit of a number on me. All these conditions are discrete disorders with a wide range of complications that persist over time. They are co-morbid in many patients who present with the EDS as their primary disease. They are well known to overwhelm the body with constant, alarming pain signals that are impossible to ignore. This is an incredibly distressing way to live one’s life.
When I was young, certain ideologies stated that a person who suffered from pain and fatigue had a poor connection with their body. It was thought that trauma had created some form of dissociation. You needed to ‘ground yourself’ in your body. I tried so hard to work on that damn connection, and sure, I learnt to relax my body despite the pain. But that was about it. There was no other major revelation to be had. When I told a physiatrist that I’m quite conscious of my body, he laughed and turned it around to make it seem as if I was just somatising my anxiety. ‘If a centipede has to think where it puts its feet, it won’t be able to walk’, was his professional opinion. This happened before I was diagnosed with somatic diseases. Once I was diagnosed, I thought I was safe from further insinuations about a failing psyche. Sadly, doctors just kept demonstrating that they didn’t know anything whatsoever about chronic illnesses and blamed it all on ‘lifestyle’ even though I had no such issues. I hoped to discover some way of curing myself outside of the health care setting but there was very little to be had. I experienced some improvements, for instance in regard to the GI tract, but nothing could cure my malaise in the deeper sense.
People with EDS may in fact experience heightened interoceptive attention, and we do need to be extremely attentive of our bodies in order to prevent subluxations and accidents. In this context, there is absolutely no need to resort to the ‘medically unexplained symptoms’ rhetoric. That’s just lazy and prejudiced, especially when the research into the conditions behind a patient’s diagnoses has been either superficial or non-existent and the way has been paved to leave plenty of room for errors and misinformation. For instance, E.M initially pretended to know something about my diseases but it was soon clear he didn’t have a clue about their multi-systemic expression. If he’d been honest, he could never have pinned me down for somatic symptoms disorder when so many other conditions fully explain my difficulties and those pesky ‘symptoms’ that he’s been throwing around like hollow candy. The way the E.M omitted several major diagnoses of physiological and neurological illnesses in favour of hypochondria is not even recommended in the guidelines in the DSM-5, in fact it’s quite the contrary as these illnesses should disqualify me for SSD. Unfortunately, the criteria are purposely abstruse.
Quote from eds.clinic:
Misattributions and Misdiagnosis of Ehlers-Danlos Syndrome
1. The Impact of Psychosomatic Mislabeling
Patients with EDS often face significant challenges in obtaining accurate diagnoses due to the overlap of physical symptoms with psychiatric conditions. Medical gaslighting, where symptoms are dismissed as purely psychological, is a recurring theme in patient narratives.
- Dysautonomia Misattributed to Anxiety: Symptoms like tachycardia, dizziness, and shortness of breath from POTS and autonomic dysfunction are often misdiagnosed as panic or anxiety disorders.
- MCAS and GI Issues Misattributed to Psychosomatic Disorders: Gastrointestinal symptoms like nausea, gastroparesis, and abdominal pain may be incorrectly labeled as eating disorders or somatization without thorough investigation of GI diagnoses like gastroparesis.
- Pain Misinterpreted as "Catastrophizing": Patients with EDS report debilitating joint dislocations, headaches, and nerve pain. Contrary to "pain catastrophizing" claims in some studies, evidence suggests that EDS patients often downplay their symptoms to avoid stigma.
“EDS symptoms are not subjective. Subluxing joints, dysautonomia, and gastrointestinal dysfunction can all be objectively measured. Patients are not exaggerating; they are living through immense pain.”
2. Medical Gaslighting and Clinician-Associated Trauma in EDS
The repeated dismissal of symptoms by healthcare providers creates a form of medical trauma that exacerbates psychological distress.- A study on clinician-associated trauma revealed that patients with EDS often leave medical encounters feeling invalidated and mistrusted.
- This experience can contribute to post-traumatic stress disorder (PTSD), mistrust in the healthcare system, and delays in diagnosis.
Key Findings:- Misdiagnosis increases diagnostic delays, worsening physical symptoms and emotional outcomes.
- Negative medical encounters result in increased patient hypervigilance and reluctance to seek care.
3. Patient Experiences and Resilience
Despite significant physical and emotional burdens, patients with EDS demonstrate remarkable resilience:
- Patients report pushing through pain, fatigue, and emotional stress to maintain employment, relationships, and personal goals.
- Support networks (e.g., online communities and advocacy groups) play a vital role in empowering patients and alleviating feelings of isolation.
Qualitative evidence indicates that the intersection of medical trauma, societal misunderstanding, and physical symptoms contributes to unique emotional challenges. Patients often describe balancing advocacy with the fear of further invalidation.
Source
Source (Royal College of Physicians)
We can also accept that research hasn’t quite figured everything out just yet and so we can let it be until a specialist can pin point the exact problem. For instance, little is still understood about autoimmune disorders, which may well be at the root of my suffering with pain and fatigue (for example fibromyalgia and hyperacusis/tinnitus may well be autoimmune conditions). I know more or less what my issue with serotonin and dopamine agonists are but there is no specialist who could help me sort it out in a satisfactory way. This was partially what I tried to do at the neurologist’s department but there was no provision for complex diseases, only ready-made moulds for a few common conditions. It’s easy for me to see that all my complaints get worse in the evening and continue to get more vicious, and it’s easy to see that it’s connected to rising serotonin levels. Melatonin is synthesised from serotonin and it is a powerful antioxidant that would normally be a good thing, but it can wreak havoc with autoimmune health conditions by overstimulating the scavengers of reactive oxygen species. Either way, suggesting that I’m stupid for believing I have a neurochemical imbalance is complete madness. It’s clearly a lot more than that.
The main issue is that a doctor should listen to their patient and seek their consent about diagnoses and treatments. They should not run them over with simplistic assumptions, and they should be open to education. The suggestion that women shouldn’t know their own bodies and the subsequent attempt to remove their bodily autonomy by pathologising their connection to it, is the hallmark of misogyny. The misogynistic bias is also obvious from a cold and objectifying style of writing, which I have demonstrated above; by the way they discuss you, you can certainly tell when someone thinks of you as an object they can possess in some way (even if it’s only through their minds). I’m also disgusted by the way the psychiatrist appealed to his colleagues’ opinions in order to apply more pressure on me. Manipulators always do that sort of thing because they know that people usually succumb to group pressure. Well fuck them.
If ‘somatic symptom disorder’, aka hysteria, is a psychopathological disorder, then surely misogyny should be considered one, too? It is a sickness of the mind, and it might well respond to CBT. ‘Have you ever thought your strategies may be skewed in the broader sense’ and so on… yes well funny that, how none of this appears in the DSM-5. Funny also how certain doctors spit on ‘something American’ when it comes to the research about genuine physiological disorders but fully accept the opinions from books such as the American DSM. Of course it has been very clear to me that misogyny in its extreme forms is a facet of narcissism, but there is obviously no genuine provision within healthcare for the treatment of the many men within it who suffer from these types of everyday delusions of grandeur. When it comes to the chicken or the egg, for these people, it’s always the egg that comes first. And you know what that means. There is no discussion. If you fight the diagnosis, then it only proves their point! This is true for somatic symptom disorder as much as it is for FND. Why? you may ask. Haha, we won’t tell! is the likely answer.
By the way, back in the day, a Dr Rosenhan conducted an experiment to see how sane people would be treated if they were admitted to a mental hospital, and the result was elucidating: they were all swiftly diagnosed with serious mental health disorders and all their activities were seen as pathological by the psychiatrists because they were expected to be insane. This is really how chronically ill people today are all treated by a health profession that believes they are mentally ill. Attitudes don’t change, only their expression shifts over time.
As a society, we don’t tolerate murder, but we seem to tolerate doctors being arseholes and misdiagnosing people left and right. The lack of intellectual and emotional engagement too often leads to a patient’s death. My husband died because of misdiagnosis and I also almost died in hospital for the same reason. But as if that’s not enough, I’ve been condemned to sleep deprivation and torture by doctors who refused to listen to me, even when this could easily be avoided! Without further help, they could well have my blood on their hands. These practitioners seem to think that this is all a game, but it’s real life and real people are being hurt, and I’ve had enough of this narcissistic nonsense. We desperately need a medical #metoo.
I’ve been through so much since my husband was misdiagnosed as having a virus, yet he died the following night from the chills and fever of sepsis. I was told it was bronchopneumonia, but the doctor had not found anything in his lungs the day before. On the other hand, he had had a kidney stone removal just a few days before the symptoms of sepsis.
If one day I give up and find that I can no longer go on, I want the world to know that these doctors (especially E.M, R.J and G.P), and the people on the health board who protects them (especially H.S), were all to blame for the erosion of my resilience. They and many other authorities I have turned to have caused me so much iatrogenic harm, and the worst part is that they really don’t care. I would urge everyone to read a recent research paper about the problems with the misdiagnoses of psychosomatic and psychiatric disorders and the immense iatrogenic harm they cause that sometimes even leads to suicide. If the list of symptoms is very long, it’s likely to be an autoimmune disease, they say. I would add that psychosomatic or somatic symptom disorders are mythical unicorns. There is a natural explanation for everything. You can’t take the brain and the nervous system out of the equation.
My personal experience as an adult is that there needs to be a lot of long term stress before it manifests in the slight worsening of pre-existing symptoms. How you deal with your mental issues is key since it’s obvious that self-negligence will increase the risk of organic disease. Activities and the lack of activities cause harm, not thoughts and feelings. There is no such thing as a genuine psychosomatic phenomenon, only an unfortunate chain of events. It’s horrifying that we constantly have to guard ourselves against attacks on our personality. I’m totally realistic about the unfortunate symptoms of disease that I have to live with and don’t understand how anyone could believe that I exaggerate the suffering that I experience. If anything, I always pretended to be more well than I was, because I wanted to fit in. As a teen, I went along with the idea that my pain and fatigue were psychosomatic, and it was a hugely destructive narrative because it perpetuated the idea that my personality was flawed. I have to say it’s a very nasty thing to say to a young person who’s trying their best to cope with obvious disabilities.
First and foremost, there should be a different term for personality disorders. Personality should be a neutral term, just like character. It shouldn’t be confused with destructive psychological tendencies. Serious problems with attachment, emotional regulation, social interaction and all that jazz should be described in ways that keeps these disorders neatly within the four walls of psychiatry. I was told by my psychologist that she was worried about my personality because I seemed to be controlling my eating and was making provisions for life’s disappointments and social interactions. She made the point that I was this way because I hadn’t had the security as a child that other people had. I think she thought I was somatising anxiety as well though I don’t have proof of that.
She was not wrong about my lack of basic security and tendency to drift, but there was more to the story than maladaptive behaviour, and of course there was never anything seriously wrong with my actual personality. In fact I had a very nice personality if we use the term in the traditional sense. I think the criticism was somewhat unjustified and that my efforts to cope under enormous pressure should have been applauded and encouraged instead. I had neurological and hormonal problems and a more modern understanding of such problems would have revealed the real reasons for any emotional dysregulation that I experienced at the time. It’s ironic that even a simple thing such discovering orgasms put me on the path towards better emotional health. It was certainly a much better remedy than years of talking therapy. Would any therapist ever have thought to ask about this little detail? I think psychologists and psychiatrists are simply too eager to find fault in a person, and the controversial issues with the DSM-5 certainly seem to prove my point. People also stand a good chance of healing psychological problems as they grow from young adults to more mature individuals, and diagnoses that don’t allow for change can be detrimental to them later in life. That is even without the issues that genuine physical disorders bring to the table.
How different my life had been without the stress of trying to cope on everyone else’s terms despite all the pain and fatigue. It’s absolutely no wonder that I suffered mentally from the lack of validation. But my nervous system was crumbling and along with that my mental health, and this left me open to unfair and judgmental opinions by people who claimed to understand psychology.
The problem is, if a patient presents with odd symptoms for which there is no apparent physiological explanation in that moment, then the practitioner in question is submitting themselves to the belief that the symptoms are psychosomatic. They cannot demonstrate that their belief is factual. So my professional opinion is that we should not resort to any kind of esoteric belief systems for any medical reason, ever. I would like to ask health professionals to just stop playing power games with vulnerable individuals who can’t win. The patient will invariably lose any battle that involves subjective opinions.
In addition, I believe we need a tighter framework for patient confidentiality and more room for privacy. I would like for health care practitioners to show som humility and stop putting their nose where it doesn’t belong. They should realise that they don’t have to make everything about their patients their business and they don’t have to conjure up some fairy diagnosis every time a patient shows up. Some things are better left alone. We have not volunteered to the relationship and should not feel obliged to share intimate details about ourselves. Health professionals should be more interested in encouraging new research than in a few people that may or may not be inducing a tummy ache or a muscle cramp. We have to see the witch hunt for what it is. Women are always targeted as imperfect and incomplete. If it’s not one thing, it’s another. We are always harassed for being too fat, or too lazy, or too attention seeking, or simply for having a poor personality. The male gaze is as bad as the male opinion. And sadly, just like that psychologist I went to see when I was 18, the majority of women buy into the continuous criticism and harassment of other women, too.
There is no question that when I decided to visit the so-called ‘ADHD clinic’, what I really got, was a lesson in manipulation. One of the worst parts of my recent experiences is the stereotyping of real human beings that seems to widely accepted within health care. Through these ordeals, I’ve had the realisation that many health professionals, including psychiatrists, couldn’t tell a complex human being from a robot! In other words, if you take a simple tick box approach to another person’s life experience without taking hundreds of variables into account, then you’re essentially reducing them to caricatures. In addition, anxiety is a hollow buzzword and a commodified umbrella term that shouldn’t be used to mirror complex mental states without adequate auxiliary descriptions and explanations. The way ‘anxiety’ has been used to justify a dirty power game, is simply abhorrent. I haven’t talked about the process of applying for PIP in this post but yes, in terms of stereotyping and the dehumanising of the sick and disabled, it really is a horror story all its own. If we can’t trust doctors to be on our side, then there is really no hope.
Perhaps I’m too honest, too verbose, too angry. I’m sure in the minds of many medical health professionals, it’s all part and parcel of a hysterical disposition. An angry female patient is just another drama queen. Women are not supposed to be angry, right? Of course nothing is this simple and banal. I don’t know how to be any other way at this point. I’m not well and the screaming tinnitus makes me especially irritable. I have struggled to survive in a man’s world for half a century, and I’ve had enough of it. This is the best I can do. They probably won’t listen anyway.
Update: I have now discussed my complaint with my GP of 15 years. It went well in that he fully acknowledged the injustice I have been subjected to and updated my medical records so that my medical conditions are summarised in one place. He seemed to understand why I was so upset and I’m pretty sure he shared my view that the somatisation theory is poor psychology. He has stated in that note that I disagree with the psychological assessment from 2020 as it does not reflect the living experience of the health disorders that I have. He reassured me that no one would override this information, and I think he also meant that doctors who don’t know me should be warned against filling in benefits forms about me in the future. I forgot to ask if he included the wrongful FND diagnosis. I then told him that the bible of psychiatry is controversial because of pathologising normal reactions to adversity, and I think he could see that. I shared the recent research paper about medical gaslighting with him.
I also made a point of showing this GP my spinal deformity as I was sure he had never seen it and it was never mentioned anywhere. He seemed suitably impressed and agreed that this would have been quite enough to make anyone feel self conscious and distressed as a young person growing up, and that it most certainly wouldn’t count as ‘somatisation’. “It would have been weird if you hadn’t felt distressed”, he opined. Sometimes doctors can have simple common sense and that is why I have been seeing this particular doctor. The spinal deformity had far reaching psychological, physiological and practical consequences, and I do not feel that the health professionals I met with in my young age in Finland were able to comprehend the massive impact it had on all my choices and experiences. I think their assessments were generally very narrow minded, patronising and lacking in compassion. At age 36, I still didn’t have the diagnoses of hEDS, and fibromyalgia, which had been diagnosed in 2002, was not considered ‘a scientific diagnosis’. I was therefore diagnosed with somatisation. It was suggested that I was anxious and avoidant, for instance that I avoided job interviews. This was obviously not true. I thought the psychologisation of my medical conditions would end with the diagnoses in 2018, but it didn’t.
Unfortunately my GP can’t make the original letters disappear, so I have to give up on my quest to get them off my records. But I will still try and pressure the MP to deal with the injustice of psychiatric misdiagnoses that cannot be deleted. In the meantime I would suggest that people who are stuck with these kinds of misdiagnoses talk to a GP they trust, if they have one. I should have done it a long time ago, though to be fair, I had a very strong case this time and think it made a lasting impression on my GP.
Resources:
Misogyny >
https://en.wikipedia.org/wiki/Misogyny
Gaslighting, Misogyny and Psychological Oppression (Cynthia A. Stark) >
https://philpapers.org/archive/STAGMA-3.pdf
The Sociology of Gaslighting (Paige L. Sweet) >
Visualising Abjection: Gender Power and the Culture of Humiliation
We Need to Talk about the Misogyny Running Rampant in Healtcare >
Medical Gaslighting as a Mechanism for Medical Trauma: Case Study and Analysis (Shapiro & Hayburn)
The Welsh Senedd promises improved support for chronic illness >
This above passage from one of the letters by E.M is bizarre. I certainly never claimed to somatise my anxiety, it’s a blatant lie. He didn’t believe that I suffered from side-effects from the partial dopamine agonist he tried me on, and told me the symptoms were due to nocebo effect! He could not fathom that a small amount (sub-clinical, according to him) was having an effect on me. I’d like to point out that women tolerate medication differently than men and that some of us really do have problems with the metabolisation of certain drugs. This is really not so surprising. It could be down to a heme protein that connects to the oxidation process, for instance. Again he uses the word ‘believes’ in a derogatory manner (‘she continues to hold the belief that what she is experiencing is due to a genuine neurochemical imbalance’). I told him upfront that he didn’t know anything about neurology, and he retorted that he is a psychiatrist, not a neurologist! Funny how confident he was despite his lack of competence… over confidence in your abilities is called the Danning-Kruger effect, by the way.
