It’s not an accident that we have chosen to publish this article on FND Awareness Day, and this piece is going to focus on exploring the condition with which I live and hopefully remove some stigma and unfounded assumption which surrounds it.
So what is FND?
Functional Neurological Disorders (which I am shortening to FND for this article!) are illnesses with a collection of symptoms caused by the improper function of a person’s neurological system. Before I get into what FND is I want to talk a bit about what FND most definitely is not.
It’s NOT Imagined, it’s a real issue
Often when getting into the discussion of FND the very first reaction on hearing a description of the symptoms and potential causes is to assume that its a purely psychological condition. It’s unbelievably important to clarify that this is not the case, and to avoid implying that it is. The assumption or worse yet assertion that FND is purely a mental condition has led to many people who suffer from this illness feeling isolated, disregarded and immensely pressured to “get their heads sorted out and be better”. While FND has correlation to, and can be affected by mental state, the symptoms are a physiological reaction, the person’s body is not behaving properly and you can’t just think your way out of it. So please if you have one takeaway from this article, let it be that you understand the difference and advocate for those who suffer from FND to have the condition properly recognised.
Ok so back to what FND is. Well it’s a lot of things, the symptoms of FND can vary hugely from one case to the next, the only unifying factor is the innate link to the dysfunction of the body’s neural pathways. Perhaps I should start by describing what FND is to me, after all a reference point is always helpful.
My particular flavour of FND comes in the form of “periodic total body paralysis” multiple times a day I become unable to move, at all, for an indeterminate period of time. This entirely sucks. I will talk more about that elsewhere though, my personal experiences are purely anecdotal here. What this does allow me to do is to properly frame what happens to me, and then to talk about the how/why.
So what actually happens to me when I experience an episode? Put as simply as I can my brain misfires and causes a signal to be sent to my body which results in an inability to move, just how this all works is a little beyond me, as well read as I may be I am not a neurologist, and indeed many more qualified experts battle to find the right language to express FND clearly. The physiological effect is much easier to address in an understandable way, for periods of time I am rendered entirely helpless. Despite my being fully cognitively aware and able to process the world around me, I am incapable of physical action, I can want to move, but my body will not respond.
So with a little personal context in place, I’ll try and give some more information on FND in general.
What causes it
The short if less than helpful answer is probably many things. There is a correlation between FND and extreme trauma, but many patients with FND have never experienced any such event. A universal cause is as hard to find as a universal set of symptoms, and also rather pointless to look for.
Big statement there Bear!
Yes I concede it is, but one I am pretty comfortable making.. Rather than advocate a deep and time consuming soul search for a cause, it is rather more effective to approach FND from the position of acceptance and adaptation. As an analogy lets take the concept of a missing limb, say a leg. While it is probably pretty easy to identify the cause of the legs loss, that knowledge cannot alter the consequences of the loss, you are still one limb down and you will have to alter your life to compensate.
In the same vein the symptoms of FND are not generally cured or changed through the knowledge of the cause, for whatever reason the nervous system has been affected and developed a response (or lack of response) which remains reasonably constant. So the best method of “treatment” for FND is often help in learning to live with your “new normal”. This is not to say that treatments are not viable, indeed many experts are working hard to find ways to improve or mitigate people’s individual symptoms. But there is not always a way to remove the challenges which those who suffer from FND must live with day to day.
Living with FND
Alright back to the personal perspective. What has this illness meant for me personally? Well it’s hard to avoid the fact that there is clearly a huge impact on my life, but I suspect I am more defined by my journey than my illness. For a good few years I had no name for what I had, in fact I was something of a medical mystery. Back in 2015 when I had my first episode it was assumed to be an aberration, and one unlikely to repeat. When later that year they started to happen more regularly things got interesting very fast. I have been bounced from GP to Neurologist and from city to city on my way to a diagnosis. I have been to see doctors here in York, in London and eventually landed with my amazing support team at Sheffield’s Royal Hallamshire Hospital.
I have had to accept that my current state is likely to be the “norm” for the rest of my life, I will always suffer periodic paralysis and it will impact my world. There are lots of sides to this stuff, so I will try to go through them in some form of order.
A note: The following statements are not intended to be self serving or dramatic. I have however kept them quite personal in form and they may make for uncomfortable reading.
“I am completely helpless for extended periods.”
I want to focus on the word helpless here. For hours a day I cannot account for my own basic needs. Thankfully nowadays I am immensely well looked after, but I have been trapped in a bath for 2 hours while the water goes cold, I have been laid out in my own urine, and yes it is as bad as it sounds.
“Yes it hurts.”
Some people have asked me about the amount of pain medication I take, and I fully understand why, it’s odd to imagine that being still can hurt. But here’s the thing, it does. Try it, keep absolutely still for twenty minutes and see how much you ache when you move, remember you can’t cheat, if you get cramp, live with it, if you start to have pins and needles, live with it. You can’t move. I think this little exercise may prove eye opening.
“I have very little privacy”
Imagine that you cannot go anywhere unaccompanied. Imagine that even when you are on the toilet, the door can’t be locked. Imagine that you need to be connected to the internet all the time.
Welcome to my world. These statements are truisms for me, they are my day to day life. I have an amazing PA called Heather who follows me about 10-4 weekdays, like a cross between Mary Poppins and The Bodyguard, when she is not with me my wife Emily is. Without this support and constant supervision I would be in real danger, that’s not drama, that’s just life.
“Life is not cheap.”
Disability often comes with some extra costs, mine certainly does. I have a PA who works 30 hours a week, she needs to be paid, I am grateful that our local social services have authorised this, as without her not only would my life be compromised, but my wife would have next to no freedom from caring for me. That one makes some sense to most people, though adding up the cost can certainly make eyes water.
I have to live in a bungalow. This also makes sense, stairs + paralysis = not great. Though oddly my benefits payment only accounts for the cost of a one bed flat. Thankfully a housing charity has us covered, again we dropped lucky, many are not so fortunate. These things are all mostly understandable to the majority of people, though they may balk at the potential cost in “their taxes” but some things aren’t so clear…
I have had people look at me with an incredulous face when I explain that I am long term diabsled (most of the time I do look pretty “normal”) and on benefits and they sometimes note that I am wearing an expensive smart watch, that my house contains a voice assistant in every room, that we pay for high speed internet and huge data packages on our mobile phones. Sounds like luxury right? Nope. Sorry to disabuse you of the notion but these devices are critical to day to day life.
While in theory I could live without them, I’m not sure I’d call it living. This technology allows me some privacy with the safe knowledge that I can call for help easily. Money wise these devices have been paid for mostly by gifts from friends and family, to be clear, no our benefits would not pay for all this. Oh and yes I could get help through the state system, indeed I have tried, but the waiting list is immense and the end technology is way behind the curve in its level of advancement and usability.
So next time you see a disabled person with some expensive tech, and start to wonder just how much benefit they must get. Maybe take a moment and think about why they may need that tech, or even strike up a conversation and ask!
“I can’t drive.”
Suffering from unpredictable paralysis means that I had to surrender my driving license, I should hope the reasons are pretty obvious, and I can hardly disagree. But this sucks, hard. I got my license as a teen and I have been fortunate enough to have always owned a car. Learning to adjust to not being able to reach for my car keys when I want to go somewhere has been hard. Oh and then there’s the risk of having a paralysis episode on public transport and then having to explain that you have no idea when asked “how long will it last?”.
“I cant work… conventionally.”
This one is perhaps the largest issue and the most complex one, so it will get the most words.
When I first started living with what was still undiagnosed FND, I tried to work in a normal fashion, against my doctors advice I might add. I took a retail management job connected to coffee of course! Despite my illness I attempted to “power through” indeed an average day became coming out of an overnight episode or two, grabbing a shower, heading into work and then if an episode hit in the workday I would just nip up to the staff area (stairs, not good by the way) and ride it out on the sofa, then come down to finish a shift. Needless to say this didn’t end well, in the end and after some incredible levels of support from my employer we had to agree to part ways, for both their and my sake.
I cannot work a fixed schedule and hours due to the unpredictability of my episodes and that makes me a non starter for most employers, and I get why. So I made my benefit claims (this experience is an article in itself, let’s just say it wasn’t easy and it took a very real toll on my mental health), and tried to get used to being at home, all the while still not knowing what was actually wrong with me.
So confession time, I don’t do well at doing nothing, despite my nickname I am not inclined to float along the river and sing away, busy doing nothing at all. After a few months at home I was pretty fairly loaded with cabin fever. There is only so much random house puttering, TV show binging and video games one can take. It was my wife who gave me the kick needed to go find something to do, and that’s when this site was born. I had a pretty fair amount of coffee knowledge and so figured I could just blog about coffee. This little idea grew… a bit…. but that’s another story.
For now the key here is that I cannot work a normal job, but I am learning that that doesn’t stop me having value and being able to contribute. I have realised though that for quite some time, that’s exactly what I thought of myself. I honestly had been taught by the world around me that I should accept my illness and restrictions and shut up and sit down. Lots of you may be crying out that this is not what you would say, and you surely mean that, I know you do. But the reality is that the structure of our world, the policies of our government and the attitudes we have become so used to, make disabled people a second class of person. Even now with the relaunch of this site and its services, I am battling a system that makes working hard, unnecessarily complicated and a huge risk. The reality is that by sticking my head above the walls like this, and talking openly about trying to “work” I risk being reassessed and having my benefits and support taken away.
So after reading the last 2,000+ words (and thanks for sticking with it!) you may wonder if I have a core point, and I do. Actually to be fair I have a few…
1: “What you see is not always what you get”
FND is often an “invisible illness” and deeply misunderstood, so please take some time to be aware of its existence. Maybe even spread the word, perhaps encourage a friend or two to read this.
2: “Help is hard to come by”
Reading through this I would hope you will have realised that getting to a place where I can call my life a decent, even a happy one, has been a struggle. All the best intentions in the world mean nothing when the system is so poorly designed. I will talk more about this in other articles, but please know that life as a disabled person in the UK is not a free ride!
3: “Disabled people want to do things!”
Yes my life is immensely restricted, yes for me to do things it takes effort and adaption on all sides. But I do want to do those things.
4: “Being disabled doesn’t mean being without value”
There is all the same potential for knowledge and skill in someone living with an illness as there is in someone who isn’t. It may take some changes in perspective to free that potential, but that has to be worth it!
Anyway thanks for reading, and take care!
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Thanks, – Bear