TW: I mention symptoms that some sufferers might find triggering.
I love a good celebration, and as a proud FND (functional neurological disorder) warrior FND Awareness Day is my favourite celebration of all. So, whether you are a fellow warrior or a conscientious citizen ready to learn, grab yourself a cuppa and a big slice of cake and let’s talk FND!
What is FND?
FND is a debilitating long term health condition characterised by a problem in the functioning of the brain’s reception and transmission of neural signals (all the parts are intact, but they aren’t communicating properly). What this means for the individual changes on a case-by-case basis. Some people are wheelchair bound, some have seizures, and some people even go blind with it. My FND presents in episodes of symptoms that last anything from a few moments to a few days in which I experience impaired mobility, spasms, incontinence, tics, slurred speech, dystonia, olfactory hallucinations, pain, cognitive impairment, irresponsiveness or usually some funky concoction of all the above.
What are the biggest challenges for FND rights?
All conditions and disabilities have unique challenges, and FND is no exception. Since research into FND is disproportionately minimal (due, in part, to neuropsychological stigma), FND patients often suffer the horrible experience of being treated by doctors who misunderstand their condition in harmful and traumatic ways. We are left in a system that can’t (and sometimes simply won’t) support us, and the awful truth is that if I didn’t have the support of my loving family I simply would not have survived the wait for diagnosis.
In addition to that, FND doesn’t fit neatly into the boxes required of disabled people for access to support, meaning we’re often neglected or refused vital treatment. This is partly due to the fact that the nature of our condition changes so drastically from day to day (or even moment to moment). So, we slip through the gaps of policy and protocol and due to the debilitating nature of our condition we are often not able to adequately advocate for ourselves and our rights.
What do we do about it?
But it’s not hopeless! The solution is awareness, dialogue, and representation, all of which contribute to advancements in research (which means improvements in quality of life). In the past ten years FND awareness has progressed enormously and the fact that I’m even writing this post stands as testimony to the fact that things are getting better.
FND warriors, celebrate yourselves with me, because the impossible feats you go through every single day just to exist are paving the way for a better future for people like us. Years from now the pain we are suffering will be reflected in comprehensive, accessible healthcare and safeguarding for those with FND, and we will be understood not just by specialists, but by everybody. It will get better, (I promise!)