Imagine waking up tomorrow morning, and opening your mouth to say good morning to your partner, but not a sound comes out. Or it comes out in a language you’ve never learnt. Or your jaw locks. And then you realise you can’t even swallow.
Imagine that, being trapped in your head and aware of your body, but not being able to get the two of them to connect.
Imagine suddenly being unable to move your limbs the way you’ve always done. To not be able to lift your arm to bring food to your mouth, or to move your leg to take a simple step forward. To not be able to stop your cheek from randomly twitching or to still a sudden tremor in your hand.
Imagine going to a supermarket, say, and feeling ok one minute, and the next minute the floor disappears from beneath you and you simply fall, unable to control your body or get up. The eyes of the people around you tell you enough – they think you’re drunk or off your face. Some people even step around you.
Imagine you played your guitar this afternoon but later this evening your fingers will claw into a ball, and it’ll be weeks before you’ll manage to unclench them.
Imagine your body going into a spasming seizure – or a complete dissociative seizure where you just clock out for a good while – with absolutely no warning and seemingly no reason. In the weeks following one side of your body is completely paralysed and the other side is numb and tingling. The pain in your back is almost unbearable.
And then imagine being told by one health care provider after the other that it’s all in your head.
I can’t imagine any of these things happening to me. But there’s plenty who can. These sorts of symptoms are suffered by many people who have a condition called Functional Neurological Disorder or FND. Every year 4-12 people out of every 100,000 are diagnosed with it worldwide.
More than 100,000 people in the UK have FND. An estimated 500,000 to a million people in the United States. Australia hasn’t published a specific number but google tells me 5-15% of all people who go to an emergency department there have FND. It’s quite huge.
FND is the cause of people presenting multiple times to an emergency department, often in an ambulance, often to be sent home with no diagnosis, no treatment, no hope, and no further help whatsoever. And it’s the second most common reason people present to a neurologist. Second only after migraines.
And yet, have you ever heard of it?
I hadn’t, until a couple of years ago.
I think most of us have heard of other neurological conditions that affect movement, like Parkinson’s, Motor Neurone Disease, Cerebral Palsy and Muscular Dystrophy. Probably many of us know someone who has one of those disabilities.
But FND? Since it first barrelled into my world in a big way, I’ve asked many people if they’ve ever heard of it and I’ve yet to come across anyone that has.
So I want to try to spread some awareness 😌.
Let me introduce you to Steve’s daughter, Kirsty (she’s given me the ok to share some of her story).
Kirsty is an accomplished and successful musician and music teacher. In 2021 she joined the British Army as an opera singer for the military band. While going through basic training – hardcore running with a heavy kit – she fell and seriously injured her back. She was hospitalised for months in a pandemic world where diagnosis and treatment were far below par.
Since then her own physical and emotional world has tumbled into the most challenging rollercoaster journey, one you wouldn’t wish on your worst enemy. It would take a book to do justice to her story of the last few years.
One confusing chapter after another saw her regain strength and lose it, suffer through relentless pain and rebuild her confidence again only to lose it again, to losing the function in her legs and losing her speech. In the early days countless visits to the ED with horridly scary and confusing seizures. For a while, each seizure resulted in more stroke-like symptoms and losses of movement and function which took enormous effort to overcome.
It’s been an exhausting journey for her to say the least.
And for those of us who love her, it’s also been a massive learning curve, because of the poorly understood nature of FND, because of its complexity and because of the difficult journey to diagnosis.
Kirsty has had to give up everything she was – mentally, physically, professionally, socially, financially and emotionally – while she battles this debilitating condition.
A condition that for her took over 2 years to be diagnosed. A condition that has no definitive treatment or cure. A condition that isn’t caused by any ‘structural’ change in the body or brain, is not degenerative and can not be detected on any medical tests.
If you have FND, in a nutshell, your brain is 100%. And your body is anatomically 100%. But for inexplicable reasons – or often associated with or following a specific physical, emotional or mental trauma – the neurons that connect your brain to your body misfire. It’s a dysfunction of the nervous system not detectable by scans.
Symptoms can be sudden, progressive or fluctuating and include movement problems like weakness, paralysis, tremors or seizures. Sensory problems like numbness, or vision and hearing problems. It can also affect cognitive function, and cause extreme fatigue, speech problems and pain. Like anything in life, FND symptoms fall on a spectrum.
FND is a relatively new term for the condition. For a while it was called Conversion Disorder, before that as a nervous illness, and many years before that as hysteria, with various aetiologies including trauma, problems with the reproductive system or hormones, painful memories and supernatural causes.
I find it frustrating and tragic that despite significant advancements in modern science and modern medicine, despite increasing knowledge of the brain and neurons and their synapses, despite advancements in psychology and physiotherapy and understandings about the subconscious, and despite the continuing work in trauma and mental health care, FND is still very poorly understood. Despite increasing knowledge in recent decades, the understanding of FND is not as advanced as it is for other neurological disorders.
A sad consequence of its complexity and the lack of knowledge both in the healthcare professions and in the general community is that many people who get FND aren’t taken seriously.
Especially when symptoms first start, or even when someone has a severe seizure or is paralysed, many patients are told it’s all in their head.
This, for someone who’s in severe pain and confused and confronted by what their body is suddenly doing, is a hard pill to swallow.
If they get a diagnosis, it can be a relief, while of course still a blow. If not diagnosed, it leaves a person confused. And whether formally diagnosed or not, patients are often sent home with only an internet link to research it further by themselves. Some are put on a long waiting list to be seen by a neurologist, despite the fact that early treatment has proven to have better outcomes.
Most people who have FND fall through the large cracks of our modern medical systems and are left with no choice but to flounder their way through. Usually without much, if any, professional help.
FND most commonly strikes fully functional young people, often women who, like Kirsty, are high achievers and successful in their careers or studies. So naturally, whether it happens suddenly or it’s a slow, confusing onset, FND has a devastating effect on their mental wellbeing resulting in grief, anxiety and depression, which in turn — and the seriousness of this can not be overstated — worsen the symptoms. It’s a nightmare ‘catch22’ of torture where your body and brain turn against you no matter what you do.
If it isn’t cruel enough that your own nervous system hijacks your life, one of the hardest parts of many people’s FND journey is the confusion and lack of awareness within the medical industry itself. Even though it’s a relatively common disability, there are still way too many doctors, nurses and paramedics that don’t understand it. And because medical tests all come back as normal, many healthcare professionals accuse patients of making it all up. For attention. Why on earth someone would fake seizures and stroke-like symptoms and end up in a wheelchair, or blind — in order to gain attention — is beyond me. But some believe it might be a subconscious cry for help or just a sheer collapse when trauma and struggle become all too much for the person’s neurological system to bear. The symptoms are real, they can be a massive wake up call, but tragically they usually don’t go away.
An analogy that’s often used to describe FND is that of a TV screen where the audio visual in and out cables have been put into the wrong sockets. As simple as that. But nobody can put them back correctly.
Kirsty is still in a wheelchair and hasn’t been able to speak in over a year, and she understandably has lots of very dark moments and lost days 😢. She’s lost family and friends due to people just not getting it, and not having the bandwidth or patience to find the compassion and respect we all damn well deserve, let alone someone with FND.
Every day Kirsty inspires me and her father. Thank god for the internet which allows him to stay in constant contact with her. We often have video calls where currently our conversations consist of Kirsty texting to my phone while we do the video on our laptop.
Steve also grieves the loss, movement, ambitions and potential of the life Kirsty used to have, but that doesn’t take away from our absolute awe and respect for Kirsty herself. I don’t know how I’d cope if FND chose me. I suspect I’d cave 😢.
Kirsty is a superstar 💪 and has weathered the unbelievably woeful NHS system in the UK (with an average wait of 65 weeks to see a neurologist) and its complete lack of effective integrated therapeutic care, and she’s now working her butt off to recreate her life. She’s gone back to university to study her Masters and she’s learnt BSL (British Sign Language). The other day she gave a presentation to her uni class, in BSL and translated by a friend, about the utmost preciousness of time, second chances, and how she’s choosing to look at her FND as a gift. This month she’s opened a brand new online business selling her own bespoke cottage craft creations. Check it out at The Little Craft Haus on instagram 🙂
We hope and pray that one day Kirsty will walk and talk again, we have hope and faith that she will, but we support and love her wholeheartedly no matter how her life and health manifests, through all the ups and downs that we’ll all face. She’s one hell of a brave, wise, loving, funny and talented young lady.
A couple of years ago I joined an FND support group on Facebook. So many people suffer from this condition without recognition, without belief, without help and support groups connect them to people who can relate. Oftentimes their lives are shattered and shrink to within the four walls of their homes, because they’re scared they’ll have a seizure when they go out. In this Facebook group there’s a man who’s just started sharing his poetry. He posted this poem the other day which inspired me to write this blog. All of his poems have moved me deeply, as they are in essence also Kirsty’s story.
A Letter to the Doctor Who Didn’t Believe Me
You sat there, white coat and clipboard,
while I sat there breaking.
Not visibly, of course –
that would’ve made it easier for you,
wouldn’t it?
But I was breaking
just the same.
I told you my legs felt like lead,
that I fall without warning,
that my hands shake,
that my face moves without permission,
that sometimes I go somewhere
and don’t even know I’ve left.
You asked if I was stressed.
If I’d tried breathing exercises.
If maybe it was “in my head.”
It is in my head.
That much you got right –
it’s in my brain, misfiring, rewiring,
failing to speak the language
my body once knew fluently.
But it’s not imagined.
It’s not made up.
And I am not your curious little case
to be dismissed and forgotten
because you couldn’t fit me neatly
into your textbooks.
You looked at me like I was lying.
Or wasting your time.
You made me doubt
what I was already scared to believe.
You made me feel
ashamed
of being unwell.
Do you know how dangerous that is?
To leave someone drowning
and hand them a blanket?
But I want you to know something.
I’ve found people who see me now.
Who believe me.
Who understand that FND is real,
and that surviving it
is a full-time job I didn’t apply for
but refuse to quit.
Your silence didn’t silence me.
Your doubt didn’t stop me.
Your ignorance only made me louder.
And now –
I write this not in anger,
but in power.
Because I am still here.
Still shaking,
still falling,
still getting back up.
And every time I do –
I prove you wrong
without saying a word.
by Bal Rajah, The Twitchy Poet.
My hope with this blog is to help people become aware of this condition and for everyone to find compassion and respect for anyone who’s struggling with it. There’s some research that shows FND has become more common in recent years, which is perhaps not surprising given our world today and this condition’s association with psychological and social factors.
And for anyone interested in finding out more about FND, there are some good books out there but I’d highly recommend “It’s All In Your Head” by London neurologist Suzanne O’Sullivan. It’s an utterly fascinating read. Dr O’Sullivan titled it that way in an ironic sense, since it’s very hard for patients with supposedly psychosomatic illnesses like FND to be repeatedly told by medical professionals and others that their symptoms are all in their head, when their symptoms are indeed excruciatingly real.
Also check out https://fndhope.org/
Thank you so much for reading this 🙇. If you have FND, or know someone who does, I’d love to connect 🤲.
