Hypermobile Ehlers-Danlos Syndrome and medical gaslighting - doctors’ words

The process of tapering off an opioid that was meant to treat the restless legs syndrome I was misdiagnosed with brought about a lot of angry rumination about injustices around midnight. This is not unusual. Drug induced motor restlessness aka akathisia can bring about a change of character and luckily in my case, the anger I felt was relatively mild and directed at genuine injustices rather than innocent people. It also didn’t last that long.

During this time, I thought a lot about the medical gaslighting I’ve been subjected to since I was a child and decided to make a list of some of all the dreadful things doctors have said to me or have written about me in the past. They should understand that I will never forget, and certainly not forgive. Why should I? So here we go:

1. At age 10 the school doctor discovered a serious anomaly in my spine, it was tending towards scoliosis and a lumbar kyphosis. Nothing was done about it. It was said that I should just finish growing before an intervention could be done. I stopped growing at age 15 (I’m just 5 ft tall) and suffered a lot of back pain. I went in for a check up at the paediatric hospital Aurora in Helsinki when I was 17 but they discharged me with the words ‘we don’t know what the problem is’. At age 19 I finally had a fusion surgery with a Wiltse approach at the orthopaedic hospital. No one gave me any explanations or words of sympathy and sent me off with a desperately deformed back that I’ve spent a life time trying to hide. The psychological consequences of the deformity have been dire but no one has taken me seriously. I didn’t even know what to call my condition. As a child I was also told I had ‘X-legs’ which didn’t exactly help me feel any more confident about my body. Apparently they meant knock knees but I never even knew the word until very recently.

2. I suffered from a lot of severe stomach pains in my twenties and decided to see someone privately. Back in the days it was impossible to do research on doctors. The doctor I went to see looked pained, and just told me to go out and enjoy the sun. That was it.

3. Because I had suffered chronic stress in my childhood, it was automatically assumed that I was mentally ill and that I ‘somatised my anxiety’ and had some confusing mix of personality disorders for which there was no empirical evidence. I received a permanent disability pension age 36 on grounds of depression, and was told that ‘Too many people have back pain’ - in other words, mine didn’t count. The hypermobility was laughed off because ‘it can’t cause pain’. When I tried to put words to my sense of interoception and self-consciousness, a physiatrist at the assessment centre told me ‘If a millepede thinks about its movements, it won’t be able to move’. During the disability assessment I tried to explain to a psychologist that I don’t feel very attractive because of my deformed body but she dismissed my concern upfront with the words, ‘But you’re pretty!’. 

4. In my late 30s when I had already been diagnosed with fibromyalgia in Helsinki by the only ‘specialist’ in this condition, I went to see a rheumatologist in Västra Nyland called Dr Per Franzen. He had me run around the block with him. I was in pretty good shape because I was desperately trying to manage my illness, but I would only manage a short run like that. He said to me: ‘You suffer from a first world problem. You should take up volunteering and run the marathon’. In other words, he didn’t believe anything was wrong with me because I could run a few metres.

5. I had a botched bunion surgery when I was 15 that left me feeling restless and distressed. I can now see that feet are extremely histamine rich and that I probably suffered negative consequences from the intervention on more levels than one. Later in my 30s the surgery was done again, but this time, the wound didn’t heal. I was offered two courses of antibiotics before my boyfriend discovered a piece of white thread inside the wound. As a result of the mismanagement, I developed an autoimmune condition of the pelvis called vulvodynia. The pelvis is also unusually rich with histamine receptors, and this could relate it to mast cell activation. The first Finnish female doctor I went to see was convinced that all I needed was sexual therapy. The specialist my boyfriend found online was able to confirm that I did have a genuine painful and chronic autoimmune pelvic condition - thankfully, my boyfriend now believed it, too. Before all that, one gynaecologist wanted to make my vagina less tight surgically. Things worked out just fine without it.

6. When I lived in a coastal town in Finland I asked to have surgery on my right foot’s bunion so the two feet would be equally wide, but I was met with these words: ‘Not fitting into shoes is not a reason to have surgery’. The foreign consultant I went to see said he would just chop off the extra bit and it would be so simple. The head orthopedist at the hospital then actually talked me out of it. It goes without saying that i was extremely traumatised by my feet and the inability to find footwear up until 2019 when the surgery was finally done properly with fusion on both feet at the orthopaedic hospital in Oswestry. Unfortunately due to Covid I had to wait a couple of years for the surgery of the bunionettes and when it was finally done, the tiny screw in one of them dislocated and left me with pain. The doctor tried to hide this. I also have pain and discomfort from the repeated butchery of my big toe.

7. When I developed serious problems with sleep in my early thirties, one Finnish GP said ‘it must have something to do with your life style’. I didn’t drink and I wasn’t obese, and didn’t lead a crazy lifestyle in general, so I can only assume that by lifestyle he meant that I was a woman.

8. I wasn’t diagnosed with hEDS until 2018 in England when I was 52. During Covid, I saw references to ADHD online and started to ask myself if I had this condition, too. Perhaps mildly, because I didn’t fit all the criteria. I was referred to a locum psychiatrist called Edwin Martin who bombarded me with an array of strange suggestions that had nothing to do with ADHD though the clinic was actually named ‘ADHD clinic’. Hm? He was clearly into mind reading, remote viewing and some kind of clairvoyance. He quickly dived into the topic of my sleeping pills though he didn’t listen long enough to hear my full story and list of medications. Judging by his accent, he was South Asian. I’m sorry to say I have never met anyone with a more condescending, disingenuous and downright creepy attitude towards a woman. There I was, a disabled female foreigner trying to understand another foreigner and their dialectal jargon, a ridiculous proposition to begin when you’re dealing with extremely sensitive personal information and chronic illness. The culture clash and the humiliation was made so much worse because I received zero support from anyone when I complained about it afterwards. With ear plugs in my ears, a lack of familiarity with foreign accents, and his mouth behind a face mask two metres away, I couldn’t make out a lot of what he said. but after a strange story about a schizophrenic who was visiting many clinics that I failed to follow or understand the point of, he did say the following: ‘I don’t know you when you’re on this medication’. He was implying false familiarity just ten minutes into the appointment - very creepy indeed. ‘When was the last time you went a week without thinking about your symptoms?’. Now he was implying hypochondria. ‘What will you do when the neurologist finds there is nothing wrong with you?’ (I was referred to neurology for RLS). Yes, more scanning for hypochondria without even waiting for a response. ‘You’re here because your strategies aren’t working for you’, he claimed. Now this definitely had nothing to do with my desire to discuss the possibility of ADHD/ADD. In other words, his questions were statements, not actual questions, and they were disrespectful and presumptive. He quickly decided that the stress in my childhood had made me anxious and made a huge diagnostic leap to the conclusion that that was all that was wrong with me even today: apparently I ‘somatised my anxiety’. Funny how apparently you can somatise your whole skeleton and all your joints into crumbling, just like that! He finished off by saying, ‘Hypochondriacs often start out with a real illness’. He decided that my adverse reaction to the stimulating medication he prescribed for my insomnia was due to a nocebo effect. He wrote nonsense letters to the GP I had been seeing and said I was self-medicating on magnesium and manipulating my medications (eh?). My symptoms didn’t match the conditions I thought I had, he concluded. He never checked my health records and obviously knew nothing about real medicine so did not have the authority to have an opinion on hEDS and its disease progression. When I challenged his authority on neurological matters, he yelled that he wasn’t neurologically trained. The letters he wrote over my head (I did not receive a copy) and the things he said in clinic were totally different, and I can only assume that he was deliberately trying to fuck with my head and get me down in some kind of vindictive gesture against me as an educated Nordic woman. When I looked up his diagnosis of somatisation, I couldn’t find it anywhere. Only later did I realise he’d picked it out of the 1994 edition of the DSM! Yes, you heard me right. He was referring to a thirty two year old book - a book from the last century - on mental diseases! I have written a separate blog post about this encounter because it was one of the most traumatic I’ve ever had in my entire life. I still think about it almost every day.

9. When I did see a neurologist, they had assigned me a trainee called Ravi Jaipuria who quickly decided I had functional neurological disorder (FND) and wrote that I seemed anxious about my health (apparently he knew little about neurology but plenty about psychiatry). Funny enough people go to the doctor because they have a concern about their health. Is this anxiety? Well, mind readers seem to think so. While failing to wear a face mask in times of Covid, he tried to twist my painful and osteoarthritic wrists without my consent. His findings were ‘unremarkable’ which should have discredited me from the diagnosis he decided on (FND is a diagnosis of exclusion!). He suggested taking Amitriptyline even though I said I do not tolerate serotonin agonists, so clearly serotonin wasn’t really on his professional radar (I sincerely doubt he knew anything about Serotonin Syndrome, that plonker). Apparently he didn’t have a clue what dysautonomia is, and didn’t acknowledge that I had been referred there for restless legs syndrome. I tried to get FND removed from my records as it was confusing other doctors and threatening my treatment plans, but was instead offered another appointment so they could reopen an investigation into my health issues. The locum Dr Ali Ahmed that I was assigned this time (yes another locum…) wrote to me that EDS and FND can exist side by side. Apart from the fact I don’t meet the criteria, I don’t really believe it can. Some folks find the diagnosis helpful, and that’s fine if they really do meet the criteria. But in my opinion FND is primarily used as a nonsense diagnosis that explains precisely nothing about the reasons behind the symptoms it pretends to cover, and attempts to turn them into a case of mental health and hysteria. People don’t seem to realise that it’s listed as psychiatric diagnosis in the DSM! For some EDS people, symptoms of POTS and Mast Cell Disorder could in any case mimic FND. I didn’t meet any of the criteria so in my case, it was used to try and send me to a psychiatric unit in England, a referral the Welsh medical authorities wouldn’t even consider funding anyway. I’ve tried to contact the secretary and PALS - no one is responding. I have explained that I have disabilities that they are obliged to accommodate in accordance with the Equality Act, but they seem to refuse. It’s hugely stressful. There is nothing worse than being treated like trash by a bunch of nobodies with Dunning-Kruger syndrome just because you’re naive enough to try and seek help from an instance that is supposed to… offer help. Thankfully I now receive help from a support worker from Sense, so we shall see.

10. I was diagnosed with restless legs syndrome by the same GP who failed to test me for oestrogen deficiency and just kept upping my estradiol dose, and a scatty headed pulmonary consultant at Maelor so-called ‘sleep clinic’ (the in-home test was a joke and falsely interpreted). In actual fact I had drug induced motor restlessness (also known as akathisia) that wasn’t challenged until AI pointed it out to me. I wrote all about that in my two previous blog posts. Another pulmonary consultant wrote some nonsense about my eating habits before bed time without actually spending more than a couple of minutes with the issue of my decades long insomnia on the telephone (the appointment was mostly about my lack of sleep apnoea).

11. I suffered auditory shock in 2018 when a pesky Welsh comedian decided to shout into the microphone while I was sat right in front of the speakers. I was diagnosed with hyperacusis and tinnitus and sent to the audiologist’s colleague at Maelor hospital. She poked around and tried to suggest that the fact I’d been carrying ear plugs in my car before the incident suggested I had fear of sound. ‘Sound cannot hurt you’, she claimed. She tried CBT on me without my consent, for instance, she asked, ‘What are you going to do about the neighbours when they are being noisy?’ I didn’t know what to say at the time but I wish I had responded to such a stupid question with the words,  ‘I would just send the boys around’. She refused to offer sound therapy while I still wore ear plugs to protect my ears. I asked her how she treats people with autism and she said, ‘just the same! I ask them to take their protection off!’. Needless to say I never wanted to see her again. She was actually a cochlear specialist.

12. After the botched hysterectomy (which was initially blamed on an ileus and my body in general while the damaged ureter remained undiagnosed for ten days), I had sepsis several times and endured a total of two months worth of powerful IV antibiotics. Unsurprisingly, I developed vaginal yeast (thrush) already at the hospital. The male doctors on call were extremely bothered by this and simply didn’t know what to do, and they certainly did not want to have a look and could not find anyone who would. They actually didn’t know what probiotics are. The men talked very loudly about my issue so the whole ward could hear it (and the other patients were pretty shocked by it). Eventually (I think a day later), one male practitioner brought me some clomatrizone cream but it was just 1% and utterly useless in this case which required proper measures, not a cream for foot fungus. I had horrible episodes of itchy thrush for many months and had a really hard time getting any help because the male GPs didn’t believe me when I said I was crawling out of my skin from the horrible sensation, and just said lighthearted things as ‘You might just be one of those women who have chronic thrush’. The same GP once argued against my choice of bum cream: it was not allowed the cream you can wash off your hands, but was obliged to use sticky ointment that really sticks because he said so! I never went back to him after that and now I’m stuck with Fucidin cream which isn’t even the right kind of product (but it works and washes off easily). I never got any advice whatsoever about menopause and what to expect from the GPs, just estradiol patches that were upped when I said they didn’t seem to work anymore. There’s more about that in another blog post.

13. They put some steroids in the general anaesthesia cocktail without telling me when I had one of my foot surgeries in recent years, and it made my heart race like crazy for quite a number of hours, basically it was a heart rate on steroids. I couldn’t sleep that night. A nurse asked me, ‘Have you thought that maybe it’s just anxiety?’. I can’t remember the number of times I’ve been told that I must suffer from anxiety without any empirical evidence ever entering the picture. When practitioners do that, you should immediately confront them and ask what precise diagnostic criteria they are referring to? That should hopefully shut them up because anxiety is the meaningless buzz word and umbrella term they use when they’re trying to get out of an awkward situation and prefer to blame the patient rather than admit to theirs or some other practitioner’s incompetence. Perhaps also try and challenge them on their competence in regard to the issue or something along those lines. There are so many nuanced words one can use to describe various emotional states so why are they obsessed with the term ‘anxiety’ as a catch-all? The anxiety label is emotionally illiterate, sloppy and misogynistic, and sadly, a lot of women follow the male protocol out of a lack of self-awareness. Even I, as a foreigner, know words to describe nuanced emotional states such as worry, concern, trepidation, alarm, fright, misgivings, and so on… needless to say, I never use the word ‘anxiety’ because there are so many more interesting words out there to use! I have also read notes that underline my contact with psychiatry in the past and stated that my symptoms are unlikely to improve because I refuse CBT. It was unclear which symptoms were being referred to but the same doctor also declared in a benefit’s form that I had OCD, which I don’t have. In Finland, I was required to see psychiatrists because I suffered from insomnia. Before that, I was simply not coping due to overwhelming stress related to the pressure to keep up with society’s demands, and had no choice but to see them and try the pointless therapy I was more or less coerced into. The psychoanalyst concluded at the end that ‘I still had some emotional issues’ and that was that. She also demanded that I pay for a few sessions I had cancelled. When I protested I had no idea I was supposed to pay for them because no such thing had been discussed, she told me I was projecting!

14. I was referred to the pain management team at Bronllys but quickly retreated when the nurse I was triaged with said she was interested in the connection between illness and trauma and said to me, ‘I want to know everything about your childhood!’. Eew! What a creep, especially since I could only see the top of her head on the video. So as a patient, I’m fair game to practice amateur psychology on?? I said no thanks.

Having said all this, my male GP of 16 years (who’s slightly my senior) is hard to read, but he has never gaslit me and seems increasingly interested in my case as new information is unravelling and I have come off the horrid opioids all by myself. I had prepared a letter when I went to see him a month after opioid cessation and he seemed to take it all in with interest and was happy to help me with the bigger doses of sleep medication I still need. He’s open to herbalism and even practices acupuncture on a basic level (although I only ever had one session with him). I’m trying to figure out way to go back to herbal treatments, AI helps in this regard but it’s an absolute slog to deal with.

The artwork is from about 2000, it’s copyrighted and my own.