What nobody tells you about FND: The silence following diagnosis

When you’re diagnosed with MS, Epilepsy, Parkinson’s, or any other serious and life-altering illness, the medical system rallies around you. There are follow-up appointments, specialists, treatment plans, and a clear sense that your suffering matters.

After months or even years of frightening, disabling symptoms, finally hearing a diagnosis feels like the end of a nightmare. You exhale in relief, hoping for treatment and a way to reclaim control over your life.

The short-lived relief of a (FND) diagnosis – and what comes next

Picture this: You’ve been experiencing terrifying symptoms. Maybe you’ve had seizures, or your speech suddenly disappears, or maybe half of your body stops working. You might have tremors, tics, dizziness, or pain that comes and goes without a pattern. Your body no longer does what you ask it to, and every day feels like walking through fog on legs that may or may not cooperate.

At first, there is help. You’re sent for tests, MRIs, nerve studies, blood work, and lumbar punctures. You’re examined by every specialist imaginable. The hospital becomes a second home. Every time a test comes back normal, the confusion deepens. How can something this catastrophic be invisible?

Eventually, you may find yourself sitting opposite a doctor who looks at you like a puzzle they’ve already stopped trying to solve. They might say, “Your tests are fine. There’s nothing wrong with your brain or nerves." They pause before adding, “It’s functional.”

Then comes the explanation that makes you want to scream. “Think of your brain like a computer. The hardware is fine, but the software has a glitch.” You ask what that means. They can’t really tell you. You ask what to do next. They don’t always know. Then, the conversation turns toward your mind. “Have you been stressed? Any past trauma?”

You may leave the appointment with a website scribbled on a scrap of paper and the sinking realisation that you’ve just been quietly discharged from care and any hope for help. That’s where the silence begins.

A history of misunderstanding and medical invalidation

Many years ago, this condition was called hysteria. The term dates back to ancient Egypt and Greece, where women’s symptoms were blamed on a ‘wandering uterus’. Centuries later, Freud and Charcot revived the idea in the 19th century, claiming physical symptoms came from repressed emotion. The very word “hysteria” comes from the Greek hystera, meaning uterus, reflecting the sexist assumptions that shaped early medicine and can occasionally still be observed today.

Later in 1980, the APA (American Psychology Association) changed it to “conversion disorder,” based on Freud’s idea that emotional conflict could be “converted” into physical symptoms. For over a century, this theory dominated. Even when the name changed again, officially becoming Functional Neurological Disorder in 2013, the attitudes did not evolve nearly as fast.

So what is FND?

FND affects how the brain sends and receives signals to the body, disrupting movement, sensation, and consciousness. It’s recognised as a genuine neurological disorder, yet many people experience being told ‘it’s all in your head’. It is one of the most common diagnoses made by neurologists, accounting for up to 6% of outpatient referrals.

Research (Bennett, 2021) shows that the quality of life for people with FND is as poor as, or worse than, those living with Epilepsy or MS. Despite this, many are discharged without treatment, rehabilitation, or even basic follow-up.

The no man's land between neurology and psychiatry

The silence is more than a lack of care. It’s the sound of doors closing on the hope you had for answers. Your symptoms sit in an uncomfortable space between neurology and psychiatry. The neurologist might say it’s not their area anymore. The psychiatrist might say they can’t treat physical symptoms. Your GP shrugs and suggests “managing stress.” The healthcare net you thought would hold you simply isn’t there.

And it’s not just neglect. Increasingly, people are being given an FND diagnosis after the briefest of assessments. It has become, for some clinicians, a convenient shortcut. Because FND is no longer a diagnosis of exclusion, some clinicians act as if exclusion isn’t necessary. It’s too often slapped on to get patients discharged. ‘It’s not a textbook presentation, so it must be functional.’ That thinking has left many people misdiagnosed or dismissed after brief consultations and no tests.

This isn’t to say that FND isn’t real. It absolutely is. This isn’t about denying the diagnosis itself but about calling out how carelessly it is sometimes used. For those who genuinely live with FND, the consequences of that carelessness are devastating. The overuse of the diagnosis doesn’t just harm the people mislabelled with it, but everyone who actually has it, because it feeds the idea that FND isn’t serious, that it’s a vague catch-all, that it’s something people can “just get over.”

FND, medical gaslighting, and the trauma of not being believed

Imagine being suddenly paralysed, blind or unable to speak, terrified that something is seriously wrong, and being met with suspicion and dismissal instead of care. Imagine being told your suffering is psychological when you are struggling with real physical symptoms.

The humiliation, the fear, the gaslighting, the sheer exhaustion of having to prove your own pain is real, and it changes you. It breeds shame and self-doubt. People start to apologise for being ill, to minimise symptoms, to say, ‘I’m sorry, I know it’s probably just stress.’

This silence becomes trauma in itself. Not the kind of trauma that fits neatly into therapy manuals, but the kind that seeps into your sense of safety and self-worth. The body that once carried you suddenly betrays you. The system that was meant to help you abandons you. And the world expects you to just get on with it.

FND forces you to grieve the person you were before. Your body no longer moves or feels the way it used to, and you’re navigating an unfamiliar life filled with uncertainty and loss. That grief often goes unnoticed because everyone just hears that all your tests came back normal.

Rebuilding trust and starting to heal through therapy

Therapy cannot fix medical neglect, but it can help you survive it. It’s often the first space where you are believed without having to convince anyone, and can finally process the anger, shame, and confusion of being dismissed. CBT can help manage symptoms by retraining attention and reducing stress responses, but it cannot reach the deeper layers of trauma or restore the trust in your body that years of dismissal have shattered.

As an integrative psychotherapist who works specifically with clients with FND, I often hear the same things: “I feel like I’ve been blamed for my illness.” Or “I feel ashamed of this diagnosis because people don’t take me seriously. Anytime I have any new symptom, even unrelated to FND, it gets blamed on it anyway and doesn't even get investigated.”
Many describe the anger that no one warned them how lonely the diagnosis would be, or how much guilt they carry for something completely outside their control.

Clients often ask, "Can therapy fix FND?"

It's a heartbreaking question with no easy answer. Therapy can’t fix FND, but it can help you live with it in a way that feels less lonely, less shameful, and more in your control. Integrative therapy allows space for that grief and anger, recognising that healing is less about ‘fixing’ symptoms and more about reclaiming self-worth and hope.

The most helpful therapeutic work happens when both realities are acknowledged. FND is a neurological condition that can be worsened by stress,  but not caused by it. Emotional distress can interact with physical symptoms, but that does not make those symptoms imaginary. The body and mind communicate, but they are not the same thing.

Therapy, when done right, becomes about reclaiming your story from the system that silenced it. It’s about understanding that you did not cause this, that your suffering is valid, and that you deserve real care, both medical and emotional.

The harm caused by the lack of aftercare following an FND diagnosis

The truth is, silence and dismissal kill hope, trust, and motivation. The silence after an FND diagnosis is not just about missing appointments or a lack of services. It’s the quiet realisation that the medical world has moved on and left you behind. It’s the messages that go unanswered, the blank looks, the notes that say “functional” instead of “person with real, debilitating symptoms.”

Yet within that silence, people find each other. Support groups and communities saying ‘you’re not crazy’ become lifelines. Sometimes therapy becomes a bridge back to yourself, a place to be angry, sad, hopeful, and human.

But still, we have to wonder – why are people who are experiencing real, debilitating symptoms left with no aftercare in some cases, with no support except a piece of paper with a website on, and a half shrug that tells the patient exactly how much clinicians care?

There are small signs of progress; NICE has begun to recognise the seriousness of FND and is slowly developing clearer care pathways, encouraging multidisciplinary rehabilitation and joined-up support between neurology and mental health. 

If you live with FND, you are not alone. You deserve proper investigation, genuine care, and compassionate understanding. You deserve clinicians who listen, not ones who hand you a leaflet and send you away. You deserve a space, whether in therapy or beyond, where your voice is finally heard and you don’t have to fight to be believed.

The silence after diagnosis is not inevitable, but rather the result of a system that needs to do better. And until it does, the rest of us will keep talking about it. Because silence helps no one.

References

Aybek, S. and Perez, D.L.  (2022) Diagnosis and management of functional neurological disorder. BMJ 24.

Bennett, K., Diamond, C., Hoeritzauer, I.,  et al.  (2021) A practical review of functional neurological disorder (FND) for the general physician. Clinical Medicine 21(1), 28-36.

Espay, A.J., Aybek, S., Carson, A.,  et al.  (2018) Current concepts in diagnosis and treatment of functional neurological disorders. JAMA Neurology 75(9), 1132-1141.

Feinstein A. (2011). Conversion disorder: advances in our understanding. CMAJ : Canadian Medical Association journal = journal de l'Association medicale canadienne, 183(8), 915–920. https://doi.org/10.1503/cmaj.110490

FND Action  (2022) Information and guidance for medical professionals. A summary of Functional Neurological Disorder. FND Action. http://www.fndaction.org.uk 

Gilmour, G.S., Nielsen, G., Teodoro, T.,  et al.  (2020) Management of functional neurological disorder. Journal of Neurology 267(7), 2164-2172.

Hallett, M., Aybek, S., Dworetzky, B. A., McWhirter, L., Staab, J. P., & Stone, J. (2022). Functional neurological disorder: new subtypes and shared mechanisms. The Lancet. Neurology, 21(6), 537–550. https://doi.org/10.1016/S1474-4422(21)00422-1
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