I Am Angry
Christoff Trüter
Spousal caregiver
I am angry.
Not academically irritated. Not mildly concerned about some interesting disagreement in neurology. Not engaged in a spirited debate about competing models of Functional Neurological Disorder. I am fucking angry.
I am angry because my wife is getting sicker and I still do not know why. I am angry because the more complicated her illness has become, the more time we have spent trying to understand it ourselves. I am angry because I have had to learn terminology I never wanted to know, read papers I never wanted to read, understand neurological examinations I never wanted to understand, compare investigations, chase differentials, reconstruct timelines and ask questions that I once naively assumed medicine would be asking for us.
And before somebody reaches for the easiest possible caricature: I am not claiming that every doctor is incompetent, that every FND clinician is malicious, that every person diagnosed with FND has something else, or that I have secretly solved my wife's illness from behind a computer screen. I haven't. I do not know what is wrong with my wife. That is the fucking point.
I am angry because uncertainty should have produced more curiosity, not less. Instead, functional became a distraction. Complexity could be reframed. New symptoms could be accommodated. Findings could coexist. Another condition could potentially become a comorbidity rather than a reason to reconsider what had previously been attributed to FND. I have written about this problem repeatedly, including in The Common Phenotype Hypothesis and The Falsification Problem. My question remains embarrassingly simple: what evidence would actually make you admit that the original explanation was wrong?
I am angry because somewhere along the way observation started sounding like explanation. Variability, inconsistency, distractibility, incongruence, Hoover's sign and other so-called positive signs can identify clinical phenomena. Fine. But recognising a pattern and explaining why that pattern exists are not the same fucking thing. That distinction is central to what I have been arguing on this site. A phenotype is not necessarily an aetiology. A sign is not necessarily a mechanism. Giving something a name does not mean you have discovered its cause.
Modern FND literature itself describes the move away from requiring psychological stressors and towards an inclusionary diagnosis based on positive neurological signs. It also describes FND as having moved historically through hysteria, conversion, psychogenic explanations and contemporary neurological or neuropsychiatric models. Current reviews explicitly describe that diagnostic transition. None of that is some conspiracy invented by angry patients on the internet.
I am angry at the sanitisation
I am angry that the language became softer while it also became harder to work out exactly what is being claimed. Hysteria is an ugly word. Psychogenic carries baggage. Conversion explicitly invokes a psychological mechanism. Modern terminology sounds considerably cleaner: functional, altered networks, prediction, attention, expectations, agency, learned patterns, nervous-system functioning. Perhaps some of those models will ultimately prove enormously useful. But changing the vocabulary does not magically establish the mechanism, and nicer terminology should never be allowed to launder uncertainty into certainty.
The historical connection is not controversial. A historical review of FND traces the changing terminology through hysteria, conversion, psychogenic and functional formulations and explicitly notes that meaning can be lost when terminology changes. Another study of six decades of terminology found continuing coexistence between multiple terms and concluded that a precise, explanatory and non-offensive term had yet to prevail.
That matters because sanitised language can obscure the proposition the patient is actually being asked to accept. Contemporary rehabilitation literature can discuss attention, expectations and illness beliefs as factors that may inhibit normal movement and promote abnormal movement. That is not my invention either; it appears explicitly in consensus recommendations for functional communication and related disorders.
So tell me what you mean. If you think my wife's attention is perpetuating a symptom, say it. If you think her expectations are contributing to it, say it. If you think her beliefs about illness are maintaining it, say it. If you think a learned motor pattern is responsible, say it. If you do not know which mechanism applies to her, say that. Do not wrap a contested inference in neurological language until it sounds like something somebody measured. I would rather hear an ugly hypothesis stated honestly than a beautiful euphemism presented as fact.
Because there is something profoundly disturbing about sanitising a concept until patients can no longer tell what judgement is actually being made about them. A person can reject the old word while retaining reasoning that has recognisable historical ancestors. Even the US National Library of Medicine still places Functional Neurological Disorder among the entry terms under Conversion Disorder, whose MeSH history includes conversion hysteria and previous indexing under hysteria. History does not prove that modern FND is identical to nineteenth-century hysteria. Of course it doesn't. But pretending there is no lineage worth interrogating is equally absurd.
And when the therapeutic message starts sounding like some variation of you can retrain this, redirect your attention, change your expectations, understand the diagnosis correctly and recover, forgive me for wanting to know precisely what assumptions about the patient's illness sit underneath those words. "You will think yourself better" may be a crude way of expressing it, but sanitising the language does not automatically sanitise the underlying inference.
I am angry that scepticism apparently has rules
I am angry that I increasingly feel unable to speak plainly about any of this without first performing an elaborate ritual demonstrating that I am a sufficiently decent human being to be permitted an opinion. I have to explain that symptoms are real. I have to explain that I do not hate people diagnosed with FND. I have to explain that I do not think everyone is malingering. I have to explain that I do not hate neurologists. I have to distinguish FND from patients carrying the label. I have to say "some clinicians" rather than "clinicians". I have to make sure nobody could possibly mistake criticism of a diagnostic framework for criticism of sick people. And yes, some of those distinctions are important. This article itself makes them. But there comes a point where the demand for ever more careful language stops protecting patients and starts protecting ideas.
I am allowed to be sceptical. I do not owe a diagnostic framework belief. I do not owe its proponents agreement. If I misunderstand a paper, show me. If I misuse evidence, correct me. If my Common Phenotype Hypothesis is wrong, fucking destroy it. Find the evidence that contradicts it and put it in front of me. I would genuinely rather abandon a bad idea than spend ten years defending one.
But calling scepticism hurtful is not a rebuttal. Calling me anti-FND is not a rebuttal. Ridiculing me is not a rebuttal. Deciding that my questions must arise from anger, ignorance, denial, obsession or some undisclosed psychological motivation is not a rebuttal. You do not get to diagnose my motives because you could not defeat my argument. And if you believe I am arguing in bad faith, demonstrate the bad faith. Quote what I actually said. Show where I manipulated evidence. Show where I knowingly omitted contradictory evidence. Show where I changed my standard because the result became inconvenient. Those would be legitimate criticisms. What I cannot answer is somebody's invented version of me.
There is a particularly bitter irony in watching people defend a field that has spent years trying to distance itself from assumptions about patients' psychological states while feeling perfectly comfortable speculating about the psychological states of its critics.
I am angry at a diagnosis that can survive almost anything
I have asked before whether FND is falsifiable. I keep returning to the question because it matters. If another neurological disease is subsequently discovered, FND can coexist with it. If symptoms persist, that can fit FND. If symptoms fluctuate, that can fit FND. If treatment works, that can support the diagnosis. If treatment fails, there can be perpetuating factors. If somebody accepts the diagnosis, wonderful. If they reject it, poor diagnostic acceptance itself can become clinically relevant. At some point I am entitled to ask what loses.
The famous low modern misdiagnosis figure is commonly traced to a 2005 systematic review of conversion symptoms and hysteria. I have already explained why I think the way that statistic is used deserves much more scrutiny in The Dark Truth Behind the 4% Misdiagnosis Rate. But even leaving that argument aside, a population-level misdiagnosis estimate cannot answer the question sitting in front of an individual patient whose condition continues to evolve. Statistics do not magically abolish red flags.
Nor does finding another disease automatically tell us whether two disorders were genuinely present all along or whether some symptoms were originally misclassified. That is precisely why the word comorbidity increasingly irritates me. Comorbidity is obviously real. But it can also become an extraordinarily convenient intellectual escape hatch. Disease B appears and instead of asking whether disease B explains symptoms previously assigned to FND, we simply write FND + B. Nothing has to die. Nothing has to have been wrong. The diagnostic ledger merely gains another line. That is not good enough.
And while all of this is being debated, my wife is getting sicker
This is the part I cannot detach myself from, and I am tired of pretending that I should. My wife is not a thought experiment. She is not a philosophical problem about dualism. She is not an interesting example for a debate about predictive processing. She is the woman I love, and she is getting sicker. We have watched the picture become more complicated rather than less. We have watched symptoms accumulate and change. We have dealt with different systems, different investigations, different specialists and different opinions. We have had explanations proposed and discarded. We have had findings that required further questions rather than fewer. And through all of this, I still cannot tell you what the final answer is. I don't know. Do you understand how desperately I would like to know?
I am not spending my time reading neurology literature because this is my fucking hobby. I did not wake up one morning and decide that what my life really needed was an intimate familiarity with Hoover's sign, diagnostic criteria, predictive processing, functional movement disorders, dysautonomia, spinal pathology, neuroimmunology and the history of hysteria. I became the "backyard neurologist" because somewhere along the way finding answers started consuming our lives. And that is perhaps what makes the ridicule piss me off most. You see an angry sceptic on the internet. I see the years that created him.
I see my wife struggling. I see unanswered questions. I see hours spent reading because another appointment ended without an explanation. I see us trying to work out which symptom belongs where, what has actually been excluded, what hasn't been investigated, what changed, what somebody might have missed and which specialist we need to try next. I see the fucking absurdity of two people without medical degrees trying to assemble a complicated medical puzzle because sitting quietly and trusting the process stopped feeling safe. And then I am expected to worry that my scepticism might hurt somebody's feelings.
No. If I make a false factual claim, challenge it. If I unfairly attack an individual, call me out. If I publish bullshit, demonstrate that it is bullshit. Those standards apply to me just as much as anybody else. But I am done apologising for asking questions, done pretending that uncertainty is disrespectful, done accepting that increasingly sophisticated terminology necessarily means increasingly certain knowledge, done treating every additional diagnosis as automatically proving comorbidity rather than sometimes demanding reconsideration, and done pretending that recognising a phenotype necessarily explains its cause. I am especially done with the idea that my anger somehow invalidates the questions that made me angry in the first place.
I wish I never had a reason to build this website
There is something people fundamentally misunderstand about FND Nope. I do not want to win. I don't want my wife to turn out to have some obscure neurological, autoimmune, structural, genetic, metabolic or autonomic disease so I can triumphantly write a post saying I fucking told you so. I would much rather discover that the people I have been arguing with were right, provided somebody can actually demonstrate it and, more importantly, help her. I don't care which hypothesis wins. I care whether my wife does.
That is why I keep returning to falsifiability. That is why I keep collecting cases. That is why I question positive signs. That is why I keep asking whether functional symptoms could sometimes be a common phenotype rather than the final explanation. That is why I care about diagnostic overshadowing. That is why I get irritated when uncertainty disappears somewhere between the scientific literature, clinical education and the patient's consultation. None of this started because I wanted a fight with FND. It started because my wife was sick, the answers were inadequate, and the questions did not go away.
And yes, that is why I am angry. I'm angry that my wife is getting sicker and we still don't know why. I'm angry that functional became a distraction. I'm angry that language can soften while assumptions remain, that observations can quietly become explanations, and that uncertainty can somehow emerge from the other end of the clinical machine looking remarkably like certainty. I'm angry that a diagnosis can become harder to dislodge as contradictory information accumulates, that scepticism can be reframed as hostility, that ridicule can replace argument, and that I have to spend so much fucking time establishing that I am even allowed to ask the question instead of somebody simply answering it.
Most of all, I am angry that I cannot simply speak my mind without somebody trying to turn the manner in which I said something into a more important subject than whether what I said was true. I am tired of sanding down every sentence, anticipating every possible offence, adding every possible qualification and making myself sound calmer than I actually am so that somebody doesn't use my tone as an excuse to ignore the substance. This is not an abstract academic disagreement to me. It is our life. I am angry because I have watched somebody I love get progressively sicker while uncertainty, opinion, terminology and competing explanations have consumed an ever larger part of that life.
And I am already angry about what comes next
I am pre-emptively angry, because I already know some cretin is going to read this entire article, encounter the word fuck, clutch their pearls and decide that my language is the important part. Somehow the swearing will become more interesting than my wife getting sicker, the unanswered questions, the diagnostic uncertainty, the problem of falsifiability, the sanitisation of terminology and everything else I have actually written. Perhaps somebody will explain that this sort of language is unhelpful, that it alienates people, that I should express myself more constructively, or that anger has no place in a serious discussion. And in doing so they will miss the fucking point spectacularly. The language is angry because I am angry. I am not going to sanitise the description of my anger in an article partly about how sanitising language can obscure what people actually mean.
But I am pre-emptively angry about something even more ridiculous: I know there is a possibility that somebody will look at the anger itself and imagine that it confirms the very kind of diagnosis I am criticising. Perhaps I am too invested. Perhaps I cannot accept the diagnosis. Perhaps I am obsessing. Perhaps our continued search for answers demonstrates some unhealthy relationship with illness. Perhaps my frustration, persistence, scepticism or refusal to stop investigating will itself become psychologically interesting. The years that produced the anger disappear, the unanswered medical questions disappear, my wife's deterioration disappears, and suddenly my reaction to all of it becomes the thing somebody wants to explain.
And that is precisely the kind of shit I am angry about. If criticism of a diagnostic framework can itself be interpreted through the assumptions surrounding that framework, the circle closes beautifully. Agreement can look like acceptance. Disagreement can look like resistance. Continuing to search can look like reinforcement of illness beliefs. Anger can become psychologically meaningful. Calm persistence can become fixation. The response to uncertainty becomes evidence while the uncertainty that produced the response quietly disappears into the background. Heads you win. Tails I have FND.
I reject the ridiculous idea that anger somehow disqualifies me from reasoning. I am perfectly capable of being furious and thinking clearly at the same time. I am perfectly capable of swearing and understanding what I am reading. I am perfectly capable of being emotionally invested in what happens to my wife without that emotional investment magically answering a neurological question. Anger is not a diagnostic test. Frustration is not a neurological sign. Scepticism is not a symptom. And refusing to quietly accept an explanation that I do not believe adequately explains what is happening is not, through some magnificent act of circular reasoning, evidence that the explanation was right all along.
So here it is without the sanitisation. I don't know what is wrong with my wife. Neither does anyone else. Until somebody does, stop dressing uncertainty up as certainty, stop treating scepticism as misconduct, stop confusing a label with an explanation, and stop fucking telling the people asking questions that the questions are the problem. They aren't. The unanswered question is. And if somebody manages to read all of this and concludes merely that I sound angry, congratulations. At least they understood one fucking thing.
I am fucking furious.