Until about two and a half years ago, I had never heard of Functional Neurological Disorder (FND). I didn’t have it. I still don’t. And somehow it rewired my whole life anyway — as a partner, step-parent and carer living beside FND in the UK.
If you are a partner, step-parent, mum, dad, or friend living beside FND, this is for you as much as it is for anyone. Because the diagnosis may not be on your notes — but the high alert, the guilt, the cancelled plans, and the quiet grief for the life you thought you were building? Those can sit on your chest too. You are not alone, and there is practical help: start with our guide for carers and family if you need a calmer map tonight.
How FND walked into my life
I wasn’t looking for it. I wasn’t in a waiting room. I wasn’t reading medical leaflets. I was running an online gift shop with a TikTok Shop — late nights, lives, customers, the usual chaos of selling things to people you’ve never met in real life.
That’s where I met Emma.
She was a customer. She joined the lives regularly. Before we were ever “us,” I was already watching something I didn’t have language for: symptoms starting, seizures beginning, a body doing things no one had prepared me for. It was the first seizure of any kind I had ever seen. I didn’t know the difference between functional seizures and epilepsy. I just knew something was happening to a woman I was starting to care about, and the world did not seem to have a simple explanation.
I’m 38. Emma is 35. She’s been living with FND for coming up to five years. I’ve been walking beside her for about half of that. When we first got together, her seizures were regular — but not daily. There was still a kind of “between.” Room to breathe. Room to pretend, some days, that life might settle into something familiar.
Then came the first convulsive seizure I was physically with her for.
I can still feel that moment in my body. The panic. The instinct to grab the phone. The absolute certainty that this was an ambulance moment — that if I didn’t act now, something unthinkable would happen. And then I looked up.
Her kids were walking around like nothing extraordinary was happening.
Cool. Ordinary. Home.
That was the jolt that rewired me: this wasn’t a one-off emergency in their eyes. This was Tuesday. This was their normal. And if I was going to love this woman properly, I had to learn a new kind of normal too — not the Hollywood version of “being strong,” but the quiet, practical, terrifying kind. If you’re early on that path, our just diagnosed / start here guide is designed for that overwhelmed first stretch.
I used to think her brain was simply “misfiring,” like epilepsy. That was the only frame I had. It took talking, reading, sitting with it at 2am, and watching the same patterns repeat before I understood how complicated FND can be. For some people, trauma sits somewhere in the history. Emma had previously been in a 17-year abusive marriage. I’m careful how I say that, because FND is not “just trauma,” and nobody’s pain should be reduced to a single cause. But it helped me make sense of something that used to feel impossible: how two people in the same household could both end up living with a condition the world still shrugs off as rare.
Rare.
I put that word in inverted commas now. Recent estimates put UK prevalence somewhere around 80,000 to 120,000 people. That’s not a handful of unfortunate cases. That’s whole streets of invisible struggle. Whole families learning to live on high alert — often without a map. For a clear, plain-English explanation you can share with family, see What is FND? and the wider symptoms overview.
The new normal nobody prepares you for
Since that first seizure beside her, I have helped Emma through literally thousands of seizures.
Thousands.
Not as a statistic. As a life. Hands out. Body already moving before the full collapse. Learning the little signals most people would miss: a change in breathing, eyes going heavy, a hand that starts to do its own thing while we’re still mid-conversation. I can be talking to one of the kids and, in the corner of my eye, the whole room tilts. High alert becomes get ready. I am already crossing the floor.
People talk about love like it’s flowers and anniversaries. Sometimes love is positioning yourself so she doesn’t hit the table. Sometimes love is knowing which side to hold. Sometimes love is staying calm for the children while your own heart is hammering so hard you can hear it in your ears.
We were told FND is not a progressive illness. I understand what clinicians mean by that. Living inside our house, it has still felt like things have got harder. Seizures are daily now — often multiple times a day. New symptoms have arrived that none of us asked for: vocal tics, motor tics, tremors, significant temporary memory loss, speech issues. The list doesn’t stay still. Just when you think you’ve learned the map, the map changes. Our Symptom Library names individual presentations calmly if you’re trying to put language to what you’re seeing.
That’s the adjustment no one warns carers about. You don’t just learn FND once. You relearn it, again and again, while still trying to be a partner, a step-parent, a human with a job and a temper and a need for sleep.
My stepdaughter is 16. I’ve watched her try to move through a school system that simply does not “get it,” including through those brutal GCSE months when everything is already loud and high-stakes. When your body might throw a seizure, a tic storm, brain fog, or a day where nothing works the way it did yesterday, “just revise” is not a plan. Schools are built for repeatable patterns and standardised processes. FND is not. That mismatch isn’t a small inconvenience. It can shape a young person’s confidence, safety, and sense of whether the adult world will ever make room for them. If you’re supporting a young person, see School & college with FND and our Teen Space.
And for the household? Plans become provisional. Spontaneity gets expensive. Conversations get interrupted by physiology. Intimacy has to make space for recovery. Fun has to be negotiated around energy and risk. You start living in two times at once: the present moment, and the moment that might be three seconds away. For partners, our page on relationships and FND names some of that quiet shift without drama.
I love Emma and my stepdaughter to pieces. That isn’t a line for the end of a story. It’s the floor everything else stands on. I will always be there. I will always catch them when they fall.
And I also need to tell the part carers often swallow.
Burnout, guilt, and the version of you that never clocks off
Being permanently on alert is exhausting.
Not “a bit tired.” Exhausted in the bone-deep way — the kind where your nervous system never fully stands down. You are charged. Wired. Ready. Even on good days, part of you is still listening for the change in breathing from the other room.
Some nights I lie awake replaying near-misses. Some mornings I wake up already scanning. There is a version of me that is always half-turned toward Emma, even when I’m laughing with the kids or trying to work. That is love. It is also labour. And labour without rest becomes burnout whether you call it that or not. Carers need support too — not only “more tips,” but recognition. Our carers hub is a place to start, and the wider support hub lists urgent and practical routes when you’re stretched thin.
The most serious episode we had, Emma stopped breathing. She had half-swallowed her tongue. I cleared her airway and gave CPR while talking a 999 operator through what FND even was — because in the middle of the worst minutes of our life, I still had to educate the emergency system. She started breathing again. I am grateful beyond language for that. It also took me days to come down. My body kept replaying it. My mind kept asking what if I hadn’t been there, what if I’d frozen, what if next time…
I don’t think people fully consider what that does to a carer. Not just the practical load — the appointments, the tracking, the explaining — but the mental load. The way it can quietly change the dynamics of a relationship. You are partner and protector. Lover and first responder. The person who wants to plan a future and the person scanning for the next fall. Both can be true. Both are heavy.
Then there’s the guilt.
Guilt for wanting an hour alone. Guilt for feeling resentful when another plan collapses. Guilt for laughing on a good day and then wondering if you’re allowed. Guilt for not being calm enough, patient enough, informed enough. Guilt for the flash of “I didn’t sign up for this” that can arrive in the middle of a hard night — even when you would still choose them a thousand times over.
If that sounds familiar, I need you to hear this: those feelings do not mean you are a bad carer. They mean you are a human being inside a relentless situation. Love and exhaustion can share a house. Commitment and grief for the old “easy” life can sit at the same table. Wanting rest is not the same as wanting out.
I am still bad at looking after myself. I will say that plainly. But I have learned the hard way that if I run myself into the ground, everyone loses. An emptied-out carer cannot keep catching people forever.
What actually helps (when nothing feels simple)
I built SeizeControl because I needed a way to record what the hell was going on.
Not for fun. Not for a startup story. Because when a doctor finally has ten minutes for you, your brain is soup, and you cannot reliably reconstruct the last fortnight of seizures, sleep, pain, and “was that a new symptom or just a bad day?” Memory under stress is not a clinical tool. A log is. SeizeControl is free, private seizure and symptom tracking with appointment-ready summaries — built from this exact problem.
Being able to see patterns — symptoms rising, seizures clustering, the shape of a week — was massively helpful. When we added pain, sleep and period tracking, things that used to feel random started to have edges. For Emma, seizures increase quite a bit around ovulation. Knowing that doesn’t cure anything. But it means we can plan: not stacking hard days on top of a known storm window; not pretending the calendar is neutral when her body clearly isn’t. If benefits evidence is part of your load, PIP Assist (inside SeizeControl) can help organise records around PIP-style questions.
FND is still unpredictable. Mapping triggers doesn’t make life fair. It can make life a little more navigable. And there is something deeper than spreadsheets in it too: Emma and my stepdaughter knowing they are safe. Knowing that if something happens, I know what to do — and they trust that I will do it. That trust is its own kind of medicine. Not a cure. A holding. Before clinic days, our free appointment pack helps turn chaos into a short, clear sheet.
The other thing that helps — and again, I am still learning this — is carving out time that is mine.
A walk. The gym. Anything that lets my system drop out of high alert for long enough to remember I am a person, not only a response unit. Without that, burnout stops being a risk and becomes the weather system you live under. Energy management tools like our pacing guide help some households put language around that too.
As Emma’s symptoms progressed and the “not every day” became something heavier, we reached out for support — because she hadn’t really had any. That’s when the second shock landed: how little help there actually is. How many professionals still look blank when you say the letters F-N-D. If you have to explain your condition to your own doctor, what hope have you got with a teacher, a boss, a paramedic on a bad night, a well-meaning relative who thinks you’re “overreacting”?
I got angry in a useful way.
I didn’t want another webpage that listed symptoms and left people alone with the fear. I wanted something you could actually use at 3am — when the house is quiet, someone’s recovering on the sofa, and you’re trying to remember whether this pattern is new or not. That’s why FND Connect and SeizeControl exist. What started as tools to make my life as a carer more survivable has grown into a place with real information, practical free tools, and a community — 400+ people using the website, 120+ in our Discord — who know this isn’t theoretical.
This story isn’t a product pitch. It’s the reason the product had to be built.
If you are a carer reading this at 2am
If you’ve just watched your partner’s first FND seizure: it’s terrifying. I get it. Your body will scream do something. Mine did.
But try not to make the moment only about your fear. Imagine what it felt like for them. They may have just lost complete control of their body, with no idea when control would return. They may be in excruciating pain for reasons that make no sense from the outside. For some people, that seizure is the point where the old life feels gone, and the new reality lands like a weight on the chest.
Be supportive. Be gentle. Be practical. Lights low. Noise low. Stimulation down. Stay with them in a way that says: you are not alone in this, and you are still you. For more on functional seizures and safety planning, see our functional seizures hub and SeizeControl for ongoing tracking after the crisis passes.
If you’re a parent or step-parent heading into exam season with FND in the house: plan early. Talk to the school and the exam board before crisis mode. Ask about smaller or private rooms, extra breaks, a scribe if hands cramp or seize, a reader if brain fog is thick. Having a clear plan agreed in advance doesn’t remove FND. It removes some of the avoidable stress layered on top of it. Young people with FND deserve access arrangements that match reality, not a system that only understands “always” and “never.” Start with School & college and, for teens themselves, Teen Space.
If you’re a paramedic, nurse or doctor meeting FND for the first time: FND will go against a lot of what your training prepared you for. There isn’t one neat test. There isn’t one standard script of symptoms. It is varied, individual, and easy to dismiss if you only trust what shows on a scan. Please learn it anyway. FND is now one of the commonest diagnoses in neurology. The people in front of you are not rare curiosities. They are someone’s partner, someone’s child, someone trying to stay upright in a body that will not always cooperate. Curiosity and respect save more than pride does. Clinicians can find leaflets and pathways via our clinicians area and GP leaflets.
And to other carers — the ones who catch, hold, explain, cancel, rebook, stay, and still feel like they’re not doing enough:
You can love someone with your whole chest and still be exhausted. You can be the person who catches them when they fall and still need someone to ask if you have eaten. You can feel guilty for wanting space and still be devoted. You can grieve the old life and fight for the new one at the same time.
You can build tools, systems, communities, and better days — and still have nights that take you days to come down from.
If you love someone with FND, you will learn a version of courage that doesn’t look like bravery from the outside. It looks like making tea after a seizure. It looks like cancelling plans without bitterness. It looks like going again tomorrow. It looks like putting your own feet under you so you can keep standing beside them.
I didn’t have FND.
It rewired my whole life anyway.
And I would still choose them. Every time. With clearer eyes, better tools, and a harder-won understanding of what love looks like when the ground moves — and when you are allowed to be tired on that ground too.
Where to go next on FND Connect
If anything in this story lands for you, these free pages and tools are the ones I wish we’d had sooner:
- SeizeControl — private seizure and symptom tracking (the tool I built because clinic memory fails under stress)
- What is FND? — a clear explanation you can share with family and friends
- For carers & family — support when you live beside FND every day
- Functional seizures — calmer information after a frightening episode
- School & college — exams, adjustments and systems that don’t “get” FND
- Appointment pack — prepare for GP or hospital appointments
- All free tools — tracking, benefits, travel and daily life
- Support hub — practical help and urgent routes
- More FND Stories — other real voices from the community
Thank you for reading
Matthew
