Hello.
My name is Katy
And I have Functional Neurological Disorder (FND*)
Fun-what?
No. Not fun, I assure you.
It is thoroughly boring and exhausting, not least having to explain it.
But here goes.
I’m gonna tell you a bit of my story of FND which is, of course, specific to me but similar to so many people’s experience the world over. (For actual science, see the links below)
In one week in February 2017, I collapsed at work, experienced episodes of temporary paralysis of my legs and increasingly weird walking problems as if I didn’t own my legs. I had 3 trips to A&E by ambulance and on the third visit was admitted overnight. This turned in to 9 days of diagnostic tests, and 8 nights of little or no sleep.
Every test came back normal. Every single test.
And still I couldn’t walk.
I kept collapsing when I tried.
6 days in, the consultant neurologist said to me: “We could do 400 tests and they’d all come back clear.”
I was given a diagnosis of Functional Neurological Disorder and a link to a website.
I cried for about 5 hours.
The next day, my legs seemed absolutely fine. I was able to walk around the ward and it was as if the whole episode had never happened.
What the…! Had I made it up? Had I played some trick on myself? What must the nurses think? Do they think I’m a fraud? Have I just been wasting their time and resources for the last week? [NB: No, I hadn’t been making it up and yes, it is real.]
So what exactly is FND?
Here is a very short video from leading FND expert, Professor Jon Stone to explain:
In short, if you imagine the brain and the nervous system as a computer, then FND is a software problem rather than a hardware problem. It is a problem with signals/functioning rather than structural damage to the nervous system.
Here is my hand-drawn interpretation of that concept (click on image):
To understand way FND affects my legs, Professor Stone explains:
“For people that know about phantom limb syndrome, functional leg paralysis from FND is the opposite problem. In Phantom Limb the brain thinks the leg is still there although it isn’t. In FND the brain thinks the leg isn’t there, even though it is.”
A few days after being diagnosed with FND, I returned home, discharged from neurology but referred for outpatient psychiatric support (given my history of mental health difficulties which had been exacerbated by hospitalisation). Through this, I benefitted from 2 years of psychotherapy which was life-changing and has been the most helpful treatment I’ve received since diagnosis.
So, are my legs ok now? No. Last week, I was barely able to walk but then today I woke up and they’re mostly fine again and you wouldn’t know that there was a problem. Next week, who knows! And that’s the thing with FND. Symptoms can be negligible one day and crippling the next. And it’s not just my legs. My symptoms can include extreme exhaustion and fatigue, word-finding problems, numbness, sensory and other issues too. FND affects different people differently in nearly every way imaginable (see links below).
I’m yet to master the act of pacing myself as so many people suggest: I tend to go full pelt when I feel able and then regret it the next day.
I liken it to borrowing money from a loan shark - I’ll take out £20 one day and have to pay £500 back the next!
I’m still learning how to manage it. But it’s ok. I’m ok.
I wrote my new song ‘Darling, Dear Darling’ about my experience of being in hospital prior to receiving the FND diagnosis. Here’s a little blog specifically about that songwriting process
One of the reasons for releasing the song (and writing this blog) is to raise a little bit of awareness around FND and reduce some of the stigma around it.
'Darling, dear darling' is out digitally this Friday 12th February 2021. You can pre-save the song on Spotify here: https://show.co/aGXAjIJ
My home-made video for the song premieres tomorrow morning.
For more information on Functional Neurological Disorders, see the links below:
