How I was subjected to medical gaslighting part 2

I once again apologise for the length and detail of my article, but I was not being listened to and had to dig deep in order to flesh it all out. It was a whole lot more difficult than one would imagine, and that, in my opinion, is an indication of all the nonsense psychiatry gets away with. Above is a photo of me with the in-home sleep test ‘NOX’.

2. THE EXPERIENCE

2.1 The gaslighting

In 2020 during Covid lockdown, like many people I was thinking about my life and past, and in the process I came to question whether maybe I had suffered from undiagnosed ADHD throughout my life. Everyone was thinking about illness at the time and mental health questionnaires were popping in by the dozen, so it’s hardly surprising that I was a little bit preoccupied with this idea at the time. As a psychologist and a polymath, I’m genuinely interested in both the body and the mind. There were certain pointers for an attention deficit disorder, but I admit that I was a bit rash in asking for a referral and would have been better off thinking about it by myself for longer. One thing I would like to point out is that though I was being very careful, I would never have gone to see any doctor in the year of Covid if I was really a hypochondriac. This was not ‘any year’. This was 2020! But it was a very bad idea because I could not even see the practitioner’s mouth and read his lips. All I saw was just his sleepy eyes.

Despite Covid and many recent tragedies, back then, I was not mentally in that bad a place. The tragedies since 2014 include 1. my husband’s death following a misdiagnosis (I found him dead in his bed), 2. my mother’s death in 2017 due to pancreatic cancer (she was diagnosed the day before my husband died), and 3. my father’s death back in Finland in 2019. In addition, there was the 4. the euthanasia of my three cats, one after the other. My whole family was now dead so I found myself completely alone. Then there was 5. my own traumatic near death experience following undiagnosed damage to my ureter during a hysterectomy performed by a consultant from South Asia. Following these traumatic medical experiences, I had to start a law suit, which was incredibly stressful, too. Not long after this, 6. a comedian shouted into his microphone and busted my ears (so there’s a comedian out there somewhere who doesn’t know he ruined my life). I now have both chronic ear pain and extreme sound sensitivity, as well as a 120 dB screaming/screeching sound in my ears, and it’s not likely to improve. Then there was Covid, as well, which isolated me for four years, though I didn’t personally suffer from it. And if all this wasn’t quite enough, there was Brexit to boot, which meant I had to apply for permanent settlement status. Following all these challenges, I was ghosted by a lot of people, because that’s just what people do when you appear to have problems (so yes, I felt rejected. You know, I’m a foreigner, and being a disabled outsider is not easy). Yet, despite all this, and more, I was coping by myself and was trying to maintain a positive attitude. However, I had entered menopause, was using HRT, and my insomnia was now getting worse. I had to make new efforts to deal with it, and I tried to avoid more drugs. But there was more to come. The next traumatic event was 7. a visit to an abusive psychiatric practitioner. But sure, by all means, burden me with more troubles. I’m sure it’s completely normal for a psychiatrist to expect women to take on additional scorn and misery, because we’re just stupid and weak and deserve it, don’t we? It’s normal to be told we are just ‘somatising our anxiety’. Isn’t it? 

Let me explain what I DO have that’s wrong with me. I have diagnosed Ehlers-Danlos Syndrome Hypermobile type (hEDS), diagnosed fibromyalgia, diagnosed hyperacusis and tinnitus, diagnosed refractory Willis-Ekbom Disease (Restless Legs Syndrome. WED/RLS), diagnosed insomnia, diagnosed spondylolisthesis with degenerative disc’s disease, diagnosed osteoarthritis, diagnosed carpal tunnel syndrome, diagnosed IBS, and diagnosed vulvodynia. There was arthritis in my spine already in my teens. My joints frequently pop out of their sockets (it’s called subluxation), so I have to remain in control of my body. I have problems like trigger thumb and meniscal cyst and so on. I used to be extremely agile and quite athletic, and I hate to be sedentary. But these days I have to constantly remind myself that I mustn’t throw my limbs around because they will simply come off. I drop things and trip over things and my judgment is not what it used to be. People with my disorder are frequently called ‘dramatic’ and ‘hysterical attention seekers’, but the problem with dislocating and subluxing joints is very real, and very painful. All my major joints have this tendency so I have to mind my every move to prevent it from happening. This I cannot help! My pain and fatigue were frequently laughed at by medical practitioners when I was younger, and I was asked to visit the psychiatrist because the prevalent myth was that hypermobile joints could not cause pain, and so the problem ‘had’ to be at least partially in the head. 

Let me underline that a very extensive fitness to work assessment was conducted in 2002 (the Finnish system is very different from the UK and involves a whole team of specialised assessors). It was recognised that I had a serious spinal problem that was causing discomfort, and rather than giving me a somatisation diagnosis, the fitness for work assessor team opined that there were ‘psychological factors in relation to somatic diagnoses’. That was true in the sense that the somatic issues were so bad, I had to seek a disability pension. EDS was not considered a diagnosis at that point. Yet the fibromyalgia and the EDS were soon recognised by people such as Finland’s top orthopedic manual therapy specialist - OMT is the only physical therapy that’s recognised by the Finnish equivalent of the DWP. The fibromyalgia was then diagnosed by the country’s foremost expert on fibromyalgia, a consultant physiatrist. I lived in the capital of Finland so had access to some of the country’s foremost practitioners. Some issues such as the genetic hEDS were diagnosed at RJAH in the UK decades later in 2018, and the fibromyalgia was re-diagnosed. It’s obvious that these pathologies aren’t going away, and I therefore do not understand the rationale that dictates a need to continue to put me down as a hypochondriac. How is pursuing the correct diagnoses a sign of delusion? I am 58 - of course I am going to have an increasing number of symptoms of deterioration of the diseases that started early in life, especially when some of the medication has been wrongly prescribed as it has aggravated WED/RLS.

As noted also by my GP, I suffer from continuous debilitating co-morbid chronic fatigue,  which is very common with the disorders I have (it may or may not be genuine ME/CFS, as no one understands the pathogenesis). I tried to explain to Dr M that I have this problem, but he snapped at me and told me to stick with ‘diagnosed’ issues. I don’t know why, since various symptoms accompany diagnoses and usually have to be spelled out separately since they vary from person to person and affect the patients’ daily lives in different ways. It was clear that to EM, talking about specific undiagnosed symptoms was not permissible, and a sure sign of delusion. Yet after shutting me down like this, he refused to listen to the actual diagnoses. I would like to point out that chronic fatigue is nevertheless a very common co-morbidity for people with hEDS, and it is very much central to my personal experience of the disease. The fatigue started in early puberty and progressively increased over time, and you cannot understand my life without acknowledging the part the fatigue has played throughout my life. I’m dragging my body around and it’s horrible, and I would do anything to feel energetic, but pushing myself is not helpful. I have even done the three-week residential course for fatigue and pain. However, I would like to reiterate that all the conditions I have been diagnosed with perfectly adequately explain my symptoms, and none of them are psychogenic. If I ‘believe’ I have certain conditions, it’s because the consultants also ‘believed’ in them.

In spring 2020, was referred to a so-called ‘ADHD clinic’ my then GP, which I first attended sex months later. The consultant was a locum, Dr M. Locums are worrying as they are not likely to take an interest in the community they work for temporarily. Based on the name, I expected a British doctor and that the communication would not be too difficult. Instead I found that this man had a very strong foreign accent that I was really struggling to understand. Like I said, I am not native and I also have a hearing impairment now, although it is not hearing loss. I suspect that despite his name, he was from Pakistan. I myself am a Finn, so I have an accent as well. I don’t think that talking about psychological issues is necessarily a very constructive thing to do in anything other than one’s mother tongue, and in this case, talking to a younger man from a foreign culture with an accent was a complete no-go. It takes me a long time to think of an adequate expression for certain experiences, especially ones that are connected to personal challenges.

A good psychologist or psychiatrist would respect my limitations as a foreigner and show gentle patience, and perhaps that would get us somewhere in the end. But Dr M did not show a shred of empathy. He was possibly the most callous person I have ever met. He cut me short and snapped at me time and time again. In addition, as I explained before, I suffer from brain fog, and this also makes me lose the right words to explain things adequately, especially when I feel put on the spot. In addition, my hearing impairment is severe hyperacusis, and it causes extreme sound sensitivity. I have seen two ordinary audiologists, and also had a long report from one witness expert about this disorder. I suffer from a severe case of obnoxious tinnitus as well, which is extremely distracting and often pretty hard to hear through. The sound sensitivity means I have to use ear plugs to soften harsh sounds, and this makes all communication even more difficult than it is already. I can’t hear other people that well but I also can’t really hear myself, which is very disconcerting and embarrassing, and puts added strain on all conversations. I’m a polite person, in fact I come from an aristocratic background and certain behaviours are considered vulgar. I have not been brought up to talk about illness or show negative emotions with strangers. Most of the time I end up politely guessing what people say rather than asking them to repeat themselves ad infinitum. As if it wasn’t enough that I am foreign and brain fogged - now I have all this to destabilise my confidence, too. I have recently realised that it is no use trying to cope by myself, and so I try and find help, but this is not often available. I do not have ‘friends and family’ to help me as companies often like to suggest when they don’t wish to adapt to my disability needs (my family is all dead and my friends too old or too far away, just to make it clear, that I am not an unsociable person).

During the interview, the consultant and I sat metres apart due to social distancing, I was double masked and the doctor wore one mask. I could only see his eyes, and they were sleepy - ‘the lights were on but nobody was home’ came to mind - and he parroted nothing but tired old cliches. Because of all these difficulties, the communication was both laborious and deceptive, and I was at an obvious disadvantage. I know what I did hear, but I also missed some of his mumbles. To have this kind of sensitive exchange during Covid with masking and social distancing was in itself complete madness, and my optimism about being able to handle it despite the hyperacusis, was naive. I so wish I had not made the effort and stayed home.

There are certain ‘criteria’ for diagnoses such as somatoform disorder and FND (Functional Neurological Disorder) that point to extreme prejudice against people who are sensitive to pain and fatigue. It has often been said in official statements that people who match such diagnoses tend to be poorly educated, young lower class women who do not exercise and appear to have nothing better to do than collect piles of medical files about their imaginary illnesses. I find these types of classifications HIGHLY objectionable and a form of disability discrimination that has a lot in common with racist agendas. It is very worrying that so many people in positions of authority prefer to turn a blind eye to this type of dehumanising labelling and categorisation. As it happens, I myself am neither from a lower class background nor am I poorly educated, I am elderly, and I follow a strict daily work out routine. I’m in fact highly educated, multi lingual and multi talented. I am also a white woman from one of the most egalitarian societies in the world, which I do not believe anyone would dispute. Amongst other degrees and diplomas, I have a Masters degree in psychology of religion, philosophy and art history. I am specialised in belief systems and certain forms of manipulation, and I can sniff out forms of religions at a distance. I would now have a PhD and a career if my health had allowed it, but I sadly had to give it up. The point is, I shouldn’t have to defend myself in this way! So what if I was lower class, black, uneducated and overweight - there are lots of people with EDS or fibromyalgia or autoimmune diseases who find themselves in such vulnerable social positions because of the crippling nature of their disease. To use people like this as a measure of health related mental illness is frankly sickening.

And yet, I was still optimistically trying to reach out and see if there were any new options out there for me. Although I suspected that medication wasn’t an answer, I thought I might as well go and discuss the potential ADHD and the WED/RLS now in case new treatment options show up later on - that was my honest reasoning. But instead of understanding my dilemma, Dr M mocked me when I explained that I had also been referred to see a neurologist that year. This referral was for WED/restless legs syndrome, but he wasn’t listening: ‘What are you going to say when he says there is nothing wrong with you?’ he confronted me, evidently trying to make me feel unsure of my motifs, and shut me up and to destabilise me. His own version of this exchange can be found in his letters. He actually had the audacity to bring my neurology visit up as if to demonstrate how clever he was to offer a counter argument for my upcoming visit there. He had convinced himself that I was just ‘doctor shopping’ and imagining my symptoms, and he tried to sound authoritative by using the word ‘when’ instead of ‘if’. In other words, he was trying to put me in my place as an irrational individual who should not even attempt to take their health in their own hands. 

I don’t know what he thought I was going to see the neurologist for since my explanation seems to have passed him by completely. The exchange was totally bizarre since I had already been diagnosed with WED/RLS by a GP, but I still needed to talk to a specialist about the options for medication that my then GP did not feel confident to prescribe. There is nothing strange about this at all. So why did Dr M think that the neurologist would refute the diagnosis from my GP and assume that I was just looking for more ‘attention and reassurance’? Surely that would be patronising. WED/RLS is absolutely not a simple problem, and in view of the opioid based drug regime that’s usually recommended for refractory WED/RLS, I thought it better to have plenty of evidence to show for. As a result of investigating potential sleep apnoea, which is common with people with EDS, I also sought support for the diagnosis of nocturnal restlessness at the local ‘sleep clinic’. In other words, Dr M was just harassing me for no reason, and maybe his plan was to write a kind of letter that was indeed going to put the neurology practitioners on the fence about me, thus ‘proving’ his theory!

And perhaps now that I am complaining with such ardour, other males and proponents of the Freudian ‘hysterical woman’ theory, will consider this more ‘proof’ that I am, in fact, merely a hysterical female. Perhaps they will say that the fact I voluntarily stepped inside a mental health facility is proof that I’m unhinged. They will not consider that I went there to discuss ADHD, which is not really a mental illness, and I wasn’t at all prepared to discuss my co-morbid insomnia, which is not a mental illness either. They might also say that my pain and fatigue is proof that I’m mentally unsound, which is obviously absurd. And what if I really was mentally ill and was treated like this, as if it’s a character flaw? I can’t imagine the horror of not getting sympathetic care when you really need it. All of this is disgusting. But whatever they say, I do not take kindly to people transgressing my personal boundaries and promoting ableism, gender discrimination and medical injustice.

It’s possible that the ADHD like traits in me can be explained as symptoms of RLS, and this should have been discussed in this so-called ‘ADHD clinic’. (The name makes me cringe because it was anything but). To fail to do so is medical negligence. Let me just reiterate that I have physical disabilities in the form of a severe kyphotic curvature of the spine with fused vertebrae, feet deformities with several fusions, and that I also suffer from subluxations of all the big joints and osteoarthritic joint problems related to hEDS. In other words, I’m actually a ‘cripple’. I was awarded permanent disability pension in Finland in 2001. Ironically, the doctor who agreed to the pension at the time said that my back problem was less important than my apparent distress because ‘so many people have back problems’. In other words, he made it clear that chronic illness was a ‘competition’, and I could not be seen as disabled enough because I did not meet any existing criteria. EDS was not considered a diagnosis and hypermobility was not understood as a complex disease that typically gives rise to pain and chronic fatigue. One would think that attitudes would have changed in 23 years, but little has changed. Apparently some doctors now accuse patients of hopping on the bandwagon of a ‘trendy disease’ they found on social media instead of admitting that all these individuals have simply remained undiagnosed because of medical incompetence. It is not our fault as patients that a lot of people have back problems, pain and fatigue and so on, and that the doctors can’t fix us. Yet we are made to feel that we could have somehow averted these genetic issues (perhaps by not being born?). As for my mental health, well, I am no more depressed and anxious than anyone else with life long chronic diseases who have had to give up on all their talents and dreams and focus on basic survival from day to day. I’m resilient, but I too, have my limits.

I now have 120 dB screaming radio static type noise with elements of ‘nails on chalkboard’ and other painful sounds and sensations in my ears all day long. It’s enough to drive anyone to the brink of suicide, and many with this disorder do in fact end up killing themselves because the torment is absolutely terrible and there is no hope of relief. Those of us with hyperacusis are typically stuck in our homes, suffering nonstop. WED/RLS is equally difficult to get help with as doctors don’t know anything about it even though it’s one of the most common neurological disorders there is, and it can drive people to end their lives, as well. Both conditions are thought to possibly originate in dysfunctional glutamate, since glutamate can increase the sensation of pain, and also acts as an energy source. Glutamate excitotoxicity is a problem with a host of chronic conditions that plague people day and night. Glycine regulates glutamate, and from my trials with amino acids, I have discovered that glycine is a great big problem for me. Glycine is a component of collagen, so this does not come as a surprise. In its role as an inhibitory chemical, glycine also regulates sleep, but this is further complicated by its activity as a serotonin agonist. What I want to know is why I am not allowed these insights and am instead scornfully described as a delusional and obsessive individual who ‘self-medicates’ on supplements and ‘manipulates’ their medication? Surely the only entity I am hurting with my investigations is the psychiatrist’s ego? 

Of course, doctors like Dr M seem to think that normal people don’t get ‘preoccupied with symptoms’ of pain and fatigue. Perhaps when Dr M and the likes of him suffer from a headache, they take a pill, it works for them and then they think no more of it. Although this is a subjective experience and there is no solid scientific backing for their assumptions, they subsequently come to believe that pain is a much overrated issue that people are just whining about. The truth, i.e. what the actual research suggests, is that men don’t suffer from chronic and debilitating pain as often as women do and therefore have a tendency to downplay women’s pain. The neurology of pain is nevertheless complex, and it hits some people more than others. If you haven’t suffered yourself, then you have nothing to say about it. 

Everything is put down to stress or anxiety these days. Apparently blaming a patients’ physiological problems on the workings of the psyche brings relief to the poor overworked doctors’ psyche. Let me point out first of all that stress is not the same as anxiety, yet doctors appear to be entirely ignorant about the difference and like to insist that stressed women like me are mostly just anxious, hysterical messes. To be nervous is not to be anxious either. It is clear to me that I get easily stressed, which is very typical with fibromyalgia, and I wrote this in my introductory letter to Dr M, but it is not at all clear that I have some kind of ‘enduring anxiety’ like Dr M liked to believe. There is also no direct connection between current episodes of stress and the physiological symptoms that I suffer from now, and it is silly to make generalised assumptions about such causation. How do you even know if the chicken comes before the egg? Some ongoing health problems such as fibromyalgia may well stem from chronic stress in the past, but extreme caution should be exercised when hypothesising about such links since there is a high risk of committing errors of judgment that amount to nothing but pseudo-scientific quackery. Similarly, fatigue can cause depression just as depression can cause fatigue, and a failure to see that all things can be seen from two sides is a sign of misguidedness and poor deductive abilities.

Yet despite all of the evidence of physiological disorders that I have collected over a life time, Dr M refused to hear about them and decided that I am delusional. He opined that I ‘believe’ that my problems are physiological rather than psychological because apparently, he was keen to gatekeep a psychiatric point of view that prioritises psychological factors above physiological ones. In fact he even sounds really vexed in his letters and seems to indicate that I’m a lesser human being because I refused to accept his ‘medical advice’ (“[…] 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”). I have no idea what ‘medical advice’ he thinks he has offered me, as far as I’m concerned, he only tried to coerce me into psychotherapy for something he believed I suffered from. There is nothing in the letters to suggest anything deeper than that. He didn’t offer real medical advice because he didn’t have any. Strictly speaking, you don’t give medical advice if there is no medical condition to advice about, so he’s contradicting himself again. To put it bluntly, he just seems to have decided I have piss in the head because that suited him better than admitting that I actually knew something about neurology that he didn’t. He didn’t even know that melatonin is synthesised from serotonin. When investigated, he denied suggesting that I was stupid, of course, but there was no mistaking what he originally thought since he recorded it in his letters with great hostility. I would suggest he’s just projecting his own inadequacies on me. He probably realised that I thought he was an idiot, and decided to take his revenge, like men do when they cannot stand up to a strong woman.

I most certainly wouldn’t be here today if I wasn’t mentally resilient, and certainly would not be living in the middle of Wales. Yet all this talk about my ‘beliefs’ and my ‘somatisation’ is designed to make me look weak. Now I’ve also been struggling with menopause, for which I have received no real help at all. There are many symptoms related to menopause that male doctors scoff at, and they can be severe and cause quite a lot of concern. I have also found that hormone replacement therapy isn’t some innocent ‘supplement’ type of therapy, and it has messed with my other conditions, for instance WED/RLS. It’s not even reported in Dr M’s letters. When I was diagnosed with hEDS in 2018, I thought the gaslighting would finally end, but it didn’t. With age I have also become extremely sensitive to the side effects from medications, especially serotonin and dopamine agonist. The unnerving decreased tolerance over time does not seem to be unusual as the nervous system naturally changes due to senescence. In recent years I have vomited in hospital, even when everything was done to avoid post surgery nausea e.g. by using nerve blockers and IV anaesthesia. I can’t even use the conventional medications for RLS, so I now have to take a low dose opioid as the least offensive, yet still extremely troubling option. (Having said that, the experts no longer recommend DA agonists for WED/RLS as they may cause permanent damage to dopamine receptors, so I’m lucky to have avoided them).

2.2 The incompetence

It’s clear to me now that Dr M didn’t even know what RLS is, and like so many other doctors, the wannabe neurologist I visited included, he assumed it’s just ‘some minor annoyance in the background’, something you can just ignore if you put your mind to it. No you can’t. Serious WED/RLS keeps you awake whether you like it or not. It’s also possible to have additional insomnia, and that makes the problem even harder to treat. WED/RLS is also a condition that is well known to be aggravated by a long list of medications, supplements and foods. Serotonin agonists are often the worst offenders. But Dr M didn’t even ask how WED/RLS affects me. He clearly also didn’t know that the official name is Willis-Ekbom Disease and probably thought I made the name up, too. In reality, it is NOT a psychogenic illness. In many cases it’s so severe it causes suicidal ideation. An estimated 10 % of the population suffer from it, and 1-2% in a very serious way, many because they have been given damaging medication to begin with and have suffered irreversible augmentation. As previously stated, WED/RLS is believed to involve problems with glutamate excitotoxicity and dopamine dysregulation, so it is most certainly a neurological disorder. Along with non-refreshing sleep and insomnia, RLS is commonly co-morbid with fibromyalgia, which I have been diagnosed with as well. I believe fibromyalgia is considered a neurological disease by many experts.

I have found by discussing WED/RLS with other gaslit sufferers that it’s misunderstood by doctors all around the globe. Shockingly, it is not even taught in medical school at all. I was having a hard time discussing it with a female GP I was seeing at the time, because she did not have prior knowledge of the treatment options, and she therefore agreed to refer me to neurology. She became so anxious about the idea of administering opioids that after all my efforts to explain things for her during six appointments, she referred me to a misogynistic male colleague. He pulled away from me in his chair with his arms crossed over his chest and looked scornfully at the pile of papers I had printed out for them about RLS. “It was something American” he complained. No it wasn’t, it was international research. He would not touch the article, and he would not check out the NICE guidelines and discuss the drug recommendations. He wrote misogynistic nonsense about me in the medical notes. He had been poring over Dr M’s disinformation about me and clearly had no understanding whatsoever about WED/RLS.

Since most of the time spent in clinic with Dr M was centred around my problems with sleep, it may be that the ‘symptoms’ he refers to are the symptoms of sleeplessness. But I’m merely guessing here as this is in no way clear from the way he talks about them, and so he really seems to sum up a lot of complicated health issues under one simple umbrella, and that’s just ‘symptoms’. The insomnia has long been a very traumatic health issue in my case, and I do not appreciate that someone like Dr M trivialises it in this way and makes me look like a pill popping fool who doesn’t understand better than to take ‘the simple route’. 

Back in Finland, people with severe insomnia are usually referred to psychiatrists because they are the ones who can prescribe the type of medications that are used in more difficult chronic cases. This is why I had to attend such appointments regularly since the onset of insomnia in 1999. I had no interest in discussing mental health issues with them. So the fact I attended psychiatric appointments does not automatically mean that I had severe psychiatric issues, or that I was just taking the simple route of pill popping. The bottom line is that you cannot live without sleep, and so for some of us with an underlying chronic disease, it becomes a matter of a daily battle for survival. The fact that I’m still alive attests to my efforts to live in spite of the hopelessness of my situation.

As for my ‘methods’ of managing my symptoms that Dr M criticised in his letters, well it’s really quite simple. What else is there than trying to get restorative sleep every night using whatever means possible, and keeping the body from falling apart? These problems go on and on and on and don’t take breaks. I face the same issues every 24 hours. I don’t know what Dr M means when he claims that my methods may be flawed. “The interpretation of her symptoms in a broader sense may be skewed and that her methodology for managing these may be flawed” were his literal words. Perhaps he’s referring to the fact that I take pills to sleep that he doesn’t think I need. It’s criminally unclear what methods he refers to and why he thinks these methods are flawed. To me actually said, and I quote from my notes, “You need therapy because you wouldn’t be here if your strategies were working for you.” That is one heck of an assumption and a very rude one at that! As I have said elsewhere, I was struggling with medication side effects and was interested to discuss the possibility that ADHD or rather ADD had affected my life so far.

On the other hand he simultaneously proposes that I should just carry on using the medicines that have been “formulated for me over time”. That’s basically admitting that I DO need those medications he seemed eager to get me off through psychological intervention. So which is it? Why, WHY write such hypothetical and contradictory nonsense that’s neither logical nor substantiated with evidence and examples? As usual, he’s just being deliberately abstruse because, presumably, he really doesn’t have a clue, and one can only assume that he just wants to be right whether or not my truth really is true or not. Perhaps he intended to fool other doctors into thinking that he had answers they don’t, and relied on their ignorance to impress them with psychobabble? In other words, he would seem to be the manipulator, not me. What I see in those letters is just counter transference and projection on his part, and I would suggest that they reveal a lot more about the state of his mind than it reveals about mine.

I already explained previously that I have tried everything in my might to cope without medication, but I could not sustain life that way. It’s interesting that Dr M did not applaud my efforts, but instead decided that I was ‘self-medicating’ in some sinister sort of way! Sleep is a complex neurobiological function, and you need a well functioning ANS to sleep well. People who sleep well think you just need to be sufficiently sleep deprived to sleep, but it is not that simple. In my case, it’s not even about ‘racing thoughts’, as I have none. Sleep deprivation generates more excitatory neurological activity (e.g. dopamine, adrenaline, glutamate) which can make the brain ‘wired but tired’ and unable to wind down within a reasonable time frame (I will get back to this further on). Just for the record: these are catecholemines, not thoughts or ‘moods’. I thought for a while that this could be linked to ADHD since I tend to get hyped up at night (not anxious, just wakeful and oddly energised). 

I also think there’s a hormonal link. Of course menopausal issues are also neurochemical, which makes Dr M’s remark about the absence of ‘genuine neurochemical problems’ even more ridiculous. Who spews out such fundamentally idiotic nonsense? Since Dr M believed that I should carry on using the same old medications I have used for decades, he did in fact demonstrate a complete failure to grasp that menopause and senescence cause neurological and hormonal changes in the body and that the medical regime needs to be adapted to those changes (the changes namely being lower oestrogen, but sometimes serotonin can also start to domineer). The investigation into my complaint was a travesty since it only involved a simple interview to confirm whether or not he had said what I suggested he had said, and of course he just denied it all. It might have been a little bit better had I had his letters to refer to when I made the complaint. Anyhow, the state of women’s health care is appallingly poor as it is without an uninformed male psychiatrist meddling with it, too. 

People usually use medication because they need it, not because they want it, and to accuse chronically ill people of taking the easy route instead of relying on CBT is discrimination. You wouldn’t suggest this to a person with a heart disease. In 2014, My GP did in fact refer me to the Royal Hospital for Integrated Medicine in London. Amongst other drugs, a sleep specialist sanctioned Zopiclone for me. I told Dr M about this, and he seemed to take it on board, so I don’t know what his mockery in regards to my sleep medication was really about. When investigated, he changed his mind and claimed to understand that this drug can be used therapeutically, but that was clearly another lie. I was further referred to a RLS expert and polysomnography because restless legs were suspected even then, but was regrettably unable to attend because of logistics (namely poverty). This has made things more complicated in the present. I don’t think such a referral to England could even be made anymore. 

WED/RLS is very hard to negotiate because it’s progressive, and the legs usually start feeling creepy with the urge to kick them just as one is on the verge of falling asleep. It wakes me up with tachycardia and a startle as an additional problem (probably from excess serotonin), and then I’m wide awake. I obviously can’t predict how much medication it will take to overcome the problems and get back to sleep so this can go on for hours. Even after two years on low dose opioids, I’m still trying to find the optimal way of managing the good and the bad that comes with this type of medicine. I also often wake up again after just two hours, often waking up every two hours, feeling wide awake with the inability to get back to sleep without additional medication. I still have to try and figure out if there is something I’m doing wrong when it comes to the medications, which also have to be taken at specific times due to the time it takes for them to take effect. If you call this ‘manipulating drugs’ then you’re a damn fool. But of course Dr M knew nothing whatsoever about the real nature of my challenges, so his presumptive remarks about ‘manipulating drugs’ are clearly not even about that. I would like to underline that he did not even report the correct prescriptions I was receiving at the time because he didn’t listen to me and didn’t check this against my medical notes. This is also medical negligence.

To paraphrase Dr M himself, I would suggest that his ‘rationale’ for trialling a psychotropic medication on me was ‘maybe flawed’ since I believe he should have expected that it would  induce insomnia as this is a typical side effect. Why would he do that unless he wanted a negative result? When I didn’t respond as he liked and complained about the insomnia, he was very quick to suggest that I was merely experiencing a nocebo effect. I’m on the verge of suggesting that the drug trial was part of a deliberate plan to ‘get to me’ but I just can’t seem to imagine that he would be clever enough to set up such a deviant trap! 

“When was the last time you went a week without thinking about your symptoms?” Dr M asked me in a confrontational, if not scornful, manner. This is a ridiculous and humiliating question to ask someone who suffers from chronic diseases. They are, after all, CHRONIC, so they do not typically take breaks. They have not just started and then gotten better, they really do deteriorate over time. Menopause is very well known to contribute to the deterioration of all these health issues, not least RLS and tinnitus. Many of my symptoms such as RLS and joint subluxations actually NEED to be monitored all the time, and I have to follow my daily exercise regime in order to manage my symptoms as well as is humanly possible. Of courses it’s a ‘preoccupation’ because besides the never ending issues such as the tormenting hyperacusis and tinnitus, I also have to face the same sleep issues every 24 hours! Chronic pain and fatigue are not problems you can take a vacation from when it pleases you. If you stop caring, you might as well lie down and die, and that is really how it feels to me every day of my life. Sleeplessness is a nightly torture I have to face at the end of the day whether I like it or not, and deafening tinnitus is something I just have to try and ignore the best I can throughout the day. It’s really not rocket science. I am sure most sick people don’t feel they have any other choice than to try and ignore their symptoms as much as possible. How else are they supposed to cope? How stupid do you need to be to require ‘expert’ advice about this? But of course, Dr M just wanted to have a go at me and fulfil his predetermined agenda, it’s obviously the only reason he accused me of being somehow unnatural in this regard. I’d be grateful for a real vacation, and really such a break should be funded as part of my treatment regime. But I don’t get vacations, either.

2.3 The misogyny

So Dr M thought that I somatised my anxiety and even lied that I had ‘admitted’ to it as if I was guilty of a crime. I do not know what this somatisation is supposed to look like according to him. As I have said before, the symptoms I struggle with are not mysterious, they are quite commonly found in cases of EDS and fibromyalgia and so on, and research is beginning to construct explanatory models for these problems. But apparently, like many other doctors, Dr M thought it’s possible for someone to hypnotise themselves to experiencing pain and fatigue, and that if people with chronic problems would just stop thinking about their symptoms, then and all would be well again. Of course this is not how it works in real life. I am quite prepared to suggest that Dr M’s point of view is that women should not have bodily autonomy because they will just ‘imagine things’. Only a man like himself can put women straight with that ‘medical advice’ as he called it in his letter. He complained that I refused to accept this from him along with psychological intervention of some kind, and I’m guessing he means some form of CBT. There is of course no evidence that CBT cures WED/RLS since this is not a psychogenic disease. Since I do not ‘somatise my anxiety’ as he claimed, there is no reason to indicate CBT either.

I tried to discuss some neurology with Dr M, but he was rude towards me and suggested that I should not take an interest in ‘biology’. In fact, he was blatantly scornful. Apparently he thought that an interest in the natural sciences is unnatural for a woman. Simultaneously, such an unhealthy ‘obsession’ would seem to indicate that the woman holds false beliefs about physical reality, more specifically, about the health of her own body. To him, there could be no other reason why I would take an interest in science and do my own research. These kinds of doctors are territorial: they feel that by taking an interest in her own health, the female patient is meddling with the doctor’s job and stepping on his territory - or pissing on the wrong side of the fence, as it were. They fail to understand that being in charge of your own body and to understand it as well as possible is the only way many of us will survive in a world where there is minimal medical help to be had for anything other than very basic problems. As a meme I came across stated, the more complicated your illness, the simpler your treatment plan. This is perhaps especially true in Wales, it seems. In short I do not believe this man understands how difficult it is to get any decent help for complicated health issues. The only hands on support I’ve been getting has been at RJAH in England. But of course, he didn’t believe my health issues were complicated, or that they even really existed at all.

Based on the fact that he didn’t seem well educated and seemed threatened by me, his scorn can only mean two things: on the one hand, he thinks women shouldn’t educate themselves about medicine and science in general, and on the other hand, they should not be allowed bodily autonomy. This is not an unusual attitude amongst domineering doctors who feel threatened by intelligent female patients. They will not accept a collaborative effort where both parties bring their respective experiences to the table. And yet, most of medicine relies on patient testimonies, so what would medical practice look like without it? 

In addition, Dr M said something vague about my lack of ‘detectable’ physical conditions, which is especially bizarre and invasive since in my case, hEDS manifests physically so that you can actually see it from the outside. First of all, I’d like to point out that I have every right to have invisible illnesses and he does not need to know about them all, and should certainly not pretend to understand them. As any real doctor would know, these problems could be any number of issues. But ironically, my illnesses are not all that invisible. Observations of my physical body are part of the process of diagnosis, and this is true in regard to EDS, fibromyalgia, insomnia, WED/RLS, osteoarthritis and spondylosisthesis and even burning tongue syndrome. Dr M didn’t acknowledge that by denying my bodily disfigurement, he was essentially making fun of me as a crippled person, and that’s gross discrimination. He could at the very least have noted that I do use a walking stick, but perhaps he thought I was just pandering to my ‘hypochondria’. Or maybe he didn’t notice because he didn’t want to see it?

I don’t know how Dr M thinks that EDS manifests itself in my life (or in anyone else’s, for that matter). If he really wanted to challenge the way I perceive of my condition, he should be well informed about the illness to begin with, but of course he clearly didn’t know anything at all. You can’t just offer some general therapy about undefined symptoms, and unfortunately I am pretty sure his therapy would have been based on that sort of drivel. I would like to add that having a kyphotic, reconstructed spine is extremely uncomfortable as you can never really stretch your back and be at ease, and if ever there was a physically painful and shameful trauma, it is this! You would have to be a psychopath to deny all the ways in which it affects my experience of embodiment, yet doctors dismiss it as ‘nothing’ and seem to think that only a neurotic person would be bothered by it. It’s just baffling. Apparently, if you’re not in a wheel chair, then you must be fine. It never occurs to people that sitting is as uncomfortable as standing and walking when you have this disorder. And all this was not something I was prepared to discuss with a doctor who was so obviously unsympathetic.

He also tried to coerce me into having therapy with him. The way he talked about it, with his creepy choice of words, might has well have been an indecent proposal. So yes, I mean it exactly like I say it and how it sounds, ‘to have x with y’. It was an intimate affair I did not wish to engage in, I smelled counter transference at a distance, and at any rate, CBT does not align with my world view. He clearly didn’t like it when I politely declined for the second time. More than anything, I had no wish to receive life advice from a fat, middle aged, ableist, patronising and rude male from Pakistan who also lacked any kind of track record, transparency and online presence. Firstly, he was a complete nobody, and secondly, I value myself too highly to have a rude prick like him meddle with my mind. I should have the right to choose who I open up to and feel safe in doing so, and these conditions were not met on this occasion.

All past psychological therapies have been of zero use to me, probably because there was no psychological problem to solve. My conditions are and remain genetic, they are physical, and there is nothing I can do about the fact that they progress and prevent me from leading a normal life. Whether or not I want help and what help it should at any rate be is up to me as a free adult, and it is not for a practitioner to force me into some therapy they believe in. You can’t typically turn genes off once they have started to express themselves epigenetically. To claim anything else is just nonsense. Yet Dr M suggested that I had ‘started out with an illness’ and then proceeded to ‘somatise’ when the illness was no longer present or that I was just exaggerating whatever was there to begin with, or whatever else this is supposed to mean, which is nothing but more jargon rooted in ignorance about the real nature of the illnesses that I have. My medical history should demonstrate that the conditions have progressed over time, but he did not take time to review it. That’s just sloppy.

I don’t need to be told that my coping strategies are rubbish, because they clearly are not. This kind of insinuation is also gaslighting. If my strategies really were poor, I would, quite simply, no longer be here to tell the story. ‘Oh but surely it can’t be that bad’, people might say, but that’s more gaslighting. Yes it really is that bad. I would be out there enjoying a fruitful career if this wasn’t the case, and anyone who bothers to listen to my story of past successes would agree that I tried really hard. I even had rehabilitation physiotherapy funded by the Finnish DWP by a top physiotherapist in Finland, but my condition did not magically improve because it’s relentless and chronic (it has to be managed day by day but it never improves). 

In hindsight, I should absolutely not have gone to this ‘ADHD clinic’ because it was interpreted as some kind of cry for help, which it wasn’t. I have had some serious challenges throughout my life such as a severe eating disorder, but I cured myself without anybody else’s help. I should be applauded for this feat, not made to feel that I’m weak for having had those challenges in the first place. It is a very archaic type of psychiatry that sees mental health issues as character flaws. I also do not need to hear that I am automatically sick in the head and generally delusional just because my mother had mental health problems. This is what Dr M curtly implied though he was not in a position to assume causation based on such a superficial and confused interview. 

There are many medical things one could commend me for, as I make positive life style choices, but such things never show up in these types of encounters. If I show signs of caring about my health, I must be deluded and obsessed. If I don’t follow ‘doctor’s orders’ (whether they really exist or not, or make sense or not), then I am just a lazy good for nothing. If I have my own ideas about coping strategies, then they ‘must’ be plain wrong (I guess female patients are just wrong, full stop). I was once told by a male GP that my insomnia was due to lifestyle issues even though I was slim, did not smoke, did not drink, and even practiced meditation. Did he know about any of this? No, he was not interested. It all came down to just one thing, it seemed, and it was the fact that I was a woman, and he, as a man, had to find something to blame me for. What else could it possibly have been? Another male doctor called my fibromyalgia a third world problem and asked me to take up volunteering and the marathon even though I had been deemed unfit for work and was already on permanent disability. They say that a lot of men really hate women. Dr M sounds exactly like those predecessors in his letters. Since he cannot blame me for all the usual addiction related problems people have, he says that I self-medicate on MAGNESIUM! Yes, a SUPPLEMENT..! Surely that’s scraping the bottom of the barrel..!?

Rather than finding out the truth, people like Dr M prefer to make uninformed, hasty assumptions and jump to conclusions without a conscientious analysis. They liberally exercise what they call their ‘professional opinion’ to find something to shame their patient for rather than admit that the case is too difficult and complex for their level of expertise. They rather lie about their understanding of the human body and mind and make up a story about anxiety that’s vague and ambiguous enough to seem adequate to the untrained eye. People hear what they want to hear.

During the investigation following my complaint, Dr M claimed that he had shouted at me because I was deaf. This just goes to show how little he understood and cared about what’s really going on with my health. I am not deaf, I have hyperacusis, which is basically the opposite!

It was also crystal clear that there was an unbridgeable cultural gap between myself and this dreadful prat of a man. Not only was he unable to respect me as an educated, older woman with life experience, but neither could he understand the complexities of my cultural background and upbringing as a fairly gender neutral person in one of the most gender equal countries in the world. To him it was simple: my mum had been an alcoholic, and as a result of ‘neglect’, I now spent my entire life manically imagining diseases and trying to get the attention of all those ‘dashing’ male doctors out there. And that was that. The narrative is not even his invention, but just a regurgitated explanatory model that has been repeated to women like me a million times before. He insisted that what I called stress, was really anxiety, so from his perspective, it was in the ‘head’ rather than the body (the nervous system is not this simple, of course, since it also occupies the head). As I pointed out before, he did not bother to specify which type of anxiety this would be (e.g. GAD, social anxiety, etc - there are many kinds). 

In the EDS community, we tend to ‘boom and bust’, and we call the dysautonomic adrenaline rushes that leave us flat out exhausted being ‘wired but tired’. EDS specialists are nowadays aware that the dysautonomia often presents with ANS activity that looks like anxiety on the surface, but in reality, is not psychogenic. We are typically subject to the gross psychologisation of physiological distress that can often be extremely severe. The symptoms are therefore routinely misdiagnosed as a mental disease. This is so common that the EDS society’s brochure mentions it (a brochure that I sent the staff at the health board, but they ignored). Co-morbid mental health problems commonly arise as a result of the physiological symptoms of pain and fatigue and not the other way around: all the many limitations the disease puts on the sufferer cause much rumination, as well. These limitations range from a simple movement of the body to the ability to work and socialise, but there are also psychological limitations because other people who take a functioning body for granted don’t understand the difficulties and often communicate their disbelief and scorn. Either way, potential co-morbid problems with genuine anxiety and other psychological problems are too complex to be dealt with in a hurry. Dr M definitely wanted to get through the assessment as fast as humanly possible and almost kicked me out when he didn’t think we were getting where HE wanted to go. He had no interest in anything but having me go through his CBT - presumably to try and treat ‘somatisation’, but even this remains unclear. The chronic exhaustion that often comes with EDS and fibromyalgia resembles ME and Long Covid, and these are also typically psychologised. I tried to explain to Dr M that I suffer from chronic fatigue, but he cut me off by snapping at me to stick with diagnosed conditions, and didn’t allow me to elaborate any further on anything at all. His rudeness caused my brain to freeze up so I ended up not saying anything else in my defence. There was no opportunity for me to get a say in.

I did not know that he had written a grand total of four (4!) obsessive letters, as shockingly, copies were not sent to me, and they did not reach my GP immediately because he had made some mistake. How can such patronising contempt for the patient be allowed? Also, rather than spend time talking to me in clinic, he spent time writing silly letters. I ended up having to chase them and only found months later that he had indeed written these four hostile letters about me that were packed with lies and inaccuracies, and that included a diagnosis, and none of it made any sense whatsoever. Personally I do not for a moment believe in the ‘somatisation’ theory. In my opinion it is typically imposed on women as a way of gaslighting genuine pain and fatigue. I take it that people are familiar with the discrimination of women’s pain and fatigue in clinical settings? If not, they should look it up as a matter of some urgency, because it’s a massive crisis. But of course, that was not all there was to Dr M’s garbled letters.

2.4 The shaming

Dr M did not allow me to explain the complexities and nuances of my life that I had hinted at in my unfortunate introductory letter because he was only looking with a searchlight for signs of something that, in his mind, would allow him to pin me down as a hypochondriac.

As a free person, I’m allowed to have my own thoughts about my own body and I cannot accept that a dictatorial medical practitioner is unable to tolerate it. Dr M was so impressed by that part of my story that he had to copy and paste it into HIS letter as such, which makes no sense whatsoever unless he believed that I was trying to assert medical expertise at the tender age of 18, which obliviously I didn’t as we did not even have google back then. My unfortunate choice of words have then been repeated by others who also wanted something to accuse me of, some proof that I’m unhinged (so these insinuations that I’m wrong in the head are not benevolent). I’m not even a native English speaker, for heaven’s sake, so sometimes I just don’t use the right words and expressions, especially when my brain is foggy and I press ‘send’ too early. I also tend to speak in a frank way because I’m Finnish but Finnish people are typically well educated so I don’t expect to be misunderstood that easily. I was very nervous about my choice of words in hindsight, and I was right to be: I certainly had to suffer for it. I’m not a passive pill popper or an imbecile, I take the initiative to try and improve my life situation, but I only get shit for it by overbearing and intimidating types like Dr M who don’t like independent women. It’s pretty clear from his words about ‘my research into the conditions I believe I have’ that he intended to make me look like a criminal of sorts. But the only criminal is he because he is no stranger to lying in order to find ways of discriminating and humiliating me. As expected, his defence is also a long list of lies.

So, this alleged psychiatrist’s creepy mannerism and evident lack of psychological insight made me feel very nervous all around. He was an unpleasant foreign man with a difficult accent. There was a sudden sense of urgency about him, which I have noted in many practitioners who treat patients robotically. I believe it’s designed to make the patient feel too overwhelmed to question the practitioner’s opinions (and opinions really are only opinions, by the way, not evidenced facts). Some of it is perhaps cultural mannerism, indigenous to more southern countries. In addition, these doctors cut the patient short every time they try and elaborate on their issues so nothing ever gets said in an in depth sort of way. I call it ‘the house is on fire’ syndrome. It always feels like a means of manipulation and I do not believe I’m wrong about this. This time, I also felt very strongly that there was sexism, and possibly also reverse racism, at play, and my instinct was to NOT go back for another appointment. There was no investigation into ADHD at all anyway, although I was supposedly at an ‘ADHD clinic’. I expected the consultant to be knowledgable about ADHD, but he clearly was not because he did not grasp all my references to ADHD in my letter. I had been asked to fill in a questionnaire that must have been binned straight away, and there was no further investigation.

The interview with Dr M was bizarre and disingenuous, mostly consisting of a few disjointed tick box questions and provocative statements that felt entirely out of place in a Northern cultural environment. He started out with a longwinded story about some schizophrenic person’s journey through the health system. Oh, and he was ‘quite brilliant’, by the way, Dr M added, with eyes glazed over because he was just parroting an old story he probably told all his patients. I was at this clinic because I’m attention deficit, remember, so I could not focus nor hear him well, but he didn’t give a hoot about whether I could follow or not. I have no idea what the long story was about - it had something to do with a poor psychotic patient’s futile search for answers. It seemed didactic with the aim of putting me off asking questions and looking for answers to my health problems. In view of this introduction, it would seem that he had decided within minutes when I walked through the door that I was just a hypochondriac. In fact, he may well have decided on this idea already when he read my letter of introduction, and had no intention of going back on this theory.

Let me tell you, on the face of it, I was not happy to be compared with somebody with schizophrenia, but more than anything, his insinuations were derogatory towards both me and anyone with this very serious and genuine mental disease. In other words, just by pulling this tired old story, he was medically shaming anyone who set foot in the mental health clinic, for whatever reason. When the investigator questioned Dr M about it, he could not explain his reasoning other than that he thought the story ‘was usually helpful’. Oh really. How he can even judge whether his patients find it useful, is beyond me.

Instead of inquiring about my thoughts regarding ADHD, Dr M woke up from his state of half-slumber and startled me by becoming animated all of a sudden. He started to pry into the sleeping pills I have to use in order to get some kind of refreshing sleep. He rolled his eyes aggressively in total disbelief that other doctors REALLY allow me to take sleep medication. So I was pill shamed, in other words. He did NOT attempt to discuss the restless legs syndrome (WED/RLS), which I had mentioned to him, and that an experienced clinician would have taken into account in their interview. I even wrote him a short letter before the last appointment asking what we were going to do about the Willis-Ekbom Disease, but he just kept ignoring it, and treated me like something the cat brought in. WED/RLS can, after all, mimic ADHD, and he should have known this. His sudden attack on my drug regime was a kind of third degree and extremely triggering to me since I have often been bullied and gaslit by doctors because of my very genuine need for sleep medication. Doctors do not understand the complexities of sleep, and they do not admit that insomnia is commonly co-morbid with chronic illnesses, and that it doesn’t necessarily have anything to do with sleep hygiene or dependency on pills. Instead, they just pretend to understand how all this works, which is akin to medical negligence. Sleep is an extremely complex neurobiological event, of course it can go wrong. Why is this so hard to believe?

Dr M made really weird presumptive statements such as “Why are you taking these medications when they don’t work” - yes they DO work, and it’s a very ignorant thing to suggest that I was there because they ‘didn’t work’ and points to a very black and white and prejudiced world view. The reality is complex and my medication regime desperately needed adjustments and fine tuning. He also said, “I don’t know you when you’re on this medication”. Well, he didn’t know me, full stop! I really resented the implied intimacy and omniscience in these statements, along with the overbearing and frequent use of the word ‘when’. That kind of talk is provocative and disrespectful, and has no place in a psychiatric setting. It’s abusive. In my introductory letter, I had said something about often feeling threatened, and then he proceeded to threaten and intimidate me! It’s not difficult to see that this is reverse psychology and the abuse of a person in a vulnerable position.

I thus felt attacked and put on the spot during this interview, and it made me really nervous. Meanwhile, Dr M noted that I seemed anxious and ‘perturbed’, and decided that I was demonstrating ‘enduring anxiety’, whatever that is. Apparently he decided without further evidence that no doctor believes me because there is, quite simply, nothing to believe! It was hardly surprising, the way he gloated at my medical regime. Of course from his simplistic point of view, doctors are always right, no matter what the issue is, and that’s that. It’s ironic, because in in his letters he twisted everything anyone has ever said about me to a point where only HE looks like the expert, and everyone else (i.e. the doctors that have diagnosed me) seem like incompetent idiots whose thinking must have been flawed if they really believed I had some illnesses!

Unfortunately I ignored my gruelling gut feeling about this practitioner, and went back for another appointment. The reason for my decision was that I had issues with my medication since one of the nocturnal drugs to help with my insomnia was aggravating RLS, and this medication was initially prescribed by a psychiatrist in Finland. But we didn’t discuss this at all because, as I have said before, he routinely cut me short whenever I tried to explain myself. He suggested an alternative drug that I would not get through my GP, and though he seemed to think it was an equivalent medication, it really was the opposite. It was a partial dopamine agonist, and stimulating rather than calming. To Dr M, sedatives seemed to carry negative moral undertones or something along those lines. Why else would he oppose them? In his letters, he’s adamant that I shouldn’t take sedative medications! How else am I going to sleep I ask?? But in this context it’s important to note that I had heard about the drug he suggested in relation to chronic fatigue and thought it was worth a try, for reasons that I can’t go into here. However, when I returned to report the devastating effect the new medication had had on me, he simply refused to believe me. Why? Because his agenda was to make me fit the description of a ‘somatising’ individual. 

The side effect of the above drug was not an effect I’ve ever experienced before as there was a sort of ‘speeding’ (from the activation of dopamine receptors no doubt). It also gave my insomnia a real ride. Because I could not understand what EM was mumbling in regards to my reaction, he proceeded to write ‘nocebo’ on a piece of paper (in a pad he hadn’t written many, if any, notes on). I was in shock, and of course I denied that the side effects weren’t real, or that I had somehow psyched myself into having them, for that matter. It was the most ludicrous suggestion I’d ever heard. And this was not the first time dopamine agonists had made me sick, either. ‘Nocebo’ (the opposite of placebo) didn’t even make sense in this context since I genuinely wanted for the medication to work: how could I possibly have ‘created’ an opposite reaction through hopefulness? I mean, seriously!

Apparently I have had nothing better to do with my life than to sit and induce physiological symptoms day in and day out through some form of self-hypnosis! Hypnosis is not exactly a scientific method anyway, so the idea that you could so easily hypnotise yourself into certain states stands on very loose ground. I think he was implying that my unconscious is creating this scenario for me while I just passively accept it because I’m too stupid and unaware to see what’s going on. How strange that would look in real life! At any rate, I want to underline that I am genuinely unwell and can demonstrate it, too. I am sure that most people consider me extremely self-aware, but this idea was not acceptable to EM. He had to stamp on it.

In reality, I’m a multitalented and successful person who had everything going for me before I became too ill from hEDS and fibromyalgia. Note that EDS symptoms typically start manifesting in puberty, which is when my fatigue, back pain and other troubles started, and so it is not about some ‘teenage angst’. I would certainly prefer my many varied career choices to the current state of affairs! The greatest irony of all is that I’m something of an expert on consciousness and doubtlessly know a great deal more about it than he could even dream about. Blaming the unconscious for creating the symptoms outside of one’s consciousness is a cop out if you ask me. But the main point is that there is plenty of evidence about the devastating consequences of hEDS and WED/RLS alone, and anyone who deals with a patient with this diagnosis should be obliged to look up that information, PROPERLY.

It’s interesting to note that the great tragedies I have experienced in the past ten years were not even touched upon in clinic. Dr M mentions the recent deaths of my husband and my mother in his letter because he copied it from mine, but there is not a single word of sympathy or concern for my well being in the wake of such challenges. Most people would be expected to be quite distressed by the things I have experienced (and there have been many other challenges besides medical ones). Most therapists would show a little bit of polite interest at the very least.

2.5 The unflinching arrogance

It’s clear that this practitioner (whether he himself was conscious of it or not) was on a war path to break me, assassinate my character, spread disinformation about me, and try and prevent me from accessing health care in my old age. And no, I don’t have persecution anxiety because I am a perfectly normal individual with normal non-conspiratorial belief systems, but I do NOT put up with patronising people and injustice. As a matter of fact, I have already suffered from the consequences of his statements. He actually suggested that I don’t have any of the conditions I think I have and that my symptoms don’t match any ‘detectable’ diseases (as I have said before, I do not know what a detectable illness is, anyway). She may have some issues, he declared, but nothing on the scale that she believes. Unbelievably, he pretended to be an expert on all my diseases. The important thing to notice is that he did not clarify which symptoms he was talking about, nor did he have the medical competence to judge the medical health problems that have been diagnosed by specialists! He picked on something I allegedly said about incompetent doctors. Yet ironically, my medical history clearly demonstrates that I have every reason to be on my guard against incompetent doctors. For example, I was almost killed in 2019 due to medical negligence and won a substantial award in settlement money for the physical and lasting harm they caused me. That in itself should be quite enough to put anyone on guard, but regrettably, it’s not a solitary occurrence.

Why, then, in the last instance, and if he didn’t even believe I had a ‘genuine neurochemical disorder’ (as he called it), or that the medication works, did Dr M suggest that I just continue taking the same old medications? What is a non-genuine neurological disorder anyway, I ask? Connective tissue disorders such as EDS are most definitely neurological. Collagen is a neurological component and present everywhere in the body. As I have said earlier, they are therefore typically connected to different forms of dysautonomia (ANS dysfunctions) and GI distress, as well as concerns on the level of the brain (ADHD and ASD are indeed common amongst EDS patients). There is hardly any doubt that hyperacusis is also a neurological condition (tinnitus often accompanies EDS anyway). RLS is most definitely a neurological disease, and it’s often co-morbid with fibromyalgia. In addition, I have deeper problems with serotonin and dopamine agonists that suggest a rather serious issue with the metabolism of serotonin. I brought some research for the doctor about serotonin syndrome (toxicity) but he seemed perturbed and refused to look at it. I guess he didn’t know what this is to begin with. He probably also thought I was just trying to convince him about my ‘imaginary’ conditions when he had already decided that I was deluded about them, and he was not going to go back on his assumption, because he needed to be right. Oh dear. 

Lastly, any potential psychiatric symptoms have a neurological side to them, and if Dr M doesn’t believe that, then he’s a quack and belongs in a religious cult. That sort of talk about mental health as something apart from the brain is very old fashioned. For instance, recent research shows that some forms of genuine anxiety may be related to glutamate/GABA imbalances, while social anxiety actually depends on serotonin excess. WED/RLS are also believed to be connected to glutamate excitotoxicity and problems with dopamine regulation, and so on. So labelling me as anxious but failing to root it in ‘genuine neurological disorders’ and problems of a physical nature in general, is just humbug. It demonstrates a total and archaic belief in a mind-body dichotomy.

If Dr M’s reasoning sounds like confused garble, that’s because it IS. It’s called strategic ambiguity and the aim is to confuse the audience to think they are reading something meaningful that resonates with their biases (it feeds their confirmation bias). Yet I am now the one who has to try and explain his garble to other people who think it is I who am crazy and confused! Excuse my French but it was a complete mind fuck. There was certainly no Hippocratic oath at the back of it. This was an intentionally harmful practice. This practitioner went through where the bar was the lowest, and hit me below the belt with simplistic theories of causation, along with a bizarre form of accusation that was designed to make me feel unworthy of breathing the same air as him. He wanted to put me in my place, and you can most certainly hear it in the way he talks about me in his letters. Does anyone really think it’s okay that I should be made to understand that there is no point in complaining about this treatment because no one will hear me out, no one will read my evidence, and no one will believe me? Yet that’s exactly how things have transpired.

The practitioner attempted to overturn all the official diagnoses that I DO indeed have, and in the process, he stepped on all the other doctors’ toes. I can tell you that my GP was very unimpressed. It would seem that Dr M believed himself to be a clairvoyant medical intuitive with x-ray eyes and remote viewing capabilities. He certainly acted like a sectarian guru of sorts. At no point did I undress to demonstrate my physiological ‘detectable’ health problems and discuss them with him, as one would expect during a professional health investigation into hEDS. The latter is a complex investigation, and it has already been done at RJAH. We all follow the same rules when we drive on the public roads, don’t we? Yet people like Dr M make up their own ‘traffic rules’ and then psyche everyone up to believe that their way of navigating the system is perfectly permissible. Again it reminds me of religious leaders who proselytize people into believing that their way is sanctioned from above.

I confronted Dr M directly about his apparent lack of understanding about neurology since I quickly found out that he didn’t even know the basic fact that melatonin is synthesised from serotonin. Melatonin, on the other hand, triggers WED/RLS. It’s common knowledge. I was under the impression that psychiatry involved some education about neurology. In response, he shouted at me that he didn’t need to know about neurology because he was in fact a psychiatrist! In other words, he knew nothing whatsoever about the psychoactive drugs he was dishing out, and it terrified me. We should have discussed the side effects that were troubling me, but he plainly refused to do so. I can only assume it was due to incompetence. He dithered something about me having said that I don’t tolerate noradrenergic drugs, which I never said. He then wrote in his letter that he could not give me the dopamine agonists I was asking for, while in reality, I never asked for any such medication. He just made things up as he was going along, but then also made up that I was the one making things up. It’s mind games, and everyone seems to think it’s okay!

At the last visit, I genuinely thought we were going to discuss my current medication regime and  the future. Yet he has written that I “wanted to discuss the diagnosis”. How could I want that, when I had no idea there even was a diagnosis, because he had refused to tell me about it! Instead, I found myself at the receiving end of his vindictive outburst about hypochondriacs (‘Hypochondriacs often start out with a real illness’, he said). What does something like that even mean? I didn’t have cancer it got better, or something like that. I have life long chronic diseases that cause increasing degeneration of the body over time. Anyone who cares to read his letters with some mindfulness can see how hostile he sounds. I have evidence - but no one cares. Why is that?

By saying that I was asking for drugs that he ‘could not give’, Dr M implied that I was drug seeking. It’s obvious he squeezed this type of argument into his report to make the diagnosis pass as a ‘somatoform’ disorder, but none of it is true. During the investigation, he denied having suggested that I was a drug seeker, but it’s nevertheless implied in the letters. If he had said the truth which is that I did NOT ask for anything, then the argument about my allegedly overactive imagination would look a lot weaker. Of course.

It’s really not that uncommon for people with EDS to be extremely sensitive to medication, or to have unusual reactions to them. For instance anaesthetics is a common problem. In my case, even tiny amounts of certain drugs affect me strongly in a negative way. This can not be taken as proof of somatisation. I know the DSM thinks it is, but it’s ridiculous in view of very real chronic health conditions and ageing. The authors of the DSM are not medical specialists, and it’s awful that they get to have opinions on endocrine and metabolic issues that are easily interpreted in whatever way the psychiatrist likes. It should also be quite well known by now that menopause itself can cause an increase in this kind of sensitivity. Did we discuss menopause? No. Did Dr M know anything about menopause? Probably not any more than he knew about hEDS, WED/RLS, hyperacusis, vulvodynia and fibromyalgia, or anything else for that matter. Dr M simply decided to refuse to believe me when I listed the side effects I had experienced. Just like that. 

In addition to all the above, Dr M accused me of doctor shopping! This is not even remotely true, and completely pulled out of a hat. I had not seen a consultant since 2019 when the gynaecologist cut off my ureter and it was later reinserted, and some of my toes were fused the same year. Throughout Covid, I was shielding, but of course he would have accused me of health anxiety if I had told him that. In short, he knew nothing of the appointments I’ve had in the past few years. So in other words, he believed that the visit to his clinic and ONE upcoming visit to neurology served as sufficient evidence of a hysterical need to have my so-called imaginary conditions validated. Clearly he was quite desperate to make me look like I really fitted the somatisation diagnosis, but it is all smoke and mirrors.

Dr M struck me as an impostor, or at the very least a grossly under qualified practitioner. I have never met a medical practitioner who thought that badly of me, to a point where I felt that he actually despised me. My feeling was the complete opposite to the safety you should feel in a clinical setting for mental health. It wasn’t just a slip of his tongue that terrified me, it was everything about his simplistic conclusions, his unpleasant mannerisms, his lies and his disrespectful way with words. 

Shockingly, there isn’t even a trace of Dr M on the internet, in fact there is nothing whatsoever anywhere to suggest that he has a valid education and a distinguished career path. I have no idea where he trained, if at all, since no one agreed to give me his credentials when I asked for them. I did not even get his license number when I asked for it. My inability to choose a suitable practitioner is unacceptable, but the fact I was not allowed to know what kind of doctor had just tried to make me feel suicidal is not acceptable either. He actually asked me at the time if I was suicidal and I said I was not, and maybe because of it, he wanted to push me over the edge? It certainly seems that way. How is all this even possible? I wanted to know who the person is who has intervened with my life in such a deep and troubling way! Yet they said his data was protected - while mine was not. My confidential letter to him was published for all other health practitioners to see, and this is not right. Let me also reiterate that copies of his letters were exchanged above my head as though I was a minor and incapable of adult thought and behaviour. This is not acceptable at all!

2.6 My many complaints

I actually looked into some talking therapy, just to have someone to discuss this particular experience with. But I did not feel at all confident about the way the NHS wanted to go about it. First they sent me to someone local whom I know vaguely. Then they suggested people there was no information about online. Apparently they have no directory of the counsellors they employ. I felt unsafe and discouraged, and not confident that complaining about the unpleasant  psychiatrist was permissible. Even then, they wouldn’t actually DO anything about it, so what was the point of talking? I was also beginning to realise that I can no longer engage in such sensitive conversations because of my hearing impairment. So that was the end of it. I will no longer open up to random strangers in the name of ‘therapy’. I was never interested to begin with because my world view is very different from that of the average Joe and I don’t believe in mainstream psychology, but I’ve tried to go along with society’s expectations on how I’m ‘supposed’ to deal with health challenges. Yet none of it has been productive.

I made a complaint about EM, but the investigator was another male psychiatrist, this time a consultant from a major hospital in Wales who would was also seem to be from a South Asian background. This was quite unacceptable within this context as he there is the suspicion that he would not necessarily maintain professional and cultural neutrality and a distance to someone that is presumably from his own background. I’m under the impression that he is a coordinator and recruiter, and wonder what his bias is in regard to Dr M since he did not appear to take my complaint seriously at all. The referral of the investigation to him was entirely insensitive towards my original complaint - it should have been obvious that a very different kind of person was required for this investigation, someone with an objective point of view. Because of the muddy nature of my experience and since I did not have the letters to refer to, it was very difficult to formulate a complaint, so maybe the level of my distress was not apparent. His response was disinterested, unsympathetic and probably biased, and apparently he only conducted a brief interview over the telephone with Dr M. I refused to be humiliated even further by going to talk to him (which at any rate was impossible from a practical point of view as the hospital is very far away, and I have also finally understood that I can no longer engage in oral communication about sensitive matters). And at any rate, I did not feel safe, since I did not know if more bizarre diagnoses would come flying my way if I popped up my head, or whether I would simply be shut down again.

The investigator only concluded that Dr M demonstrated a failure to differentiate between somatisation and hypochondria, as they are in fact different conditions, but apparently Dr M was not even slapped on the wrist for it. When asked about the story about a schizophrenic, Dr M declared that he does not believe in labels! Well I say, he certainly seemed to believe in the label ‘somatiser of anxiety’, ‘hypochondriac’, ‘self-medicating’ idiot and ‘manipulator’. It makes me laugh how transparent he is. As I said earlier, he also thought that the story usually seems to help. I have no idea what that’s supposed to mean. If anything, he labelled me with a dreadful label when he felt compelled to diagnose me. It was not necessary to diagnose me at all.

When you make a claim, you don’t just expect the practitioner in question to deny your accusations. Denial doesn’t prove anything whatsoever, and the system is supposed to offer you a fair solution. You expect them to explain what they really thought. So instead of just saying that he did not suggest I was stupid, he should have explained what he really thought I was. To me, stupid equals ‘hypochondriac’. I would have liked to know what he thought of me in order to arrive at the conclusion that I’m a hypochondriac, especially when he didn’t seem to know the difference between hypochondriasis and somatoform disorder, and even admitted it to the investigator. I concluded that psychiatrists think they are god’s gift to humanity and that whatever opinion they have is a law that cannot be questioned by anyone. This is how they confirming that they really do take everyone for a fool.

The investigator claimed that Dr M’s colleagues had all ‘agreed’ about my diagnosis even though they had never even met me, and based on Dr M’s disjointed and simplistic way of communicating, I doubt any of them could possibly have understood the case from the complex point of view I believe I deserve as a many faceted human being. Apparently all of them have clairvoyant abilities! The reference to all those colleagues with their alleged ‘expert point of view’ was banal, but also an intimidation, and I’m sure he knew what he was doing: I wouldn’t be returning to that mental health facility in a hurry.

I’m under no illusion that my ‘case’ was treated in an entirely generic fashion. It’s obvious that medical negligence on the NHS is rarely admitted to, and psychological injury does not even seem to exist within this frame of reference. On the other hand, the mental health practitioners were obviously ganging up against me through a united front of nonsense, evidently not because they are eager to learn something new about the human mind but because that gives them self satisfaction through the power of the majority. Is it far fetched to assume that they want to shut down the non-compliant patient? Their practice is completely unregulated and uncontrolled, and obviously they want to keep it that way. This has been demonstrated to me by a disastrously poor complaints process and the fact there is not even a PALS where I live. I was effectively stuck in a room with an abuser who could do and say whatever he wanted to me, and no one would ever believe the testimony of the supposedly ‘crazy’ patient. And I guess this suits these people just fine. We all know this is how it has been for centuries, and the power games have not changed much over time. But the misogynistic mob that tried to impress me with their numbers, looks entirely petty and pathetic with their readiness to label a patient as a deluded self-hypnotiser instead of taking a genuine interest in the case. They were all medically biased and voluntary slaves to the conveyer belt of the NHS and the bible of mainstream, male dominated psychiatry, the DSM (or its European equivalent). In short, they were utterly uninterested in the real person behind their presumptuous and shallow verdict and apparently convinced that chronic illnesses are generally psychosomatic. Again, I want to underline that no one actually checked on my medical history before they decided to slay me.

Unfortunately I didn’t have the doctor’s letters at hand at this point because they had not been shared with me and were nowhere to be found. I then contacted an ombudsman, who failed to understand what my problem was. Since there was no recording of the interviews, she said, there was no proof of the abuse, and so my testimony counted for nothing (for this reason I will start recording major appointments). She seemed annoyed with me, and the lack of logic in the doctor’s letters was evidently unimportant to her. I’m assuming that no one wishes to challenge psychiatric jargon (unless, like me, you have a background in psychology). She argued that Dr M had apologised and that I should be content with that, but I did not see how his feeble ‘apologies’ could make up for the poverty of his investigation. He had basically only said he was sorry he made me feel stupid. He did not apologise for misdiagnosing me because neither him nor the investigator was interested in the history of real health problems that I have. From now on, I will record any intimate discussion I have within the framework of the NHS!

My impression when dealing with other health professionals was that the psychiatrist was seen as something of a god, or a priest, at least, and he knew it, too, because he most definitely knew he could get away with just about anything if he made his arguments convoluted enough. The IOC wanted nothing to do with me. I contacted the GMC who was very evasive and refused to share the consultant’s reference number, since it wasn’t in the online register. I have a right to see it, yet no one gave it to me. I repeated that Dr M had claimed that he doesn’t know neurology, and the person from GMC assured me that it would be good practice for a psychiatrist to admit to not knowing neurology. The problem is that Dr M had changed his mind (lied) during the investigation and claimed that he DOES know neurology. This is how messy and untrustworthy the communication was with every officer I contacted. No one made any effort to understand what my problem was. I had to chase them. They were evasive and failed to respond, and clearly just wanted me to go away. I was stone walled!

I contacted an equality advisor, who was also evasive and only concluded that ‘there may have been discrimination’. Perhaps, and whatever, in other words. I contacted the only two lawyers I could find who would deal with psychiatric complaints, but they refused to understand what I was asking for. They assumed I was complaining about a misdiagnosis of deafness, and rejected my complaint. I contacted Bronllys hospital department that deals with misdiagnoses, and begged them to remove the letters and the nonsense diagnosis, but they refused and ‘played dumb’. The doctor had ‘made some observations’, and that was that, they said. The fact that I emailed them seemed to prove to them that I really was deaf as well, so now they were also concurring with Dr M that I’m definitely deaf, and also made it sound like a character flaw rather than a serious disability (but I reiterate, that hearing loss is not a disability that I have!).

I do not believe that anyone has even bothered to read all four letters through, let alone with some deeper thought. All these shifty individuals who have failed to take me seriously and investigate the matter are enablers, accomplices. The bottom line is: no one cares about people who have the mental illness label stuck to their forehead. And yet it should be fairly obvious that a person with a ‘somatoform disorder’ (if this diagnosis was even real) would be a weak minded person. The reasoning being, that a neglected child develops some neuroticism, and subsequently becomes obsessed with bodily symptoms and dramatises them because of anxiety, but isn’t aware of creating their own illness. As a child, I was not anything like this caricature, on the contrary, I had sturdy health until I succumbed to the progression of hEDS at the start of puberty (just like so many others, as this is how the disorder often unfolds). I am clearly a resilient person who has survived numerous catastrophes and is capable of analysing them acutely. But most importantly, I am not a child, I am an adult who is educated and self aware, and should  receive respect for the wisdom I have acquired throughout my life. What gaslighting I felt I had to put up with in my 30s, I no longer feel I should put up with.

Following the unfortunate and suspiciously late appearance of Dr M’s letters, certain misogynistic male doctors have since cherry picked some of the ‘juicy’ bits in them in order to try and get to me and prove that I have a propensity for health anxiety. According to the DSM, health anxiety is a diagnosis that you can only have if you really don’t have any illness at all, but doctors don’t understand this, so they throw these words around like candy. This happened for instance in conjunction with the law suit against medical negligence I filed in 2019 and won in 2023. They lied about my character and mental disposition, and shoved Dr M’s words in my face in order to make me look crazy. They went to great pains to prove that tinnitus is linked to psychiatric problems, which is ludicrous, since some level of tinnitus is such a common problem for older people. As a Finnish person, I’ve been appalled and dismayed at the frequency at which British people seem to think it’s perfectly normal and permissible to be untruthful. The lies pop up constantly, and everywhere. I’m not used to this kind of mentality, it shocks me to no end.

2.7 More confused nonsense

I do not have a major mental health disorder, and certainly not a personality disorder. I have a psychiatric document in English by a doctor in Finland from 2009 that states that there is (as you would expect) some depression and anxiety, but also that I suffer from insomnia. I also have other records that I have quite successfully translated on Google, and one of them is by a neuropsychologist who describes me as being a ‘Highly Sensitive Person’. The former letter instructed my GP about all the many drugs that had already been tried, and my (then) current medical regime, and it wasn’t a big deal. But everyone else chooses to ignore the letter altogether. While Dr M did not conduct a thorough mental health investigation, he did say to me that he didn’t think I had a personality disorder. Yet in the letters he says something different: now it’s ‘unclear’ whether I have a personality disorder or not. He uses the word MAYBE. This is already a dreadfully sloppy attempt at pinning me down with some delusional disorder that he does not even explain adequately. Later on, the witness expert I used for my law suit picked this out of Dr M’s letter and claimed that I ‘do’ in fact have a personality disorder: the misquoted passage in Dr M’s letter served his confirmation bias, and so that’s what he thought he saw (he also said he saw a long history of bronchitis, which I have not had).

But what was especially disturbing was how vastly the witness expert exaggerated the research about an alleged link between tinnitus and mental health, and pulled me into his witch hunt by stating over and over how ‘clear’ it was that I have ‘a long history of psychiatric problems’: he makes it sound like I’m basically an off the wall nutter. All this despite the fact that I was paying him out of my own pocket! Although he had pledged to tell the truth in front of the law, he effectively lied about me, so it was perjury, but at that stage, there was nothing I could do as I could no longer confront them (my lawyer advised me to accept the offer or compensation, and I agreed as the process needed to end). Just like Dr M, he also failed to understand that some of the things I had said in my CONFIDENTIAL letter were not to be taken LITERALLY, and the way he quoted my letter looked even worse for being so utterly devoid of psychological insight and communication skills. For instance, I had said I hallucinated about dying when I was medically neglected in 2019 but I didn’t mean ‘hallucination’ as in psychosis, just a strong, exaggerated feeling that I was simply trying to describe. The psychotropic medication he said I was on was for insomnia, and it was extremely low doses, so it was not for mental illness as he thought. And so on. It was bizarre. Since I received financial compensation anyway, the psychiatric issues that were thrown in my face along with the offer seemed to serve no other purpose than a punitive character assassination. Perhaps the sum would have matched my lawyer’s demands if this had not come in the way.

The above also demonstrates how facts become thwarted within the health care system: rumours and misunderstandings spread like wild fire when confirmation bias makes doctors see only what they want to see. But even worse than that is the way a serious diagnostic label is lightheartedly tossed around like candy with the obvious intent of stigmatising the patient (by spreading disinformation and ‘fake news’, in other words). One male GP who also referred to the letters with some rather snide remark behind my back, refused to treat my refractory RLS while also claiming that my ‘symptoms’ (not sure which) would never improve because I refused CBT. Meanwhile, chronic conditions are obviously not cured by CBT! This is a terrible misunderstanding amongst the many doctors who like to push it when they don’t want to pursue further investigations. He also wrote that I was inconsistent about one of my sleep medications so I should be monitored. The problem is that he knew nothing whatsoever about the drug in question, and just assumed it’s a simple thing. It isn’t, because it treats some aspects of the insomnia, but not the RLS, which it aggravates. Drugs are rarely neither fantastic nor especially targeted, and it’s ridiculous to blame patients for all the problems and side-effects that arise because of a lack of specificity. 

It’s peculiar that we need mountains of evidence of physical health conditions, but no evidence is required in order to stigmatise patients with psychological nonsense and by calling them delusional and malingering hypochondriacs and the like. It’s utterly ironic that people with mental health problems don’t feel they can access adequate or appropriate care, while people who don’t see themselves as mentally ill are being told they are delusional and are being pushed into mental health care that doesn’t typically exist in an appropriate form anyway.

I have also found that no one seems aware of the NICE guidelines for any of the conditions that I have because they have not been taught that these conditions are real and often extremely devastating. When children are dismissed as attention seekers with growing pains and eating disorders even though they suffer from EDS, things are pretty serious. A male pulmonary doctor from the local ‘Sleep Clinic’ told me without any further ado to just come off my medication because I didn’t have sleep apnoea and so the insomnia must be in my head. There was no investigation into my sleep problems other than a short interview during which I agreed that the test for sleep apnoea had come out negative. How easy it is to dismiss the problems as poor sleep hygiene and habitual use of benzoes (pill popping) instead of listening to the real life experience and conducting a thorough investigation! There was nevertheless a minor in-home investigation (NOX) that proved nocturnal restlessness (for some reason, I had been refused a proper overnight polysomnograph). These respiratory consultants didn’t seem to have a clue what they were talking about and all the letters from the clinic were fraught with ignorant jargon. After the NOX test I was refused proper medication for RLS because I was already on a sleeping pill! All this, although the point of the exercise was to reform my medication, to look at it carefully and scientifically, and not fob me off as if my suffering was of no consequence whatsoever and I was just on a drug hunt. Sleep deprivation is a form of torture, but doctors have no understanding of this and do not usually care one bit - unfortunately, I have decades of experience of these prejudices. Sleep is a very complex biological function that’s only simple on the surface, why is it then so hard to imagine that it can also go wrong? I could educate them about if they let me, but of course they don’t believe that I can possibly know anything of any value. These people simply do not accept that a certain humility would garner them more respect.

The sleep clinic is another complete farce that’s hanging by a thread. The sleep device didn’t even pick up my real sleeping times so the assumption was made that I had been asleep when the device turned on and off (10pm-7am), and no one even bothered to check it manually e.g. by asking me. I was barely asleep only for two hours, 5-7 am, because again, I DO actually have genuine insomnia and that’s why I was there! As I have explained before, I am not stupid and I have wrestled with the condition for decades in a very real and raw way, and tried all manner of alternative approaches because I had no choice. This is not maladaptive behaviour, by the way, they are perfectly reasonable attempts at solving a huge problem that I have to face every single night. Why are they offering tests to insomniacs and then expecting them to sleep like normal people, and then completely fail to interpret the results correctly? This is not the only test that has been poorly interpreted. I was discharged without even a proper follow up appointment. I was offered one after I complained, but I lost interest in making a long and difficult journey for a pulmonary consultant I had no respect for.

In my opinion, the placebo principle is really only an acceptable tool within scientific research, and that it should not be used willy nilly in order to fob people off. For lack of a better way of describing it, I’d nevertheless like to add that I’ve come across therapies on the NHS that seem to work by placebo principle. In 2018 I came across ‘sound therapy’ for tinnitus and hyperacusis. I do not believe this therapy is based in real science, and I am not the only one who thinks this, of course. Only one, very weak study is usually cited in support of it. The audiologist who received me attempted some CBT on me: she tried to get me to admit that I was fearful of sounds and believed that fear caused the problem and that I could be cured if I just snapped out of my fear and stopped protecting my ears. These people do not trust the patient’s lived experience even when it’s the same across the board, and they are not being educated in all the new evidence that’s building up. Suffice to say, I am not fearful of sounds and the damage done to my ears is real physical damage and likely neurological. She also parroted the mantra that ‘sounds can’t harm you’, a trope that expresses the complete lack of understanding of this condition amongst the medical professionals, and that has also been the cause of worsening hyperacusis and countless suicides. It’s like asking people to walk on a broken leg because it will not heal otherwise. She would not even consider offering sound therapy while I was still wearing ear plugs, it was a kind of patronising emotional blackmail really (‘You can’t have this goody if you don’t do what I ask’). I asked her if she would tell an autistic person the same thing, i.e, to just get on with life without protection against sensory overstimulation, and she said yes! As it happened, it was different medical negligence that eventually made my hyperacusis condition so bad I even received some monetary compensation for it.

It shocks me how often doctors have tried to pressure me into ‘confessing’ that I am anxious, fearful and stupid - it reminds me of religious cults. Dr M simply denied having suggested that I was ‘stupid’, but didn’t appease my interpretation which is that he intimidated me and thus clearly  intended for me to feel stupid. In relation to hyperacusis, mindfulness therapies have been suggested, but I am not convinced they should appear in a medical setting (i.e. woo woo should stay out of clinics). Last autumn, I was offered ‘desensitisation therapy’ for scars. The principle behind this treatments is similar to that of sound therapy: you subject your body to irritation several times a day and thus supposedly reprogram the brain to become less sensitive to said irritation. After a few months you should see improvement, but if you don’t, then it’s because you simply don’t want to get well. I have seen for myself how the tone in some of my medical notes have gradually turned accusatory because I wasn’t getting better, and this also reminds me of religious cults. 

I can’t help but feel that therapies that, ironically, rely on an almost obsessive 24/7 attention to the problem, makes it easier for the clinician to blame their patients for a poor outcome rather than assume professional responsibility for a poor therapy. It’s my firm opinion that these therapies don’t do anything whatsoever and that many people simply improve by themselves. But ironically, no one talks about the placebo effect in this context. I have heard countless and very serious stories of people with hyperacusis who tried sound therapy and got much worse (or at the very least, didn’t improve). As I said, I was recently offered the desensitisation therapy for scars, but after looking into the therapy online, I declined, and the scar sensitivity improved just fine all by itself. For someone with my kind of centralised chronic pain conditions, irritation of any sort does NOT help. Compare this with the GET therapy that was finally withdrawn after having caused countless people with ME to deteriorate. It’s the same principle.

2.8 More misdiagnoses 

When the day of my neurology appointment finally came, for some obscure reason I was also denied access to a proper neurologist consultant. Had they read Dr M’s verdict, maybe? The mirroring effect between the two consultants is so uncanny, I do wonder if they were in cahoots. I had to get patient transport there, it was far away in England, and a huge deal to me. I was genuinely struggling to keep up with medical appointments. It was early in the morning, I had not slept more than three hours, and could not defend myself against the next attack on my person. Remember, I was referred for WED/RLS. Yet I was now rapidly told by some male ‘fellow’ from Pakistan (who, shockingly, refused to wear a mask in clinic) that what I have is actually Functional Neurological Disorder (i.e. hysteria or conversion disorder, all in the lousy tradition of Freudian fantasies). In reality, I do NOT have any symptoms of FND whatsoever and so I don’t even meet the diagnostic criteria for this nonsense diagnosis. 

The conditions I DO have, adequately explain the majority of the symptoms I suffer from. I certainly did not require another vague diagnosis of exclusion. In fact it’s completely insane to try and add FND to hEDS, as it only shows a deep ignorance about the Ehlers-Danlos Syndromes and its many faces (many people get the FND diagnosis first, but it is later overruled by an EDS diagnosis). The practitioner completely ignored the reason I had been referred there (the restless legs syndrome!), and later claimed he ‘didn’t have time for it’. But he still found time to talk a lot of nonsense about ‘misfiring neurons’ (which to me is just ignorant pseudo-neurological jargon that explains precisely nothing at all) and even more mind-body dichotomising  nonsense about how the body is like a computer (no it isn’t!!). He thought I should take amitripytline, which is contraindicated for RLS, so it’s a medically negligent suggestion. He didn’t even consider that I have probably been offered this medication numerous times in the past, with very poor results, I may add. He also had time to shoehorn in a comment about ‘health anxiety’ into his letter. I may add, that I gave him NO reason whatsoever to assume I was merely a bit anxious about my health, nor does this comment comply with an actual diagnosis of ‘health anxiety’. His opinion was based on pure prejudice, and possibly the psychiatrist’s letters! He didn’t take one look at the documents about serotonin overload that I had brought with me, and attempted to refer me to a mental health facility in Birmingham - even though my Welsh health board would never agree. He found it necessary to reassure me and my GP that my pathology was ‘non-sinister’. Oh goody. Well let me tell you that not being able to sleep is a pretty sinister pathology since it causes more illness and many contemplate suicide because of it, and the same goes for extreme hyperacusis and tinnitus, which together can drive a person to the brink of suicide. 

Need I point out that besides demonstrating incompetence, all of this also smells of implicit misogynistic bias? I made a complaint and the main issues I raised were acknowledged even though practitioners rarely admit to wrong doing. They did however acknowledge that the WED/RLS referral had been ignored in favour of a useless attempt at labelling me with FND. They said they would change the wording in the letter, but they never did. They suggested other consultants that I was ‘welcome’ to come and see, but I was sufficiently sceptical not to go through all the trouble of going back to see some other biased person who would likely be uninformed about the latest drug recommendations for WED/RLS. The department is a long way away and the journey takes a lot of pain and effort from me, and one such trip was enough. I was also starting to realise that neurologists rarely understand something as common as RLS. It’s actually a global disaster because opioids work the best for most of us but they are often denied the patient out of unflinching prejudice and fear. 

In fact, I now find that I have several conditions that barely anyone understands because they are not taught in medical school and the gap between the real science and practiced medicine is abysmal. There was a call for considering a private session with one of few UK RLS specialists. Due to poverty, I was unable to attend the polysomongraph back in 2014. I went back to my GP of thirteen years and after all that I’d been through, he agreed to keep the treatments between the two of us. I pay taxes too, I said. And I don’t even have any of numerous life style diseases that cost the NHS millions, because funnily enough, I’m actually a conscious and responsible person and not some unconscious and irresponsible hypochondriac.

Something odd also happened when my foot surgeon failed to inform me that my foot hadn’t healed in a normal way. I asked him if everything was alright, and he said, straight to my face, that it was. Instead he thought my pain was from scarring and sent me to one of those placebo therapies, ie. the desensitisation therapy I mentioned earlier. I only found out about the reason behind my pain because I had photographed my X-rays, so I could see the bone that was sticking out in a way it wasn’t supposed to and that the surgeon had lied to me. This lead to more complaints on my part. While the anomaly has now been surgically fixed by a female surgeon, my foot is still in a bad way. I’m mentioning this because it seems to fall under the misogynistic gaslighting that pervades the NHS. I have no other explanation for his dismissal of my injury. I have also recently having had the experience of complaining about my shoulder to a consultant who’s listed as a hand and arm specialist, but he was only interested in my carpal tunnel syndrome and told me off for wanting to discuss my arms and shoulder. He did not deal in arms, he said!

Women have also behaved in weird manners, for instance, a nurse at the local pain clinic whose top of the head I could barely see on the video screen and who cancelled appointments without notice, was determined to find out ‘everything’ about my childhood, presumably with the assumption that the revelation of past trauma would magically cure me of my life long physical pain. She said she was interested in the link between trauma and physical pain. She was absolutely in no position to offer me psychotherapy, yet she tried to pull me into a discussion that was precisely just that. It was a big red flag for me so I immediately broke off the contact with her and the clinic. I am not ‘fair game’ and cannot be expected to reveal ‘everything about my childhood’ just because I am trying to find help with pain. I’m old enough to have spent decades trying to unearth alleged ‘trauma’ and never healed any physical ailments through journaling and introspection, psychoanalysis, faith healing and many other quack therapies before I was finally offered the diagnosis of hEDS and found out that my bodily distress was in fact genetic.

There is something to be said about the lack of life experience amongst younger practitioners. They simply cannot conceive of the way life teaches you to unearth your problems, but also to move on and leave things behind. I do not wish to be coerced into an intimate therapy relationship with ANY practitioner, and serve as a guinea pig to young overly eager wannabe psychologists that I have not been able to choose myself. Just because I have pain, does not mean I am fair game for anyone to practise their pseudo-psychological theories on. I know mental health practitioners will be very defensive about my attitude and suggest that it’s another proof that I’m wrong in the head, maybe I’m ‘grandiose’ for example. No, I am merely expressing my right as a human being to not being coerced into sharing my inner life with random strangers. I find the NHS all around way too nosy about private matters and would for instance never disclose my sexual preferences for any reason at all. 

No information that goes through the NHS is truly confidential, as I have discovered. Yet you’re required to go through this patronising and near-religious ‘initiation’ or ‘confession’ if you wish to access the pain relief of any kind, be it medical or physiotherapeutic (and yes, I had this experience already in Finland when my fitness for work was under investigation). I have noticed that amateur psychology has infiltrated every area of medical practice. When I had tachycardia in hospital, nurses insinuated that it was just anxiety. It wasn’t, I had just been administered steroids, which is really cortisol, the stress hormone. This needs to stop. Amateur psychology should have no place in a serious medical setting because it can lead to misdiagnosis and even death. Serotonin syndrome due to the administration of several psychoactive drugs is a good case in point and the management at RJAH has promised to spread information about it amongst the staff, but I am not holding my breath. The bottom line is, even if a patient is anxious, it’s none of anyone else’s business unless the patient chooses it to be, and they should not be made to feel stupid for it.

2.9 Breach of confidentiality

What I discovered is, that once people like myself have made the mistake of entering a mental health facility, we are automatically stripped of any human rights to complain about the treatment and to be taken seriously. I curse the day I stepped inside the mental health facility. Thinking back, I don’t think I have ever met anyone in my long life who fills me with as much disgust and hatred as the twat who received me at the so-called ‘ADHD clinic’ and essentially tried to gaslight my brains out. Apart from my GP of 13 years, not one person has shown any sympathy or concern for my distress. Unfortunately I have had so many bad experiences with misogynistic doctors that I have become extremely suspicious and cautious. Cultural differences can’t explain all of it. It’s clear from accounts from around the world that it’s a global problem and not just typical of this country.

I have a very big chip on my shoulder about confidentiality. There is the confidential letter I mentioned earlier. I wrote it for the consultant as an introduction to myself from an ADHD point of view (I highlighted signs such as potential rejection sensitive dysphoria and boredom, for example, but received no response from Dr M). This letter has been published with my notes entirely without my consent. It was also copied and pasted into the consultant’s letters along with some twisting of my testimony. He completely mistook it for a LITERAL biography rather than a kind of questioning ramble about certain ADHD-like behavioural patterns that I wanted to discuss. It was a conversation starter, in other words, a bit of chit chat. It was not meant to represent my entire life’s story, but the problem is that by copying it and sharing it willy nilly, the doctor made it seem like it was. When I have had surgery at RJAH, my consent has been meticulously recorded. How come none of this protection applies to confidential mental health data??

I cannot put the horrible incident behind me because these documents are now part of my notes and can be seen by any health practitioner who wants to pry into my medical history. Even my next door neighbour who is a nurse has access to these notes! I’ve already been harassed by her husband and don’t trust that family one bit, and it stresses me every day. When I say that I feel threatened, which I mentioned in my letter, this is the sort of thing I mean. I’m a disabled, widowed foreigner and find it difficult to navigate the social culture in this country, but that’s another story and not evidence of ‘somatisation’ as Dr M wanted it to make it seem. I’m unbelievably distressed by the breech of confidentiality and my mental health has declined dramatically because of it. Chronic stress is the one thing I should avoid in order not to deteriorate physically, and again, this is not rocket science and it is fully substantiated by specialist testimonies online. How can anyone think that the experience I have described is acceptable and that nothing has to be done to reverse the negative impact it has had on my well being? Regardless whether people believe my testimony or not, they should at least respect my feelings.

I thought about the encounter with Dr M every day for years, and there have been times when I have felt suicidal because of him. It may be hard to understand but you get a powerful feeling of helplessness when someone violates your boundaries in a way that feels like rape, even when it occurs on a mental level, and so coolly tries to break your spirit. He basically told me that I’m just looking for answers that don’t exist because I’m anxious, and perhaps I have some physical aches and pains but generally speaking I’m not actually ill at all, and so I should just stop being such an idiot and follow his therapy. What does any of that even mean? He might as well have told me to give up on all efforts to survive, and lie down and die. In situations like this, you feel they want you dead and that you should comply. I had the realisation that this is probably how I would feel if I was raped. I do not think there is much difference between a violation of the body and a violation of the mind, but the latter still doesn’t hold much weight in our society. I’m trying to explain that the mental experience of violated personal boundaries is equally serious. This is the biggest breach of confidentiality of them all.

3. CONCLUSION

My life story has been bastardised by people like Dr M, and it’s deeply disturbing. I do not want my unfortunate, confidential letter in circulation, because I do not agree to being ‘an open book’ for all NHS staff to read. I find it horrifyingly demeaning. It is also not good form for a psychiatrist to make a diagnosis after just one visit, and it further supports the idea that Dr M had no respect for me even though he was of the opinion that I had suffered childhood neglect. Clearly he did not have the patience to decide what my problem was so he made a quick decision that the ‘enduring anxiety’ was still ‘nothing’ and planted the most lowly mental illness label on my forehead that he could find in the DSM. 

Coerced psychotherapy for a non existent disorder is called psychological iatrogenesis, and it’s a serious offence. I am not a clinical psychologist but my impression of this man who purported to be a psychiatrist was that of a person with narcissistic disorder or some level of sociopathy and the gaslighting behaviour that ensues. It’s simply not possible to comport yourself in such a heartless, untruthful, sadistic and entitled manner unless you yourself suffer from a personality disorder. All the signs are there: the gaslighting about the real cause of my ailments and the attempt to make me believe they don’t even exist (or exist anymore, or some such non factual nonsense), the snappy cut offs to shut me down when I tried to explain myself, the sudden sense of urgency, the shaming and the contempt, the exaggeration of my pathologies and deflection from the real issues, the lack of empathetic support, the violation of my mental boundaries, the provocative wording, the meaningless jargon or ‘psychobabble’, the claims that i said things I never said, the attempt to remove my bodily autonomy, the attempt to cut me off from further investigations into physical ailments, and finally, the attempt to gang up with peers in order to prevent me from seeking a second opinion and different point of view. I felt that it was my job to make him kindly towards me by accepting whatever ‘therapy’ he tried to coerce me into having with him, and when it didn’t work, he became vindictive. It’s obvious from his letters how his tone changes from neutral to agitated. All these obvious attempts to remove a patient’s autonomy is the work of a type of cult leader, in fact. But who is going to take this seriously enough and do something about it? These people are left to carry on their sordid games because currently, there are no repercussions.

I hold the professional understanding that people like this are deeply insecure, vacuous human beings and fundamentally scared of both women, emotions, madness and irrational urges in general. It follows that they choose professions where they can maintain an illusion of control. Even better, when the job comes with a fat pay check and they don’t really have to work for it: they can sit there like somnambulents, endlessly repeating the same old clichés. Of course they are not controlling themselves, they are controlling people in vulnerable positions: it’s a sordid power game. They are oftentimes weaker than their victims because they are not just regurgitating clichés but also making it up as they are going along to suit a limited number of pathologies that suit their agenda. They don’t have much self awareness (if any). They do know one thing, and it is that the best way to humiliate a woman or a vulnerable patient is by removing their bodily autonomy and objectifying it: you can do this quite easily by persuading them in the name of your authority, that these people have no cause to trust their own minds, and that they should not be so naive as to believe in their body’s ‘signals’ because these signals are created by themselves in their own head. The dichotomous and ridiculous computer model for FND comes to mind: your self is supposed to be the software and your body the hardware, and you’re just messing things up and creating physical problems because the ‘self’ that’s believed to reside inside the head is anxious and neurotic. One doctor thinks ‘neurones misfire’ and another that there is nothing wrong neurologically at all. It’s all a great big guessing games with no foothold in science. Then they get peer support to back up their theory so it seems even more authoritative. It doesn’t mean any of it is healthy behaviour on the part of the practitioner.

Both true hypochondriasis and true ‘somatoform disorder’ would seem to be very rare, yet it has been said that about 50% of all patients are labelled with some form of psychosomatic delusion or health anxiety in the medical notes, often by doctors who are not even trained in psychology. Most women like to say they know their own body and that it’s ‘telling’ them things, and men with an exaggerated desire to control, dominate and possess, hate female autonomy, and will therefore try and shut the women down. Health practitioners with these traits are especially threatened if these women also educate themselves about their bodies on the internet and prove them incompetent (there are, of course, plenty of scientific articles on the internet that smart people can gain from, so sources are not just trivial ‘google doctors’). These men who believe themselves to be guardians of reason, but are anything but analytically minded, want to instil a fear of the unconscious in other people. It’s as if they were trying to exorcise a bad spirit through shaming and intimidation. The witch hunts of old come to mind. Women must be made to think that they are not in control of their body and mind. In other words, they must submit to doctor’s orders and accept a diagnosis of delusion. This can also happen to anyone who happens to be vulnerable because of their pathologies and need for medical assistance. At its worst, the modern day witch hunts translate as homophobia and transphobia, also, since many doctors still equal non-conforming sexuality and unconventional gender identity with mental illness. All this is classic gaslighting, and it is what narcissistic men do in order to dominate their victims. They confuse and manipulate. 

Confuse and manipulate is what Dr M tried to do to me, whether he himself is conscious of it or not. If anyone with some clarity of mind bothered to read his letters, they would see how garbled his thinking is. He uses provocative and offensive descriptions e.g when he claims that that I manipulate medication, self-medicate on magnesium, hold beliefs about my body that aren’t true from his point of view, am preoccupied with my symptoms, and ‘refuse to listen’ to medical advice. In a normal world, I would go and talk about this with a more qualified psychiatrists who could reverse the diagnosis, but as I explained earlier, I am too scared to do that now. If there’s one thing this pitiful man managed to do, it was to instil an anxiety that wasn’t there before. I have tried to laugh it off, but I can’t, because I know that he’s getting away with transparently discriminatory behaviour towards others like me, and no one does anything to stop it. It has been stated that evidence isn’t considered necessary within the context of psychiatric care, but that’s blatant quackery. We are all dependent on doctors, and so they can maintain a co-dependency against our will. This is a horrible, horrible situation, and I would obviously never choose this for myself if I had a choice. I have no doubt he and his likeminded colleagues are out there ruining vulnerable people’s confidence as we speak. Unfortunately, public health services offer some useful things humans cannot do without, but is also a hub for all sorts of delusions of grandeur.

Personally, I am not even confident that genuine ‘somatoform disorder’ exists, and if it does, it must be extremely rare. I don’t know what it’s supposed to look like, and I doubt anyone does. No matter how much I try to focus my mind, I can’t induce pain in any part of my body, at best maybe a little bit of a nervous sensation in the pit of my stomach, and so I can’t fit this diagnosis into any experiential frame of reference of my own. I might as well try and move objects telekinetically with my mere thoughts, and I do not believe that humans can do that just as I do not agree that thoughts have much direct affect on the state of the body. I can stare at a pulse reader and tell my heart to race, but nothing happens to my heart. The diagnostic criteria in the DSM-5 are at any rate nebulous at best, and far too open to interpretation and abuse to be a truly useful diagnostic tool. The diagnosis looks to me like an invention or a construct with no real scientific foundation, conveniently designed by male psychiatrists for the purpose of controlling women and other vulnerable people. The diagnosis is so clearly designed to remove the patient’s autonomy and keep them from using public health care. Unsurprisingly, it’s centred around the patients’ bodies, promoting the idea that a patient’s trustworthiness in regard to their own body should be questioned at all times. This is very different from saying that somatic disorders cause psychological distress. The questioning is in fact not much different from a criminal investigation, presumably because patients are considered potential criminals who may be abusing the health care system. For ME, as the patient, the diagnosis has not served ANY constructive purpose whatsoever. Instead, my reputation as a good person and a good patient has been severely tarnished and I’ve already been pointed at because of it. 

The purpose of being diagnosed with any disorder should serve a positive and practical purpose, and it should obliviously not drag people down, undermine their self esteem and make them feel guilty about their health issues. In my own life and in that of other chronically ill women, I have observed a bias: male doctors seem all too eager to jump on psychological diagnoses, but they drag their feet to offer physiological ones even when it concerns disorders that are already established within the scientific community. There are also charities and groups who are working very hard to raise awareness of all the disorders I suffer from, and the reason they have to do that is because of the systemic discrimination against disabled people that’s still occurring everywhere. All that the nonsense ‘mental’ diagnoses they have tried to impose on me do, is subject me to an ongoing and utterly bizarre, misogynistic objectification of my body. I hope that I have demonstrated that the ‘somatoform diagnosis’ is a hat trick at best, the magical illusion of a sleight of hand, and to use it to disguise a real medical investigation is not just lousy, but seriously negligent.

In a sense I do not take the abuse personally, but sometimes I wonder if it’s actually worse because it’s impersonal and institutionalised, and you never know when the rug is going to be pulled from under you. I am amply aware that this happens to most women who go to see a doctor about pain, fatigue and menopause. My history and current life situation was irrelevant to this practitioner Dr M, and whatever I had revealed in my unfortunate letter, was used to pin me down for one thing only, and that was an overactive imagination. You can probably imagine how  little people who say this sort of thing think of the imagination at large, and how ridiculous the whole thing is. Whatever personal agenda he had was unfortunately facilitated by the fact that the gaslighting of vulnerable people is quite the trend today. I have seen countless stories about gaslighting especially within the EDS, RLS and hyperacusis/tinnitus communities, and I know that for some bizarre reason, the way I was treated is ‘routine’ within NHS mental health care. This is corroborated by the fact that his colleagues were very quick to jump on the bandwagon and support his ‘professional’ opinion. Considering their sloppy attitude, I would, quite frankly, rather die than subject myself to more of their sort of counselling. 

Perhaps the worst part of Dr M’s report is the commonly expressed prejudice that female patients are unreliable witnesses of their own body and incapable of objectivity and scientific thought. I was once told by a female psychiatrist that my consciousness was muddied because of my close relationship with my body. What on earth is that even supposed to mean? The only muddied thing was the brain fog that I had from fibromyalgia, which was finally diagnosed a few years later. Clearly people like this have no idea what embodiment really means. Clearly there’s a profound social problem if women with pain and fatigue are equated with unintelligent imbeciles. If you look at the removal of women’s self-authority from a historical point of view, you will find that persecution of women who pursued medical interests and a denial of women’s right to pursue the sciences has been the norm. But context also matters. You wouldn’t tell a scientist who works in a laboratory that they are overly preoccupied with the subject of their obsession, because it is assumed that their subjectively driven passion is firmly held apart from their objective methodology. Yet somehow it is perfectly admissible to vilify people who are interested and educated enough to try and understand their body’s functions and health concerns in the comfort of their own home. The people who take on the role as the gatekeeper’s of science are really just juvenile hyperbolists who are pointing fingers and laughing as they write their ‘objective’ nonsense reports. Not long ago, the scientist who served to advance our understanding of pathologies, were often self-taught individuals who did not have an office to go to, and quite often, they were artists. I may or may not leave a legacy behind but what I do know is that my interests are constructive and life affirming, and that whatever theories I like to develop about embodiment as a disabled person, and the reality we live in, do not concern a petty psychiatrist in a small town clinic.

People have even been refused help because doctors think EDS is just a trendy illness to have! Instead, if they could imagine that people are simply coming out of the wood work after years and decades of misdiagnoses, they would demonstrate some lateral thinking skills. The misdiagnoses are so common, even the Ehlers-Danlos Society’s brochure makes a point that EDS is often mistaken for a mental illness. It is not a disorder that gets any better over time, and it is hard to manage over a life time. You simply can’t say that we merely ‘start off with a disorder’ and then imagine the rest. This sort of assumption is utterly bizarre. Sadly, the gaslighting doctors fail to see that they are following erratic, discriminatory and patriarchal trends that should be obsolete by now. This is why I have no more trust in doctors. I can no longer talk to them in the truthful and honest way I used to. I have already found myself downplaying symptoms because I was worried about being labelled as a hypochondriac again. I feel like I’m in a prison because I am forced to depend on them against my will. The situation feels dangerous also because I’m getting old and may fail to seek help in an emergency, and I live alone and don’t have anyone else there as security in case something happens. My health conditions have deteriorated a lot since 2020 and I have not even been able to go to Newtown at all though I really need new glasses and really should attend mammography, and so on. I suppose the gang of supercilious bandits at the NHS think this is funny, too (I don’t mean that they are literally laughing, only quite content with their mockery).

Medical PTSD is a reality. Some researches call this ‘clinician-associated trauma’ [https://www.chronicpainpartners.com/medical-gaslighting-as-a-source-of-clinician-associated-trauma/]. So far, my attempts at being heard have only led to more gaslighting.