danielle’s story

by danielle lewin

‘It’s all in your head’. Well of course it is, you donut- that’s where my brain is!

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After what has probably been months of worry, stress, heartache and symptoms that no one can explain, you finally reach that moment that you have been waiting for; Diagnosis. If you are anything like me you will be sat in your neurologists office, feeling incredibly anxious and mentally preparing yourself for whatever is thrown at you, and you hear the words functional neurological disorder. Again, if you are anything like me, you draw a blank. Instantly anxiety kicks in. What is this unknown condition? Now, at this point my experience was better off than some (I’ll come back to this), as my neurologist went on to explain how the brain is like a computer; with FND the hardware is working correctly, but there is an issue with the ‘software’; the signals between the brain and body are not being received correctly. She then proceeded to give me an admittedly very helpful web address, and, much to my relief, a referral to neurophysio (yay, finally, some treatment!!!).

And that was it.

I left the office with some very mixed emotions; relief that I wasn’t diagnosed with MS or a brain tumour and that I finally had a name to explain what was wrong, but also, if I’m being completely honest, an overwhelming sense of confusion, and an underlying despair. I hadn’t processed all of what I had been told, but the bit that had started to sink in was that there was no cure, no magic tablets to help ease my symptoms, and yet again after a childhood which was completely ruined by ME, I was facing another condition which very little was actually known about, and would be once more be seen as ‘all in my head’.

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So why is this such an issue? Logically speaking your brain is in your head. The issue is with your brain. Why should this then be a negative? The problem here is unfortunately with societal prejudice and most importantly, disbelief. Picture this; you have spent x amount of time up to this point experiencing, pain, tremors and muscle spasms, and seizures. You’ve lost your mobility, your job, your speech, and your independence. Family and friends are waiting for you to come back home and give them the magic answer... and what exactly have you got to tell them? Because without any understanding other than it’s a stress related condition, all the stock phrases and old prejudices come out to play. ‘Pull yourself together’ ‘Oh right, so you’ve been pretending to be ill then’. And the worst part about it are the doubts and questions you ask yourself. ‘Why can’t I just make myself walk then?’. ‘Am I imagining all this?’. ‘Am I an attention seeker?’. You dread watching the faces of your nearest and dearest, who may up to this point have been wonderful and supportive, withdraw that support and start to doubt you, because you are sure as hell doubting yourself.

Wow. Where does all that negativity come from?

Well, first of all unfortunately you’ve bumped into an elephant in the room; ‘mental illness’. Unfortunately our society is full of prejudice about mental illness. It’s like physical illness’s poorer much maligned sister. It’s not seen as ‘serious’, we’ve all grown up with playground taunts, movie and media coverage, and our own personal experiences. No one wants to be seen as a ‘nutter’, ‘crazy’ or mentally ill…and that includes us. FND is a diagnosis that crosses borders, and, yes, one of those borders can be with mental health conditions. We’ve got our own prejudice and preconception to contend with, as well as other people’s and that unfortunately includes members of the medical profession. To return to my diagnosis moment, at least the neurologist tried to help me understand the condition. I have read other accounts from people who are given a diagnosis of FND, and then find the neurologist in question advises them that now they have this diagnosis they will get better…Wow!!! A miracle!! When has a diagnosis in and of itself ever been the answer to any condition, whether it’s a physical condition or a mental health issue? Yes, it comes as a relief, and that may release some of the stress and lead to an improvement in symptoms, but as a more informed perspective on FND highlights the key here is multifactoral. The journey that brought someone to that office on that day may have involved many different issues, and all those issues need the right kind of support, whether it’s medication, physical therapy, or psychotherapy. Pushing someone out of the office door with no support leaves them with nowhere to go, struggling on a daily basis with an incredibly debilitating condition. This in itself, in my mind, could lead to serious mental health issues such as depression….chicken and egg anyone??

Where else can we look for negativity? Ahh yes, our old friend fear.

Diagnosis is a key moment in anyone’s FND journey. You know what’s wrong now, but you are facing a condition that does not have any easy answers, where do you go from there?? It’s scary…One of the keys to tackling fear is knowledge. Look at the websites, join support groups, and ask all the questions you need to until you feel, in your own mind, that you have reached an understanding of what is going on in your mind and body. By the way, just so you know- am I there yet? No. But then ask yourselves this as well; is it any wonder that I am not when some of the best and brightest in the medical professions aren’t there either? The key phrase here is ‘journey’, things are always changing and moving forward. New research is being done, treatments and recommended therapy’s will change, and most importantly your perception of your condition will change with time too…and that’s OK. We are all unique, special beings, and your journey with FND will be unique. There is no right and wrong here, just what’s right for you.

And finally you’ve got a challenge here too.

Post diagnosis, challenge your preconceptions and prejudice, and don’t even be afraid to challenge others; sometimes you may not feel brave enough to do that, and that’s OK too. As FND is multifactoral, mental health issues may not be part of your unique diagnosis, but if it is, may I say this once and in bold: There is no shame in having a mental health condition!! If you don’t have to face this yourself, support others who do. Challenging this attitude as and where we see it may mean that in the future no one has to look their fears and other people’s in the eye and say ‘It’s all in my head huh? Well duh, isn’t that what having a neurological condition actually means??’


For more information on FND, please click here.