How I was subjected to medical gaslighting part 1
To add to all the other torturous experiences I’ve had in the past few years, I also had a very horrible encounter with a psychiatrist. I still regret the day I decided to investigate into possible ADHD. Instead I got shouted at that I’m a hypochondriac! I do have some such symptoms, but not all, and it’s possible that the symptoms are actually related to Restless Legs Syndrome (Willis-Ekbom Disease), which I definitely do have, and probably have had since my teens. The experience was so confusing, I eventually, after several fruitless attempts to complain, I ended up writing a very long analysis of all the things that went wrong and the misogyny behind it all. I apologise that the article is so long but I simply cannot spend anymore time and energy editing it down.
- INTRODUCTION
1.1. Poor conditions
The subject of my complaint is my experience with a locum psychiatrist (henceforth referred to as Dr M) whom I was seeing in the local mental health clinic in 2022-23. The complaint refers to the inadequate knowledge that health professionals display in regards to a number of chronic health conditions, in this case Ehlers-Danlos Syndrome, Willis-Ekbom Disease (aka Restless Legs Syndrome) and Hyperacusis especially, but my other health problems also seem very poorly acknowledged, not least a predisposition towards serotonin syndrome that doctors shockingly don’t acknowledge because they don’t know what it is. It has come to my notice that these conditions are either inadequately covered in medical school, or not at all. The charities that attempt to raise awareness about some of these conditions can confirm my observations. I am by no means the only who is being gaslit and left to my own devices. Because of ignorance and prejudice, I have been grossly subjected to medical negligence and misdiagnosis, in particular when I paid an unfortunate visit to see Dr M.
To begin with, I wish to make the point that Dr M had a very strong South Asian accent which I could not easily comprehend as I am myself a foreigner. We sat two metres apart or more, both wearing masks. I also suffer from a severe hearing impairment - though I am not deaf, I’m forced to wear ear plugs to protect myself against harsh sounds. This condition has been investigated by two audiologists and a witness expert, and has been deemed a genuinely debilitating disorder. It was nevertheless completely ignored by Dr M who took no interest in the communication problems at all. In reality, these conditions contributed dramatically to my difficulty in making myself understood and in understanding what the practitioner was trying to achieve with his aggressive and inconsistent interview that was neither here nor there. I spent the appointments struggling to piece together bits of information that made little sense to me, and was completely shocked when I finally got hold of his four letters to my GP and realised what nonsense he had really thought and what he had subsequently written about me. I was also very disturbed by the fact that he had posted them above my head without copying me in, that he spoke about me in extremely demeaning terms, and that he had published confidential information without my consent for anyone to read. I cannot for the life of me understand how such a patronising and humiliating procedure could be ‘common practice’ within mental health care when this is not how it is done in a normal medical context. I am deeply shocked.
In addition, Dr M was neither thorough nor pleasant, and did not inspire confidence. All in all, I felt that he was pulling the rug from underneath me and abused my trust, and I will explain this in detail further down. He was impatient and inconsistent, asking unspecific questions that I could not quickly find an answer for. When I failed to give a quick answer or all the information I wanted to give, he snapped at me and impatiently moved on to the next question. This happens a lot with certain other doctors, too, but this was a particularly sensitive type of appointment that left me feeling more emotionally abused than I’ve felt with other health practitioners. With his mannerism, Dr M pressured me to speak fast, but I CANNOT speak fast because English is not my native tongue and I also genuinely suffer from so-called ‘brain fog’. In situations where I feel attacked or I’m speaking to an unsympathetic stranger, my brain tends to freeze altogether - it’s part of a ‘freeze stress response’, as I believe it’s called. It’s extremely unfair not to let me finish my sentences in a calm environment. Unfortunately many foreign doctors especially seem to rush their patient in a bid to catch them out and reveal what they believe to be an imaginary fixation on illness. I will talk more about this later in the report.
1. 2. Medical ignorance
The core of the matter in my relationship to the practitioner Dr M is that he quickly decided I was ‘just a bit anxious’ and refused to believe that I have serious and diagnosed chronic health conditions that impact my life deeply. He did not listen to me and did not read my medical history. It would seem that he held very powerful prejudices that I could not dissuade him from believing in. The lack of interest in my medical history suggests that confirmation bias formed the background to his rapidly formed opinions. The fact that he went on about my ‘beliefs’ in his letters is deeply ironic since he clearly demonstrated that he held prejudiced beliefs about my health conditions rather than actual knowledge. He decided within just one sitting that 1. I was neglected as a child, 2. that I am anxious and 3. that I ‘somatise’ my anxiety as a consequence. In fact he claimed in his letters that I had admitted to somatising my anxiety, which I most certainly had NOT. How can I admit to something when I don’t even understand what it’s supposed to mean? It’s completely ridiculous and frankly horrifying that a so-called expert on the workings of the psyche would simplify a complex life in this way and suggest a shorthand causation without any deeper investigation into the many layers that constitute a human life experience. There is simply no evidence for such ‘causation’. Just because my mother drank, doesn’t automatically mean I was neglected. In fact, I do not even think that I was neglected but rather had a typical ‘Generation X’ type childhood which a younger person like him would not necessarily understand even if he came from the same culture. Now, of course he did not, since he came from a diametrically opposite culture.
He concluded that I ‘believed’ I have all sorts of conditions that he didn’t believe I have. In the same breath he denied that I have anything genuinely physically or neurologically wrong with me because somehow, in his mind, it was not compatible with the anxiety he decided that I suffer from. I don’t know how he means that the anxiety occurs in the body but apparently in his view, it’s separated from the nervous system. Let me underline that although he is not a physician, he firmly believed that my symptoms were not consistent with the conditions I claimed I have. He says “The physical conditions that she has cannot explain the severity, variety and persistence of her physical complaints. She is preoccupied with these symptoms and has sought repeated consultations with multiple doctors.” Where did he even pick this non-existing information about ‘repeated consultations’? I reiterate: he clearly had not even glanced at my medical records and was pulling assumptions out of a hat.
Well, I am now 58 years old and hEDS typically starts at the onset of puberty, so I have had this condition for almost fifty years. The fact that my problems started at that point in my life is unlikely to have anything to do with psychological factors. So yes, the condition can in fact explain the ‘severity, variety and persistence’ on most of my symptoms. There is plenty of information online about hEDS, for instance at the Ehlers-Danlos Syndrome Society, who outline the many varied and complex multi systemic troubles it causes and try and raise awareness of the complications. Note that EDS is a collagen deficiency and collagen is present everywhere in the body and can therefore cause extreme symptoms of a multi-systemic kind. There is plenty of information about all the ways in which the disorder wreaks havoc with those of us who suffer from it.
I explained to Dr M that my condition is multi-systemic but he just stared at me as though he didn’t know what the word meant. hEDS also tends to come with many co-morbid conditions. ‘If you can’t connect the issues, think connective tissues’ is a saying within the community. Most of my co-morbid conditions have naturally been going on for decades as well, and the more recent problems that have come late in life, are so severe I cannot hope that they will improve before I die. It’s completely ridiculous to assume that I have ‘sought repeated consultations with multiple doctors’ when he knew absolutely nothing about my medical history. What time frame is he even speaking of? I conclude that he simply made this up in order to incriminate me. Contrary to what he implies, the reality is that I have never visited any consultants more than once unless THEY wanted to see me, and it was usually in relation to surgery or a follow-up that they decided I should have. I have not seen more doctors than anyone else who’s been poorly for decades. I am not young! Dr M’s wording is a spiteful lie and it can easily be disproven by anyone who would care to take a look at my medical records. I can assure you that from the point of view of my diagnoses, there is nothing unusual there at all. But strangely, no one cares and lots of people are willing to back up a ridiculous shrink without even a shred of evidence.
As a person with chronic conditions, I have obviously been forced to look for medical help. In 2019 I had a hysterectomy for the removal of fibroids that led to very serious complications due to medical negligence, and I was not far from death for almost two weeks while I waited for the correct diagnosis. I had to see a lot of doctors because my damaged ureter had to be reinserted, and I ended up with a substantial settlement four years down the road. In recent years I have also had to have quite a lot of appointments because of foot fusion surgeries. Together with recent appointments for carpal tunnel syndrome and osteoarthritis, they amount to over 20 appointments already. While EM knew nothing about any of this, I do wish to underline that all these appointments have not occurred because I was looking for help for imaginary illnesses! I have also quite recently acquired a new disorder, hyperacusis, due to auditory shock. I needed to see an audiologist about it, once to have a diagnosis and a second time to discuss the worsening that occurred after the botched hysterectomy. He then referred me to a colleague to discuss treatment options. In addition, I have tried to find specialists who could help me manage the increase in symptoms from WED/RLS that have occurred during menopause, namely with the correct medication. EDS is expected to bring an increase in physiological challenges as we age! Unfortunately, HRT can bring on more problems in people with EDS, and this has been my experience. While Dr M was testing psychotropic medication on me, I was already suffering from an overstimulation of the nervous system due to HRT. None of these medical events still qualify as signs of attention seeking behaviour and health anxiety - I needed real help with very real problems, and I have all the necessary papers to prove it, too. I cannot be held responsible a general lack of efficiency within the NHS, or the import of doctors with substandard qualifications, for that matter.
Let me explain in greater detail what my conditions constitute of. Lax ligaments give rise to multi-systemic neuropathology that have already been outlined by some distinguished neurologists out in the world, but research takes time and money, and there is plenty left for scientists to figure out. I have crippling skeletal issues that are severe, for instance spondylolisthesis, which is a kyphotic curvature of the spine that had to be reconstructed early in my life (it’s related to scoliosis, which is very common in the EDS population). Strangely, this did not seem to make any impression on Dr M whatsoever. Dr M’s assumption that I’m doctor shopping is especially ridiculous since he did not know who I had been seeing and why, but somehow imagined that he could ‘read’ my history clairvoyantly just by looking at me. He was only aware that I was going to see a neurologist because I told him, but clearly he did not understand that this was intended for refractory WED/RLS. He actually he bullied me about my expectations. Refractory obviously means that the condition cannot be treated with conventional drugs, i.e dopamine agonists (which at any rate are no longer recommended by the specialists). Unfortunately, I have since realised that neurologists don’t necessarily understand WED/RLS, either, and it takes a high end specialist to understand the deeper issues surrounding the conditions that I have. This is unbelievable since about 10% of the population suffers from the disorder, but it is nevertheless true. I am most certainly not wrong in assuming that doctors in general don’t understand my conditions, but Dr M turns my opinion into a personality defect: “She believes that the problem is that doctors don’t understand her condition”, he states, again using the word ‘believes’ to stress his spite. Shock horror: doctors don’t know everything. Well, who knew?
Dr M continues: “She is also self-medicating and manipulating her medication regime. Finally she is absolutely certain of the origin of her symptoms that is their relation to her diagnosis of EDS and this belief cannot be shifted even with medical advice. Mrs Carpelan will therefore meet the criteria for an Undifferentiated Somatoform Disorder F45.1”. Is this practitioner for real? Therefore?? I was indeed at a complete loss for words when I read this utter rubbish. Had I not seen the author, I could have sworn this was written by a spotty teenager who tried to make sense but miserably failed at being an adult.
Let me be very clear. This person is not a specialist in EDS. He is clearly unaware of the many and difficult complications that can arise with this genetic disorder. It is already widely recognised that it can cause extreme and chronic exhaustion, insomnia, GI distress, wide spread muscle and joint pain, osteoarthritis, fibromyalgia and much more. I have many of the typical symptoms, but we are all unique, so there are also listed symptoms that I don’t suffer from that much (e.g. severe POTS and MCAD). Two of my main conditions, hEDS and WED/RLS, are progressive, which means that these conditions have steadily deteriorated since early puberty. I can assure you that I don’t have any type of dissociative disorder or any other outlandish phenomenon to explain my level of disability. In fact, I don’t have any genuine mental disorder but rather co-morbid mental issues and insomnia that can easily be explained with the diagnoses I have. To blame me for being ‘preoccupied’ with my symptoms is ridiculous since the symptoms are so difficult to live with that I cannot work, and the symptoms don’t take a vacation. If I had not been unwell, I would have a PhD in psychology and since I’m multitalented, I could have had a career in any interesting subject of my choice. I would not live in the middle of nowhere in Wales. When I could no longer push myself, I had to give up on my ambitions, and I was eventually granted a permanent disability pension in 2001 in my homeland.
Finally, my medication is a difficult matter and it requires continual experimentation, and not a single doctor has ever thought it a ‘bad’ or morally depraved thing to try and figure out what works, and what doesn’t. This issue is especially pertinent since menopause and the process of ageing, both of which are reputably poorly understood by men. My body is changing and it’s obvious that I need to find what works for me NOW, not just accept what worked ten years ago before menopause, as Dr M lazily suggested. Contrary to what Dr M suggests, the WED/RLS/PLMD and the insomnia are perfectly real and ‘detectable’ disorders that progress over time and I have plenty enough medical documentation and evidence of these problems.
Unfortunately the understanding of my conditions is still so poor, I was only diagnosed with hEDS in 2018 and with WED/RLS in 2020 and 2022. I waited over forty years for the diagnoses! This is four times the average. The diagnostic process for EDS is complex and includes thorough physical examinations. WED/RLS, PLMD and the insomnia have been confirmed via sleep tests. I note that Dr M did not conduct any such thorough physical examination that could have established a base for his ‘medical opinions’. Even something as simple as the dreadful condition of my tongue would have revealed a deeper health condition. Did he look? No, of course not. Instead, he found it convenient to proceeded to gaslight me. In addition to his blatant ignorance about hEDS, he was entirely unaware of the complications that can arise with refractory Willis-Ekbom Disease (Restless Legs Syndrome aka WED/RLS). It is not ‘something in the background’. This is a GENUINE NEUROLOGICAL DISEASE and it can be very severe. He cannot lawfully claim that I am wrong in assuming that there is a ‘genuine neurochemical imbalance’, which he claims in his letter. I really don’t think he himself has a clue what that’s supposed to even mean, as it appears as some kind of lazy blanket term for unknown neurological events. In other words, it’s just jargon. He denied understanding neurology so how can he then make this assumption? In reality, WED/RLS can be extremely debilitating when it causes discomfort, severe sleep deprivation and monstrous problems with the sleep schedule. While I also suffer from some of it in the day time, the really sinister problems emerge when I cannot sleep because of it. Dr M mentions RLS in the first letter, but then drops the topic altogether as though it’s entirely insignificant. Why? It’s obvious he doesn’t know anything about it whatsoever. Although I didn’t know it then, RLS/WED can also be mistaken for ADHD, and this is something a competent psychiatrist should have discussed with me in the ADHD clinic.
Oh, and my ‘symptoms’ of disease ARE fully ‘detectable’ by the way: “Her symptoms have been present for many years and cannot be explained by detectable physical disorders”, he writes. Yes, I have chronic conditions so symptoms would have been present for ‘many years’, and they CAN be fully explained by the diagnoses I have. Do I have to spell out the definition of chronic? With the right tests, many symptoms can also be detected. This is no mystery, all it takes is a few minutes of googling if you have the intelligence to put in the right search words. In addition, I was of course also going through the aforementioned MENOPAUSE, which this male clinician obviously had no understanding of whatsoever. This is yet another medical disgrace as it’s virtually impossible to get knowledgeable help for this in Wales (along with anything else that relates to female health).
In addition to the aforementioned health challenges, Dr M completely disregarded my problems with Hyperacusis/tinnitus. Like EDS and WED/RLS, these problems can, and usually are, so distressing, that people actually commit suicide because of the severity of the symptoms. In fact, when I complained that he had shouted at me because he was impatient with my inability to accept his insinuations, he suggested that I’m deaf. He was so ignorant, he mistook Hypercusis for deafness! In reality Hyperacusis is the opposite of deafness but it’s difficult to hear through ear plugs and obnoxious, deafening, screaming tinnitus. I also have vulvodynia, which is believed to be an autoimmune neurological disorder and was diagnosed by Finland’s top expert twenty years ago. It has been a nightmare to live with while trying to maintain intimate relationships. These are diagnosed conditions that I have documentation of. None of these conditions are psychogenic although they can obviously give rise to co-morbid anxiety and poor mental health. Having said that, I want to stress that experts think dysautonomic fluctuations are often mistaken for anxiety. I will get back to this point later on.
Lastly, I have also been properly diagnosed with fibromyalgia by a top expert in Helsinki (though even today, some misogynistic medical professionals prefer to ignore all the evidence in favour of this condition and prefer to believe that it’s psychosomatic because it affects more women than men). Fibromyalgia was confirmed at RJAH in 2018. This is NOT an easy disorder to live with and it is certainly not indulgent! Non-refreshing, poor sleep is but one of its manifestations. In the context of my conversation with Dr M, it’s important to note that insomnia is typically a very troubling aspect of the disorder, and that it has nothing to do with poor sleep hygiene. The fact that it has been going on for ‘many years’ to paraphrase Dr M, or really decades as the case may be, rather confirms the illness’s status as a genuine disease rather than as an indication of mental failure along the lines of the diagnostic criteria of the DSM: Dr M uses ‘ongoing and long lasting symptoms’ as an argument for his diagnosis of imaginary disease and personal failure, and it’s complete and utter nonsense. In fact, it’s sloppy, substandard medical practice, and someone needs to take this seriously.
As it happens, there was at any rate not sufficient time to describe any of the conditions I have, especially as Dr M was constantly cutting me off in a very disrespectful way and hurrying things along. At the same time, he did not make sure that I understood that he had almost immediately diagnosed me with something completely different than ADHD. I suspect he had made his mind up before I even entered his office.
In short, the gatekeeping of all my genuine, physiological health conditions by holding me hostage to a psychiatric nonsense diagnosis, is complete insanity. A person who does that is obviously deviant and abusive, and should not be allowed to practice in this country. It is medical negligence to fail to fact check, and EM and the people involved in dealing with my case are all guilty of it.
1.3 Wikipedia
EXCERPT FROM WIKIPEDIA WITH MY COMMENTS IN BOLD:
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] NONE OF THIS IS TRUE IN MY CASE OTHER THAN THAT YES I AM GENUINELY SENSITIVE TO DRUGS, BUT THERE ARE PERFECTLY RATIONAL EXPLANATIONS FOR IT THAT ARE NOT IN ANY WAY ‘OUTLANDISH’ IF YOU KNOW A LITTLE BIT ABOUT NEUROLOGY. I EXERCISE DILIGENTLY EVERY DAY FOR SYMPTOM RELIEF, BUT I DO NOT HAVE THE ENERGY TO SHOP FOR DOCTORS SINCE IT’S OBVIOUSLY A WASTE OF TIME AND ENERGY! YET I PAY TAXES AND HAVE THE RIGHT TO TAILORED CARE LIKE EVERYONE ELSE! I HAVE GENUINE CHRONIC DISEASES, AND I AM NOT PLAYING AROUND.
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] hEDS TYPICALLY STARTS IN PUBERTY AND THE PAIN, FATIGUE AND GENERAL MALAISE CAN BE EXTREMELY CRIPPLING ALREADY FROM A YOUNG AGE. WED/RLS ALSO OFTEN STARTS EARLY. EVERYTHING ELSE FOLLOWS SUIT AND THE CONDITIONS ARE WELL KNOWN TO PROGRESS WITH AGE (FATIGUE AND PAIN THUS GET WORSE OVER TIME, ALL IN NORMAL ORDER AND HOW IT WAS FOR ME). THERE HAVE NEVER BEEN ANY MYSTERIOUS ‘REMISSIONS’ OF THE KIND DESCRIBED IN THIS PASSAGE BECAUSE THE CONDITIONS ARE PROGRESSIVE!
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.[9] HOW DO YOU TELL THAT SOMEONE IS ‘EXCESSIVELY’ PREOCCUPIED WITH THEIR ILLNESS? HOW DO YOU KNOW THAT THEY HAVE NOT BEEN REPEATEDLY GASLIT BY BIASED AND INCOMPETENT MEDICAL PERSONNEL? THIS IS THE STORY OF SO MANY WITH EDS! GO AND LOOK AT EHLERS-DANLOS.ORG FOR EXAMPLE. THE DISEASE IS SERIOUS BUT MEDICINE IS STILL CATCHING UP WITH THE MULTITUDE OF SYMPTOMS.
Somatic symptoms 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.[9] 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.[1] SENSITIVITY TO DRUGS IS A NON-ARGUMENT. IT CAN HARDLY BE PINNED ON A SOMATIC DISORDER WHEN IT IS WELL KNOWN THAT MANY DRUGS CAUSE HAVOC IN CHRONICALLY SICK INDIVIDUALS, ESPECIALLY IN THE ELDERLY (POST MENOPAUSE HAS CERTAINLY HIT ME IN THIS WAY). FOR INSTANCE IN REGARDS TO WED/RLS THERE IS A VERY LONG LIST OF DRUGS THAT WORSEN THE CONDITION. COMPLEX CHRONIC CONDITIONS SUCH AS EDS, FIBROMYALGIA, WED/RLS AND SO ON TYPICALLY EXIST ON A SPECTRUM. EITHER WAY, SIDE EFFECTS ARE OBVIOUSLY A COMMON COMPLAINT IN REGARDS TO ANY DRUG, AND IT IS RIDICULOUS TO SINGLE OUT CERTAIN INDIVIDUALS AS PART OF A GROUP OF DELUSIONAL DUMMIES SIMPLY BECAUSE THEY REACT MORE STRONGLY THAN OTHERS. MORE THAN ANYTHING, IT IS NOT FOR A PSYCHIATRIST TO DECIDE WHETHER THE CONDITION IN QUESTION IS ‘SUFFICIENTLY’ SEVERE OR NOT, OR WHETHER SIDE EFFECTS ARE SOMEHOW ‘ABNORMAL’ IN RELATION TO THE OVERALL HEALTH CONDITIONS, WHICH THEY KNOW NOTHING ABOUT. FOR SUCH ESTIMATIONS, THERE ARE NO RELIABLE COMPARATIVE METHODS OUTSIDE OF SCIENTIFIC RESEARCH.
IN SHORT, THESE ARE ALL SNARE LIKE NON-ARGUMENTS BECAUSE THEY ARE ESSENTIALLY BELIEF-BASED AND ENTIRELY SUBJECTIVE OPINIONS. THESE OPINIONS AND PRESUMPTIONS ARE ABOUT THE ASSERTION OF AUTHORITY ABOVE EMPIRICAL EVIDENCE, AND ARE THEREFORE DIFFICULT OR IMPOSSIBLE FOR ANYONE TO DISPROVE. MUCH LIKE RELIGIOUS DOCTRINES, IT ALL AMOUNTS PERSUASION, GASLIGHTING AND QUACKERY, OF DOGMA AND AUTHORITY OVER GENUINE PERSONAL ACCOUNTS OF SUFFERING. IT HAS NOTHING TO DO WITH MEDICINE AND SHOULD NOT BE CONFUSED WITH SCIENCE. THE TECHNICAL TERM FOR SUCH DISINFORMATIVE GARBLE IS BULLSHIT.
It’s common sense that the risk for complications such as serotonin syndrome increases as people get older: on the one hand, the metabolism changes with age, and on the other, people tend to take more drugs as their bodies deteriorate, and very many of these drugs increase serotonin. It’s very easy to get an overload of serotonin from the simultaneous use of such drugs and supplements, and this is called serotonin syndrome or toxicity, but doctors are not trained in this problem and there is no easy way of discussing this with consultants on the NHS since it’s impossible to know if random neurologists will take the issue seriously or not. I have episodes following medicine use that have spooked me and they seem to be manifestations of SS. But I’m not about to run around trying my luck with the common doctors. There are plenty of articles online and black lists of medications, and it’s not difficult to see that certain combinations can trigger such episodes. It’s just sad that I cannot discuss my suspicion in a deep way with anyone, as this should be my right! Just because intelligent doctors are hard to come by, does not mean I am just being a hysterical attention seeker, otherwise known as a ‘typical woman’.
1.4. The lack of understanding about medication
Dr M repeatedly cut me short, denying me the chance to explain my point of view, and instead jumped on the assumption that I’m just being a hysterical patient (woman). Well, most doctors DON’T understand my conditions, and I am sorry to say that this is FACT. Some research can easily confirm my experience of medical gaslighting as universal. Sadly, judging by the many complaints one gets to see on social media every day, public healthcare is dominated by doctors who think they already know everything there is to know about medicine. I don’t suppose all these patients and people who work for charities are deluded! As a matter of fact Dr M confirmed my point by demonstrating blatant ignorance and hostile prejudice himself, exactly in line with so many other arrogant doctors before him - well, not all, but SOME. A doctor with integrity would have educated themselves before writing such nonsense about a patient’s health conditions. But even if he had read up on EDS and WED/RLS, he should have the decency to admit that the diseases are too complex for him to have any opinion on whatsoever, and are better left for the specialists. Sadly, there is plenty of evidence that ignorance amongst health practitioners is a massive problem in today’s world. For instance, dopamine agonists are no longer recommended as a first line of treatment for WED/RLS, but the majority of doctors who think they understand RLS actually don’t know this and often cause untold harm because these drugs can cause permanent damage to dopamine receptors. When the drugs cause augmentation, these doctors just increase the doses to ludicrous levels, and fail to acknowledge the tremendous side-effects that ensue. There is more to be said about all this, for instance, doctors usually fail to mention the possibility of catastrophic side-effects such as gambling and reckless behaviour, and there have been successful lawsuits against such doctors. But I will leave it at that. My point is, dopamine agonists are not to be played with.
In his letter, Dr M said he was not in a position to give me dopamine agonists even though according to him, I was actually asking for them. No, I did absolutely not ask for dopamine agonists as I had already tried one with very poor success! He did not listen to what I was saying and was just making something up as usual. Actually, when it comes to RLS, Alpha2Delta drugs are preferred, but I did not tolerate them either - I used low doses in my 40s but when I tried them again in my 50s, my body would have none of it. This is not imagination - why on earth would it be? Most of the serotonin resides in the gut, and the balance is easily upset in people with brain- and gut disorders like myself, and so I vomit and get diarrhoea from the drugs that are blacklisted for serotonin syndrome. The problem was likely exacerbated by HRT. As most enlightened doctors know these days, there is a solid brain-gut connection that explains many of the GI symptoms that occur in patients with some level of brain disorder, which conditions such as WED/RLS indisputably are. Sadly, most doctors know nothing about the brain so they are unable to connect the dots. In fact I have found that doctors know nothing about the pills they dish out without much consideration, and it’s deeply concerning because one size does not fit all.
When I trialled a partial dopamine agonist at clinic, the result was equally poor. Dr M suggested this as an alternative to sedating sleeping pills, which is very strange since it’s a stimulating drug, and I obviously take sedating drugs in order to sleep. Unsurprisingly, it increased the insomnia, so his reasoning was very odd indeed. Instead of admitting to his mistake, he blamed me for making my reactions up!
I would like to point out that Dr M does not specify what ‘symptoms’ he is referring to in his letters about me, and this collapses his arguments right from point zero. Based on the fact that I was trying my best to avoid heavy drugs and tried to find a way of managing some of my problems with supplements, he decided that I was ‘self-medicating’. I have never heard a more ridiculous argument before in my life. He writes ‘noting magnesium in particular’! Let me just repeat this for effect: the doctor thought I was SELF-MEDICATING ON MAGNESIUM! So if you can’t find alcohol and tobacco or food to blame, you blame supplements. Ok. Well, many people claim to have found relief from WED/RLS and insomnia using magnesium, but at the time, I didn’t know specialists actually recommend IRON. You can see the recommendation to use the supplement iron in the letter from the sleep clinic. Unfortunately iron did not help me in the end, and you cannot get iron infusions on the NHS, but I didn’t know this at the time. Dr M clearly did not know anything about the issue with iron although you can also find the guidance in NICE. I was in a pretty bad place at the time because I was not offered anything on the NHS that actually helped with my WED/RLS until almost a year later. Dr M simply accused me of trying to find a natural solution, which realistically speaking could have been the iron. How unbelievable is that?
As a self-professed ‘professional’ Dr M should have known that the drug quetiapine, which I was prescribed for insomnia in the 2000s, aggravates WED/RLS. There was no acknowledgement of this whatsoever, instead, in his letters, he recommends that I continue using it. My health situation is not simple - I can assure you that if it was, I would have solved all the problems a very long time ago. Why would I exaggerate? What would I gain? I am merely trying to survive. Experts on EDS all say that EDS is not simple, and anyone can go and research these medically informed points of view. But this is not what Dr M discussed with me since he avoided all talk about what the medications actually DO for me. ‘Why are you taking these drugs when they don’t work?’ he asked me. He just assumed they don’t do anything at all! Well that’s a cop out if ever there was one. Of course they do, or I wouldn’t be taking them! I am not STUPID. But he was very clear at the time that I was ‘stupid’, although he denied it later.
The failure to discuss the medication side-effects with me amounts to medical negligence. Not only does it not make sense to tell me that I’m imagining my symptoms but should still take the medication that was prescribed for those very symptoms, it also does not make sense to suggest a medication that makes the symptoms worse. So which is it going to be? Are my symptoms then, according to him, real or not real? The reason I have persisted with small amounts of this particular drug is that it has some useful actions in relation to insomnia (and I can tell you which ones they are, too). The doctors who claim I’m inconsistent simply don’t understand what the drug does. Like with so many other medications, sometimes you have to use a drug and then treat the side effects with another one, and this situation is like that, unfortunately. Doctors don’t argue this logic when people suffer from heart diseases, but when it comes to insomnia, apparently the patient must be a nutter and therefore fair game for random speculations. But in the end, the onus is on me to decide these things when I don’t get the feedback that I need from the ignorant doctor, and in this situation it is not for the doctor to accuse me of manipulating my medication, like Dr M states in his letters! This is amateur psychology and a projection of blame that is entirely unacceptable.
There was also some confused talk about noradrenergic drugs, by which presumably he means drugs that are used to treat ADHD. I have not had any experience of them as he claims. However, based on my increasing intolerance to drugs, I already suspected stimulants would not work. (The way he claims I “believe” I cannot tolerate their effect, sounds as though he thinks I tried them but was in the wrong about not tolerating them - both false assumptions). All this talk is very strange since neurologically, adrenaline is made from dopamine, and he doesn’t connect the dots or acknowledge what I really said, which is that I don’t tolerate most drugs at this point in my life. I am 58, it is not unusual to have serious problems with side-effects. This is why I did not want to trial any other psychotropic drug under his care, and I thought we were in agreement about this. Yet his letters tell a different story in which I am made to look like a difficult type who has neurotic and unreal responses to drugs (more about this later). I tried to show him research into serotonin but he looked terrified and did not pick up on this. A good doctor might have shown some interest because my thoughts about serotonin syndrome are perfectly reasonable, so much so that even the management at RJAH has acknowledged my plea that doctors should understand it.
The bottom line is that some doctors think this and others think that, and what the patient gets is a lottery ticket. Either way, the lines of treatment for RLS/WED, which include the potential use of low dose opioids, are not for a psychiatrist to pursue. However, the psychiatrists should at least be aware of the treatments and all the counter-indicated medications, as there is a lot of them. In short, failure to carry on responsible discussions about the drugs is a sign of substandard treatment.
1.5 Disinformation
Perhaps Dr M could not understand my accent or hear me through my double masking. One might wonder why he raised the issue about noradrenergic types of drugs to begin with since we did not even discuss ADHD? He had binned the ADHD questionnaire that had been sent to me!
I came to the clinic to discuss a possible ADHD pathology, that’s all. Nothing more, nothing less. It was admittedly a rash decision on my part, but none of us is perfect. Since I now have valid diagnoses of physiological disorders, I did not expect to be told that it’s all in my head. I did not expect to get into a flaming conflict with an ableist and misogynistic man from Pakistan, and yet I feel that I walked right into the lion’s mouth. I was not even made aware that he had made a diagnosis after just one session. Contrary to what he claims, I never said that I wanted to discuss the diagnosis with him. How could I, when I was unaware that he had dished one out already after the first appointment? I honestly thought we were going to pick up the unresolved issues about medication, but instead I was hit with accusations of being a hypochondriac. I will explain this part in more detail below.
All in all, EM had no grounds for suggesting that “the interpretation of her symptoms in a broader sense may be skewed and her methodology for managing these may be flawed”. What broader sense is he talking about? What methodology is he talking about? In what way is my interpretation skewed? What does he mean?? He does not say, because he does not know. He’s spewing out non-specific non-arguments to make himself sound authoritative, but his opinions reveal nothing about me as a real, thinking human being and a person with a complex history. He says nothing about my actual way of thinking, or my methods. And yet he still believes that people will trust his opinion because they will believe him to be some kind of god of the human mind. This appeal to the authority of psychiatry is horrifying, all the more so as this charade was a parody of the true sciences of the psyche and the mind. And yes, I do actually know what I’m talking about.
In clinic, we did not discuss any complex matters as Dr M did not allow time for this. The superficiality of the investigation also conflicts with Dr M’s curious admission that “there may be genuine symptoms related to EDS and musculoskeletal difficulties”, which he does not specify either, although in the context of his inability to accept my disabilities, it would seem to be of the utmost importance to make a distinction between the ‘genuine’ symptoms and the ones he believes are ‘not genuine’. This is simply how logical deduction works, otherwise the statements are pointless assumptions, neither here nor there. Either way, I do not know how a normal person with some brain activity could be ‘mistaken’ about their chronic symptoms after a life time of suffering. Dr M’s statements truly make no sense, because ‘genuine symptoms related to EDS and musculoskeletal difficulties’ do not diminish over time, and they are considered serious disorders by the specialists in the fields. This is not like cancer that can even disappear. If someone really does have these disorders, then a much deeper and empathetic approach is warranted, rather than the flippant and authoritative assumption that women can’t have as much pain and fatigue as they claim. This is not the first time I’ve come across the idea that severe pain and fatigue in women ‘cannot’ have a physiological basis, and it should be pretty well known by now that this is an extremely prejudiced standpoint that’s causing millions to suffer from a lack of appropriate care. (This issue was even discussed at BBC Breakfast recently).
I’d like to point out that in his letters, Dr M uses the word ‘may be’ and ‘maybe’ so many times in his letters that it completely collapses his ‘professional opinion’ and makes him look like an imbecile who has no real understanding of any medical issues at all. Which, of course, is quite obviously true.
Why, at any rate, would Dr M blame me for ‘believing’ I have certain conditions while also admitting that I have ‘something’ along those lines but not exactly what I ‘believe’ I have..? He reports that I am interested in specific forms of treatment for certain conditions but I have absolutely no idea what he’s referring to as I did not discuss any treatments with him at all and don’t know what conditions he thinks I might have been talking about? What forms..? There aren’t any. He said, and I quote: “[…] she was interested in specific forms of treatment which she has researched for the conditions which she believes she has. But my opinion of her difficulties differs from hers [….]” I don’t know what his opinion really is, because all he says is that it differs from mine. It’s primary school level argumentation (‘My dad is better than yours’ style argumentation). So what other than slander does this sacred professional opinion amount to, really? All he has is a completely unsubstantiated and undefined ‘opinion’ that he’s pulled out of his… hat. His word salads are nothing but dedicated garble, otherwise known as codswallop. How can people like this have so much authority in determining whether or not a patient’s health conditions are real or not?? It’s a parody of ‘health care’, and a potentially deadly one at that because he is essentially trying to prevent me from accessing care in my old age! He certainly put the fear in me, and he knows it, too.
Dr M did not note down all the medication I was on at the time because he cut me short while I was trying to recall them. This is negligence since it would be important to consider drug interactions (assuming the doctor actually knows something about the medications to begin with, of course). Let me reiterate that all I wanted was to discuss the possibility of ADHD, nothing more, nothing less. Instead I got the label ‘hypochondriac’ stuck to my forehead, because in all its simplicity, THIS was Dr M’s ‘professional opinion’. Towards the end of the last session he shouted at me that ‘Hypochondriacs often start out with a real disease’! I was completely stunned because I had no idea that throughout the assessments, he had been convinced I was a stupid hypochondriac who was just doctor shopping and looking for attention. However, I was even more shocked that this was his brilliantly simple conclusion (and I mean it sarcastically). I don’t know how he thinks that EDS was just a little bit of something that then got better over time, while I somehow made it worse because of an overactive imagination?? When I complained about his aggressive outburst, he denied having confused hypochondria with somatisation disorder, and the ombudsman just shrugged and said that I had no evidence of this statement. The end result is that I will never go anywhere like this again without a witness and a recording device.
The reality is that I could be denied treatment in my old age because of his opinion. I’m a disabled person living on my own, and yes, it worries me. Why shouldn’t it? Health care in Wales is already exceedingly poor as it is, and I have already had a taste of prejudiced biases as outlined in the passages below. I am certainly preoccupied with survival, because I have to be, but no, I am not preoccupied with imaginary health problems. Luckily, my GP and many others do understand that my struggles to cope with daily life are completely real, but I am deeply shaken and worried because of the ‘red mark’ in my medical records. As I will explain later, these statements have already been used against me in court. I simply cannot believe some foreign prat gets any air space to voice his lousy education in psychiatry and hatred of women, but that is sadly an exact mirror of the state of the health services in Wales today. As I will explain later, I am myself educated in psychology and have a pretty clear picture by now of the amateur psychology that pervades so much of the health care in the world. Since I have a Master’s degree in psychology of religion, I’m practically a peer, and though I am unfit for work, I am rather an expert on beliefs amongst people who like to adhere to dogmatic belief systems. Such belief systems would seem to include psychiatry, which in my professional opinion, is namely an extension of the religious dogmas of old.
1.6 The reality
Let me just say for now that I have always been very clear about what my symptoms and conditions are, but it is difficult to explain complex issues when there is a shortage of time and co-ordinated care. I am thankfully under care at RJAH where my hEDS was finally diagnosed even though it had been hinted at twenty years prior by an expert. I have received at least the semblance of a more holistic and sympathetic point of view there. Most of the time, I receive respect. My previous rheumatologist recently wrote to me and my GP about a new insomnia medication that antagonises orexin, and he obviously wouldn’t do that unless he had fully understood my struggles in that department and really wanted to help me find a solution!
Only an extremely prejudiced person who won’t make the effort to look at my medical history with objective eyes would make sweeping statements about my symptoms and suggest that I am merely deluded. This is at any rate not a constructive and respectful discussion about my very real and, well, both ‘detectable’ and (at least currently) ‘undetectable’, physical health conditions. Nor is it a helpful discussion about mental health either, for that matter. While I do not have a ‘genuine’ mental illness, my mental health also matters. Why should I have to carry the burden of a completely counter productive and defamatory attack on my person such as the one I was subjected to at Fan Gorau? The scorn is quite detectable: it cannot possibly escape anyone who reads EM’s letters that he speaks about me in a horribly spiteful and disrespectful way. As usual, he uses the word ‘believe’ as soon as he can squeeze it in. For example: “Mrs Carpelan believed that she was correct in her assertion that all of her symptoms have a physical origin, that is their relation to her diagnosis of EDS and this belief cannot be shifted even with medical advice”. What medical advice would that be? Nowhere does he offer anything but his half-baked and utterly worthless ‘opinion’, and as such, it is a belief based point of view, not one that’s based in empirical evidence. He does not offer empirical evidence and examples, does not refer to science, and does not substantiate his opinions with sound logic. I’m very sorry if people are taken in by such nonsense.
Since all my main conditions are genetic, they do indeed have a physical origin even before we get into a discussion about the specific symptoms they give rise to all over the body. I tried to educate Dr M about the neurology behind my insomnia but he was not willing to listen because he staunchly believed himself to be the expert above all experts, in other words, like that of a god, his word was even above that of all the specialists who have diagnosed me. Unfortunately psychiatry is sufficiently vague to impress people with a poor frame of reference, and that includes a lot of medical professionals. The reality is that all the conditions that I have already, offer plenty of explanations for the ongoing and deteriorating symptoms that I have complained of, and there is no need to try and thwart and diminish them, and put them in the anxiety bag instead. While some manifestations of anxiety could potentially be seen as a co-morbid phenomena, this was not an occasion where I felt in any way safe to discuss such matters. Unfortunately, Dr M’s mannerism made me nervous, as it probably would anyone else, and since he was a shallow observer who wanted to pin me down for some kind of mental problem, he decided to interpret this as a symptom of ‘enduring anxiety’. Whatever he means by enduring anxiety is not clear at all.
When I saw the letters, I could see that I should have followed my gut feeling and not returned for another appointment, and that I was right in my assumption that he did not wish me well. He never considered any other interpretation than that I was just ‘somatising my anxiety’ and he even lied about my testimony in order to shoehorn this idea into his report (as I stated earlier, he claimed that I ‘admitted’ to somatising my anxiety, but I never admitted to any such thing. In any case I abhor the idea of an objective psychiatric assessment as some kind of bizarre confessional of personal failings!). I’m sorry, but it’s a cop out.
In clinic, Dr M came across as callous, disinterested, creepy, arrogant, misogynistic and unpleasant, and in his letters he sounds increasingly hostile and scornful towards me as a person. I felt subject to a form of character assassination. Yet his reasoning is so garbled, it’s difficult to make out what exactly he was trying to achieve other than the usual, i.e. wanting to pin me down for being a hysterical woman. He didn’t like my attitude as an educated woman, so he ruffled his feathers. The meaningless jargon is either strategic ambiguity, or then he’s simply not very bright (and he certainly did not strike me as intelligent). But let’s think about the hippocratic oath for a moment: first, do no harm. In contrast to this ideal, the diagnosis he was so eager to dish out does not serve any constructive purpose at all, in fact it has already been used against my person in a legal context for the purpose of soiling my reputation, and I thus have good reason to consider it a level of discriminatory hate crime.
Dr M’s assumptions about the way my main conditions manifest themselves in my daily life are completely misguided, if not entirely uninformed and presumptive. These ‘opinions’ should not be used for reference under any circumstances. While he would perhaps argue that he ‘observed’ a collection of ‘signs’ that added up to his ‘informed’ conclusion about my ‘health anxiety’, I can not agree with such vague conclusions under any circumstances. This is simply the unmethodical and prejudiced opinion of an unprofessional hyperbolist and not the carefully considered view point of an astute and diligent medical practitioner. I therefore want the diagnosis ‘somatoform disorder’ overturned and deleted from my medical documents.
1.7 A poor match
In the following I’m going into detail about the experience I had with Dr M, and the reason for this is that so far, more superficial analyses has not gotten the attention the issue deserves. I will also touch upon some other distressing experiences I’ve had with other health professionals on the NHS in the past few years. I apologise for my very lengthy explanations but this is my way of expressing my point of view as acutely as I possibly can in order to dispel the ambiguous drivel that seems to have strong foothold within psychiatric care. I readily admit that I may be wordy, but decades of struggles to be heard have conditioned me to nit pick. I hope my English is to the point.
It would seem that the battle I’m discussing is essentially a war of beliefs. EM says I have no grounds for believing what I believe, I say that he has no grounds for believing what he believes. My argument is that he is not trained to understand complex and interrelated conditions such as hEDS, spondylosisthesis, osteoarthritis, degenerative discs disease, carpal tunnel syndrome, trigger finger, meniscal cyst, WED/RLS, hyperacusis, tinnitus, fibromyalgia, IBS, vulvodynia, menopause, or even genuine co-morbid insomnia, and so on. In my encounter with him, he did not appear to acknowledge the co-morbid mental health challenges that arise alongside life long genetic health conditions. I’m painfully aware that chronic insomnia is considered a psychiatric disorder but it’s a dreadfully old fashioned way of looking at it. So many of us have been told by a host of biased practitioners to just get a grip. For Dr M, there could only be one explanation for my complaints, and it was rooted in the psyche. Ironically, I know a lot about the psyche myself, and I could tell he knew nothing whatsoever about it and was just playing mind games with me.
Turn up the radio static to 120 db and scrape some nails against a blackboard, and then shatter a huge panel of glass and let the shards poke the ears. Add a drill effect. Now see how you like it. Then try and imagine living with this in your ears 24/7. It never ends, and it gets worse at night. It has recently been so bad, my knees go weak. THIS is the reality I have to live with. It is not ‘delusion’ or some seed of a disorder that I have somehow increased because of ‘health anxiety’. It is simply very loud and obnoxious tinnitus coupled with pain. Tinnitus is a very common and typically enervating condition but for most people, it’s mild. Unfortunately, this is not the case for me, and I will never have peace and quiet again, nor will I be able to listen to ordinary sounds and music. People can’t even imagine what that is like. In addition, it’s the NHS that’s responsible for having made both the hyperacusis pain and the tinnitus noise even more unbearable than they were to begin with (I will explain this later). Yet it’s just one of many debilitating symptoms that EM took no interest in whatsoever, even though he appears to have a very strong opinion on them as a catchall for a unified collective phenomenon simply and elegantly called ‘symptoms’ (sarcasm intended). You would expect a person trained in psychological care to be attentive to the patient’s needs, but this was not the case with Dr M. I’ll give you two guesses as to what other than screeching noises has been keeping me awake at night since 2021.
I tried to explain to Dr M that the doctors genuinely do not understand these conditions. They are not taught about them in any meaningful way in medical school, if at all, and if they do know something, they certainly do not know the details. However, I didn’t know this at the time. All I knew was that a lot of doctors avoided dealing with them in whatever way they were conditioned in order to deflect from their ignorance. Dr M regrettably took my statement as a sign that he had now better try and demonstrate just how well he understands them - which obviously he did not. Pretending that you know more than you do, of course, is just another tool in the toolbox amongst doctors who feel the need to conceal their ignorance about unfamiliar medical issues. A GP’s understanding of the body and the mind is superficial, while a consultant’s understanding of the human being is typically narrow. Why is this hard for some doctors to acknowledge? What superpowers are they trying so desperately to prove?
In order to confirm his bias, and maybe because he liked things black and white, Dr M decided that what I really meant was that no one ever believes me. This allowed him to quickly put me in the bag of delusions. The truth is that he heard what he wanted to hear, as this is not what I tried to communicate at all. He was not interested in my actual real life experiences with dismissive doctors, as this would undoubtedly have made his job a lot harder. Unfortunately, I don’t do well under pressure. As I said before, as a symptom of the disabilities I suffer from and the fact that English is not my native language, my brain freezes in stressful situations, especially when I’m subjected to an aggressive third degree, which it felt like when Dr M bombarded me with snappy comments about my sleep problems and the drugs I have to take. No normal person would expect this to be a psychological way of approaching a patient in a mental health facility. It’s not court or a police station, after all.
As I will explain further down, many doctors have believed me and they have conducted the correct diagnostic tests. They have thus diagnosed me in accordance with strict diagnostic criteria. I have diagnoses to show for. While the criteria for many complex disorders such as EDS do keep changing and are nowhere close to being perfect, I have nevertheless fitted the existing ones just fine. What I tried to explain to Dr M is that there is a problem with health care in general. Yet at this point Dr M took it upon himself to confirm my poor experience and to make the problem much worse than it already is. He started to proselytize me into believing that the problem is with me and not with the health care. In other words, he tried to gaslight me. Gaslighting happens to countless people with the conditions I have almost as a rule, and it is a global disgrace.
Dr M’s spiteful and humiliating way of dishing out a nonsense diagnosis of imaginary health concerns left me deeply traumatised. My opinion is that he deliberately misunderstood me and didn’t like how I presented myself as an educated older woman. We obviously disliked each other intensely. I know I disliked him and it is clear from the disrespectful way he wrote about me that he felt a need to put me in my place. The communication was so fraught with problems, that even with the best of intentions, no one could possibly believe that such a conversation could form the basis for an unbiased and fair health diagnosis with the aim of instigating positive changes in my life. Yet the people I have complained to, have not wished to acknowledge the very basic problem of a very bad match between myself as a patient and Dr M as the practitioner. They have not admitted that there is no such thing as a positive and objective evaluation when the chemistry between two people is that bad. My feeling was that Dr M didn’t want me alive, he wanted me eliminated, and you may well scoff and say that I’m exaggerating, but this is how his attacks and mockery came across. I ask that my feelings should for once be respected and not trivialised by following Dr M in his footsteps. He is simply not the ultimate authority that he pretends to be.
I found this man very unpleasant and downright creepy, and he was somebody I would most definitely go to great lengths to avoid in my normal life interactions. He was absolutely the opposite to the sort of person I would open up to in a psychotherapeutic setting, and it haunts me to this day. The only thing we had in common was the fact that we’re both human beings. That’s all. Unfortunately I must say that in my entire life, I have never met anyone that struck me as narrow minded and imbecilic as this person. He even failed to understand metaphor, figure of speech, and subtext! He succumbed to countless logical fallacies and biased opinions in his report about me. He seemed completely and shockingly devoid of any culture and good manners. In short, he interpreted figure of speech and suggestive phrasing literally, but also twisted many of my words to mean something else entirely. Why? It suited his agenda, because he wanted me in a specific little box that could be put on a shelf and forgotten.
The result from Dr M’s ‘observations’ was the composite portrayal of a person I don’t recognise as myself in any way whatsoever. Despite having endured a fair amount of medical prejudice in the past, I’ve never felt simultaneously this misunderstood and violated. I will never attend a random mental health practitioner again. The NHS doesn’t even hold a register of their counsellors, so there is no way of choosing a good match. The mental health services are a disgrace and people are treated like animals who are not entitled to independent thought.
1.8 Misdiagnosis
One of my main complaints about the assessment with Dr M is that he did not believe I have any neurological illnesses. Yet it would appear that all my health conditions are neurological at their base. He also believed that my ‘symptoms’ do not match my ‘physically detectable conditions’. It is not clear what symptoms or conditions he was referring to. What is a ‘detectable condition’ anyway? There are many different ways of detecting a condition and he wasn’t in the position of conducting any such medical investigations. Instead he used strategic ambiguity and an appeal to his alleged education in psychiatry to try and sound as if he had a handle on real medicine, which he obviously didn’t. Some would call this the talk of a big Ego. As a consequence, he jumped to grossly uninformed conclusions that jeopardised my reputation as a genuinely ill and disabled patient.
In his letters, Dr M asserted that I seem to believe that I have certain conditions (again, we do not know what conditions he is talking about), and completely dismissed the idea that I have plenty of genuine diagnoses and evidence for the conditions that I say I have. Initially, he seemed keen to focus on the insomnia, but it still remains unclear to me what exactly he was trying to establish. If by ‘symptoms’ he meant insomnia, pain and fatigue, then these symptoms can be quite adequately explained by the diagnoses of hEDS, WED/RLS, osteoarthritis, fibromyalgia and hyperacusis, for example. WED/RLS, and many of the problems can also be linked to the kyphotic curvature and the spinal fusion surgery I have had to go through that has led to degenerative disc’s disease, and potentially also to the foot fusion surgeries I’ve had. To boot, I have had a botch hysterectomy recently in 2019 that worsened some health issues to a point where I received a substantial settlement through ‘Redress’. I endured real physical torture and had sepsis several times. I have plenty of evidence that I am not ‘somatising my anxiety’, nor am I a hypochondriac, and these words should not appear in my medical notes. It is gaslighting supreme.
In other words, Dr M was happily venturing into areas of medicine he had NO knowledge of at all, and he certainly knew even less about the latest research in my health conditions that attempt to explain why they occur in the first place (it’s a movement disorder, so it involves excitatory neurotransmitters such as dopamine and glutamate). I should add that he did not demonstrate any understanding of the physiological and psychological basis for insomnia, quite the opposite, in fact. He thought it was just something to do with mood. This type of arrogance should be a criminal offence, but he and the likes of him seem to feel they can get away with it because there is clearly no regulation whatsoever of the mental health services. He made hasty assumptions about my personality based on some perceived parental neglect and childhood stress, and then assumed simplistic psychiatric causation without further tangible evidence or an in depth investigation. I was not given any opportunity of explaining the letter I had introduced myself with, and he simply took and copied and pasted parts of it into his letter to my GP. He also thought I was ‘self-medicating’ on magnesium and ‘manipulating’ my medications, but these accusations are simply ridiculous and deeply disrespectful. How can anyone be accused of using supplements? How do you manipulate medication? Imagine if you used an expression such as ‘adjusting the medical regime’ instead - what a difference this would make to the level of respect for the patient - doctor relationship that’s automatically implied. We did not even discuss my medical regime in general, and unless he is clairvoyant, I wonder how he can know what I do every night?
He offered to trial low dose psychotropic as an alternative to a sedative drug I take at night although the two are not at all equivalent. I had a bad reaction to it, and so I tried to take less of it before I quit altogether. This solitary incident seems to be the basis for Dr M’s assumption that I ‘manipulate the medications’. It is a horrid way of describing my efforts to ingest a powerful drug. I’m sensitive, and small amounts of this drug still affected me. He did not believe it. Why? Because a man with a bigger body than mine would not be so sensitive, perhaps? After all, most medical research is based on how men respond to drugs. There is research suggesting women respond in very different ways to drugs.
In general I would suggest that Dr M did not have the medical expertise to understand that finding the optimal regime for the complex conditions I have takes trial and error and adjustments, and this in turn, takes a lot of time and patience. Since I wasn’t interested in an antidepressant, he quickly gave up and decided I could just go on with the regime I already had in place. My attempts at explaining the problems with this fell on deaf ears. I had entered menopause and old age, and my needs had changed with the changes of my body AND the progression of the genetic diseases I have. His dismissal of my experience reveals a deep ignorance about the complications that come from my conditions, and so it would seem that he was just trying to get rid of me as fast as he could. In conclusion, he failed to listen, lied about my testimony and twisted my words, aggressively calling me a deaf self-medicating and manipulating hypochondriac. Charming, is it not? His letters say it all, and you would have to be pretty cold and disinterested not to see it.
Before anyone suggests that I should seek a second opinion, I would just like to add that I am unable to do so because the investigator from a major hospital made it very clear that everyone at the mental health clinic ‘agreed’ with Dr M diagnosis. They concurred even though they had never even met me and had never read my medical records. This comment is really an intimidation. First of all, this prejudiced cohort of so-called mental health ‘carers’ should be ashamed of themselves and take time out to study the physical conditions in question before making hasty assumptions about the way they manifest and impact a patient’s life. Secondly (whether intentional or not) these people essentially ganged up against me as a group in order to prevent me from seeking more help. By throwing their opinions around so flippantly, they thus threw me under the bus, but also indirectly admitted to being as useless as Dr M himself. So even if I could, I would never put foot in that clinic again. The place itself was unpleasant enough as there was a radio on and practitioners were slamming heavy doors, and all of this aggravated my ear pain. But worse than that is the sense that this is not a benevolent gang of practitioners. Since they all so readily believed that I was doctor shopping, one would assume they would not be respectful of a quest for more answers. The door to their services was thus effectively shut unless I ‘admitted’ to being the hysterical and delusional woman Dr M made me to be, and came crawling for psychotherapeutic help with the alleged problem of ‘somatisation’. He also knew that I had a thing about feeling rejected and so made sure that I would feel as rejected as possible, which is sadistic. If this manner of cornering patients is not manipulative then I don’t know what is. Once you’re branded, you’re branded. The testimonies of similar experiences that I hear from other people contribute to the loss of all my remaining trust in the NHS.
In summary, I have several severe disorders of physical origin with neurological implications, and I would please ask health practitioners to familiarise with these conditions before jumping on the conclusion that I’m ‘just anxious’, or even that I am ‘abnormally preoccupied’ with my illnesses. These disorder can all potentially be torturous, and I don’t have it easy, nor is it fair for some uninformed charlatan to suggest that my version of these conditions must necessarily be trivial because somehow, for some unknown reason, it just ‘can’t’ be genuinely serious. In addition, I am being vilified for being ‘preoccupied’ with my body and wonder why it is of any consequence to anyone else? There can only be one practical reason this argument would ever creep up, and it is to prevent women from accessing care. How often women hear this entirely unsubstantiated point of view! I thought, or hoped at least, that Dr M respected my physical diagnoses, and so I shared confidential data with him. Therefore, when I discovered his contrarian writing, the rug was pulled from underneath me and left me with a never ending trauma that I cannot seem to shake off even after almost four years! Now that is something we should discuss, but apparently no one thinks it’s important.
1.9 Subverting the normal
The simplification of anxiety disorders under the general term ‘anxiety’ does not do the term anxiety and sufferers of anxiety any favours either. I think it’s common sense that care should be making a distinction between different types of mental distress. As for anxiety, this is an issue that comes in many forms, and its manifestation can be quite complex (for instance, social anxiety is different from agoraphobia, and so on). Unfortunately, it’s the term ‘anxiety’ that creeps up everywhere in modern health care. To suggest so readily that the majority of my symptoms can only correspond with anxiety is thus emblematic of seriously substandard and positively archaic medical practice that targets women in particular, and does not take the time to perform a proper investigation. I have compared notes with a highly educated friend who was diagnosed with a genuine type of anxiety by professors of psychiatry, and I could not understand his experience, nor did he think I was genuinely anxious based on what I told him about my behavioural patterns. I know this is not evidence by any stretch of the imagination but I am mentioning it as it drives home the idea that mental health is anything but simple and that the real issues evade superficial trends within psychiatric practice. I absolutely do not have abnormal thoughts, feelings and behaviours in regard to my health conditions. What would they be, I ask? I’d like to point out that Dr M offers no examples of such alleged mental processes. You might as well say that all women in menopause are ‘somatising their anxiety’. And sadly, that is not far from the truth. Apparently people with a womb are still considered prone to hysteria.
It is completely normal to take supplements and attempt to avoid heavy medication, it is completely normal to try just about every trick under the sun to get sleep in order to get through the next day, and it is completely normal to feel some distress when one is not able to live a normal life because of multiple debilitating AND diagnostically confirmed health conditions. It is also normal to suffer from co-morbid insomnia when so much else has gone wrong in the body and the nervous system in particular. It is not a case of ‘catastrophising’, it is a case of trying to survive. Without sleep, we will die, and we need it every day just as we need many other things that we often take for granted. We all have life issues to deal with, but you don’t get a write up in your medical records every time you have an emotional reaction to a challenging life event. How far do these doctors want to go in subverting the normal, and why?
Let me just remind you that the collagen that fails to perform in a normal way in patients with EDS is present everywhere in the body, so there is no excuse for a failure to understand that such multi-systemic conditions are life changing. I have demonstrated by my life choices that I desperately wanted to succeed in life, but my illness has prevented me from forming a career. Dr M does not present any valid arguments for his assumptions, in fact his assumptions are ridiculous, uninformed, and ultimately completely meaningless. For instance, let us go back to the point where he claims that I don’t have detectable disorders to explain my symptoms and let us ask what it means to have symptoms that correspond with ‘detectable illnesses’? A blood test and a CT scan are by far the only ways of checking for endocrine and neurological disorders, and medical scientist will readily admit that many tests have simply not been developed yet. In other words, there are symptoms of diseases that cannot be objectively measured, and this is not proof that the illnesses don’t exist, only that medicine doesn’t yet have the tools to assess them. From a more philosophical point of view, one could say that a symptom is in itself already a manifestation of an illness, and thus makes the illness detectable. Either way, it is for the medical experts to evaluate the pathologies and their manifestations, not for vindictive locum psychiatrists who want to prevent older ladies from getting medical support in their old age. Dr M makes massive, unsubstantiated claims about my psyche and the conditions I suffer from that can easily be overturned, IF ONLY SOMEONE WOULD ACTUALLY READ HIS GARBLE AND TAKE A LOOK AT MY MEDICAL RECORDS.
Even the dreaded DSM-5 states this point: “The reliability of determining that a somatic symptom is medically unexplained is limited, and grounding a diagnosis on the absence of an explanation is problematic and reinforces mind-body dualism. It is not appropriate to give an individual a mental disorder diagnosis solely because a medical cause cannot be demonstrated.” Dismissing unexplored regions of medicine is precisely what Dr M decided to do, and all because he was so adamant that I did not have the conditions I said I had that he had to make it true. He was so sure of himself, he did not bother to educate himself about said conditions. In my first complaint about him, I pointed out that he demonstrated an archaic belief in mind-body dualism, but I won’t go into it here. I can show you my previous complaints if required.