Whats in your head?

[Gud4Ewe]

Is FND a disability?

The 'experts' have said its largely a mental condition. It is said to be "all in our head". I love that. I laugh every time someone tells me that. Of course its all in our head. Where else would you keep your brain? In a jar on your desk?

Am I disabled? I ask myself when I first wake up; when the room is quiet, and the only thing I feel are my muscles firing from head to toe like out of sync Christmas lights. I lay there, while every single muscle in both feet, twitch and shudder as if I were a horse avoiding the bite of a fly; I think about my day ahead. Will my feet hold me today when I put them on the floor? Yes. Can I physically feel the sensation that they are holding me up? Not all the time, but that is the part of this that is "All in my head.". Each morning I logic the pain. If this pain were real, could I stand? No. AM I standing? Yes. Then this part is what is "in my head". It is with that understanding that I take my steps each day. It is how I know when something is wrong, or when its simply, this. Does this logic make the pain stop? Eventually it dulls, but it comes back. It never stops.

I have had FND since I was an small. It is not an illness or an injury. Knowing that, I look at my diagnosis again. "Is FND a disability?" I am not disabled in the true definition. So what IS this? I am unique. A category of human evolution. Do I have days I can't do what "other people" do? Absolutely, and more often than I care to admit.

The overwhelming population dictates the definition of the word "normal". Normal really just means, "Most of us". It doesn't mean you are wrong or defective, we simply don't fit into the neat box that society likes to keep everyone in.

I think we need to redefine the word disabled. The social requirements of 'normal society' simply exceed my biology. That doesn't mean that among my peers I am disabled, but it does mean I am not keeping up with the standardized checklist of requirements. Yes, in my case FND is in fact, a disability. It breaks my heart to say so. I am not broken. I am fully able. I just have different limits than you do. My mind is sharp, and my tongue can be sharper still. The fact that sometimes I can't control what my muscles do doesn't make me less important, or less functional. Those things are MY normal. I don't see myself as disabled. I'm simply not you.

[thinkin]

Hi,

It is not "all in your head". Signals are getting lost and interfering with each other. You are disabled in the true sense of the world in that you have a long term condition that is not trivial - at least that's how it's defined in the UK. Though it is not due to a disease process it does not trivialise FND. The work of Prof Mark Edwards researched using processes like fMRI to prove that it's an actual problem with the brain. You wouldn't say someone with conduction problems in their heart didn't have a heart problem and that's just a pump. You have a conduction problem with your brain. Hence all the weird and wonderful symptoms.

Maybe it's the way you are judging disabled people that's the problem and so you don't feel like "them" and don't realise that lots of disabled people don't feel like "them" either.

Just because there are psychological elements doesn't mean you can "snap out of it". SCBU babies get sick and die at a higher rate if they don't have their cuddles and the importance of skin on skin contact has been proven - doesn't mean that they don't have problems. People who have heart attacks have a much better survival rate if they have loved ones - it does not make heart attacks "all in your head", the same has been found of many other illnesses. In fact meditation helps the survival rates of many common diseases, but that does not make their conditions are in their head. Drug trials for diseases have to be double blind placebo trials to factor out the placebo effect. People improve on fake medication, people with serious diseases, it does not mean it's all in the head. Hope is a powerful drug.

So if you are faced with a medical professional saying that it's a mental health issue enlighten them - and quite frankly they are trivialising all those poor people with mental heath issues who would love to be able to just "snap out of it". Remind them that fMRI's have been around for a long while now and it can be seen that we have signalling issues. Just bounce them to the FND Hope websites. There's stuff on there for professionals. In fact by ignoring evidence based research they are being unprofessional. If they are being particularly dismissive and rude, remind them of that. Also remind them that there are doctors who teach at top university hospitals that know far more than they do if they have really deserved a put down.

Anyway so yes, FND is a disability. Sorry the morons who have been dealing with you have not based their opinions on medical evidence. You are far, far from alone. You are still you and you don't have to use the label if you don't want to. Lots of people use it to protect their jobs and themselves from far more abled bodied people who will never, ever know how lucky they truly are.

xx