Living in France, stuck in the FND Trap
04 May 2026
vi_toka
Sufferer
vi_toka
Sufferer
9
Before any testing could take place, in the presence of disordered reflexes associated with organic neurological disease, my neurologist wrote on my record that the diagnostic hypothesis was one of FND. Not for any “justifiable” reason - if such a thing truly exists! - but due to my “history of psychological trauma”.
Ten years ago I lived a different life. I was addicted to alcohol and with any addiction comes vulnerabilities, in my case, as a young woman, to sexual violence and abuse. In September 2016 I left for university and came back before my first year was over. I was profoundly traumatised. I have not touched alcohol since. I was diagnosed with PTSD sometime around my 19th birthday in 2017 and have been in treatment ever since. There have been highs and lows, but I was on track to recovering fully. EMDR was working very effectively; I was attending counselling; I had recovered from agoraphobia and was no longer having flashbacks. Nonetheless, I fell ill, and immediately all could be traced back to one thing: PTSD. Which neurology translated to FND.
I had a non-contrast MRI of my brain and spine at the beginning of my illness, where demyelination was found in my brain, “a bit too much for the patient’s age”, but too non-specific to be considered indicative of MS. During that first month I began to get severe migraine headaches, I was confused, couldn’t follow instructions anymore, my pupils would randomly dilate and I felt worse than ever. I saw the neurologist again. “I don’t really know what this is,” she said. My form came in the post: “diagnostic hypothesis: FND”.
The next month I began to have brief breaks of psychosis, delusions, confusion worse than ever, and eventually seizures. I saw a psychiatrist who immediately ruled out a primary psychotic disorder. It simply did not fit. Psychotic disorders do not behave that way.
I saw the neurologist again: FND. I told her I was having seizures and she said I wasn’t. I told her I was going psychotic and she nonchalantly noted it down but probed no further. I said: I think I’m having seizures. Shouldn’t I get an EEG?
It was then that the response that would continue to follow me was given: no. “Why?” Because if we give you medical testing, it’ll only reinforce the idea that you are actually ill.
Such a phrase was repeated at A&E. Such a phrase was repeated by the next neurologist I saw. Such a phrase was finally repeated by my eventual consultation with the FND team at the nearby city hospital. Not only that, but they said they would not treat my “FND” as I did not “adhere to the diagnosis”. They claimed if they gave me any testing I would “just come back wanting more”. My husband asked them: is it not a greater risk to miss a serious neurological disorder than it is to potentially indulge some undiagnosed mental disorder? I had already seen a psychiatrist who had ruled such a thing out. They said no. We kept asking, over and over again, how and where FND would cause psychosis and delirium. They said I probably just had a mental illness. I asked how they could possibly diagnose my seizures without an EEG. The same answer: we’re not testing you.
Every doctor I see sees FND on my chart and simply does not bother investigating further. I’ve never truly been able to receive a second opinion because the first is so heavily relied upon. FND is an easy open-and-shut case. They don’t need to order any testing. They can just say, yeah, well, your symptoms are a bit too strange to be anything real. It can only be FND.
After weeks of asking, I was finally sent my notes from the neurologist who formally diagnosed FND. It was so full of omissions as to be deeply concerning. Nowhere was any symptom I’ve described above other than my difficulty walking and weak legs mentioned, except for my tremor, a long (since childhood!) established essential tremor inherited from my father, apparently also being “functional”. No mention of having seizures, psychosis, delirium, any of the headaches or the nausea or autonomic symptoms. Nothing about the fact I often struggle to breathe and clear my airway. Nothing about the fact my behaviour has rapidly become so off-the-wall that my husband can barely sleep at night either. The “neurological exam” section incorrectly listed my handedness as right-handed, did not mention the Hoffman’s sign verbally acknowledged during the exam. My “trigger” was written as ending my PTSD treatment, something which was factually untrue - I had stopped attending because I was too sick. Across the letter were mentions of myself and my husband not accepting or adhering to my FND diagnosis and that there was nothing they could do in such a case.
But most concerningly of all, my husband had mentioned the possibility that I could have a form of autoimmune encephalitis. I have almost all of the symptoms, a textbook case. My GP had once agreed with the possibility and a previous neurologist said it was possible, even if he still believed I had FND.
In the letter, the recommendations were not to do any further testing, which was concerning enough, but they explicitly stated “particularly not for autoimmune brain disease”. No justification given as to why I could not have an autoimmune brain disease. I have a family history of autoimmune disease. I have a textbook case of an autoimmune brain disease. Still. The instruction was not: patient believes this, rule it out; patient has some signs of this, but it is unlikely. The instruction was explicit.
I’ve tried to reach out to reference centres for rare neurological conditions and they come back saying I ought to trust my neurologists’ assessment that I have FND. Last I heard, they were reaching out to that very neurologist, who will of course tell them I have no possibility of having anything other than FND, as was stated in my report.
One night in February I was having such trouble breathing as to lose my voice altogether. When the doctor on the phone found FND in my history the complaint was treated as non-urgent and an on-call doctor was sent around who said to my husband, before even seeing me, that she was “in agreement with the FND diagnosis”. She injured my drooping eyelid attempting to yank it up to demonstrate to my husband that I was “faking it”. She left, saying she was 100% sure I had a psychiatric disorder, FND, and was subconsciously feigning illness.
I’ve described my FND diagnosis as a weight tied around my neck as I’ve been thrown into the ocean. Every day I get worse. I never for a second feel any better and the progression is so rapid I simply do not have weeks to months to sit around waiting for some outpatient facility to give me an appointment. I’ve cried harder than I ever have in my life, so sick in a way I never knew possible, left entirely without any opportunity for help. I’d have some understanding if they’d tried to figure it out but couldn’t. I wasn’t even afforded that privilege.
With my diagnosis being based on my PTSD, I have often heard that my trauma is “stuck in my body” or “expressing itself through my body”, and that’s what FND is, and that’s what is wrong with me. Textbook hysteria, pioneered by Freud himself a hundred years before I was born. I feel like I am being punished for being a survivor of sexual violence, with the FND diagnosis being the punishment as it means myself and my loved ones suffer greatly, experiencing and watching my rapid decline into madness, greater physical and cognitive disability.
Could I ever say I know enough about the brain to discount FND as a possible illness entirely? No. But have I read about FND, day and night, as is frequently recommended by its proponents to gain a greater understanding of one’s condition, only to find that my experiences simply do not even fit the vague diagnostic criteria given? Yes. Have I become skeptical from receiving an FND diagnosis in mere minutes, without testing, from doctors who say it’s my “trauma expressing itself”, and am told there is some positive sign, which never happens to be the same, and is only ever applied to the weakness in my legs and not the plethora of other problems I have? Also yes.
Do I feel that FND is a diagnosis neither of exclusion or inclusion, but of neurologists confronted with something they admit themselves they have never seen, and want an easy answer? In my experience, I do. My husband wondered if pretending to play ball and getting FND “treatment” and not recovering would urge them to reconsider, but I later found out that most people diagnosed with FND never fully recover, and many worsen. It would prove nothing.
My neurologists have, in my opinion, diagnosed FND because they want to diagnose FND. They see FND because they want to see it. When confronted with the fact that many of my symptoms are not even part of the already hugely vague list, they simply do not even note them down anymore.
My decline has been, and continues to be, very fast. I’m not someone who can live like this for years. With my breathing more and more affected, my delirious actions more high risk and the constant seizures, I don’t even know if I’ll see through the rest of 2026.
As I write this, I’m a month short of my 28th birthday. There have been so many opportunities - no, not opportunities, but obligations - for doctors and neurologists to reconsider my FND diagnosis or at the very least initiate further testing to rule out organic causes as my illness worsens inexplicably and in no way typical of FND. Death or permanent disability are now very real risks in my mind. I am very afraid. I so often find myself saying - sometimes flippantly, sometimes anxiously - that I think I am dying.
Whatever happens to me, I don’t want my story to be forgotten. I don’t want the French medical system to get away with this anymore. I don’t want any other young woman with a history of trauma to be slapped with a label that prevents her care no matter how ill she gets. It is a grim irony that the men who caused my PTSD would not, in my situation, be lumbered with an explanation that their trauma was simply “expressing itself”.
The psychologisation of medicine kills. Medical gaslighting kills. And I am sick to the back teeth of hearing FND advocates insisting “that doesn’t happen, FND is diagnosed with rigorous testing and rule-in signs”. It does happen. It is happening to me and I fear it will, very literally, be the death of me.
- Relentlessly progressive course steadily accumulating symptoms over months with no sustained improvement or fluctuation. Classic FND is typically variable, waxing and waning, and often shows periods of spontaneous improvement.
- Prominent encephalopathic features delirium, psychosis, catatonia, and rapid cognitive/personality change. These are not core features of FND and are far more suggestive of underlying organic brain dysfunction, such as autoimmune or inflammatory encephalitis.
- Objective hard neurological signs positive Hoffmann's sign and MRI findings of demyelination described as too much for age. FND is a technically a diagnosis of exclusion that requires symptoms to be incompatible with recognised organic disease.
- Lack of documented positive FND signs for most symptoms only leg weakness appears to have had such signs recorded. Surely a robust FND diagnosis should document specific rule in signs (e.g., Hoover's sign, entrainment, give way weakness, etc.) for each major complaint.
- Clear post infectious trigger plus strong family autoimmune history both are well established risk factors for autoimmune encephalitis and other neuroinflammatory conditions that require proper rule out, not dismissal.
- Psychiatrist explicitly ruled out primary psychiatric disorder this significantly weakens any trauma based or psychogenic explanation for the neurological picture (for those following the CD model that is sometimes still used in FND).
A thorough, evidence based response would have engaged with these points directly instead of defaulting to the assumption that any mention of FND automatically makes further investigation inappropriate. Patients and families are right to expect that serious, treatable differentials especially post infectious autoimmune encephalitis are systematically excluded when the clinical picture does not fit the FND pattern cleanly.