Most difficult aspect of FND

“Most difficult aspect of FND”.

I have had it fine an rough. There are good an bad days. Honestly it’s hard to pick out just a couple difficult moments. Unless you’ve been around somebody like me or know somebody who suffers with a chronic illness. The things I tell you would seem unfathomable an like a real struggle. That’s because it is. This topic folds into yesterdays with stigma playing a HUGE role. It also deals with The misconception of what FND is and how people look at the word “functional”. You also see an aspect of it. You will see that for some reason opinions and emotions do play a role in a doctors diagnosis. It’s shouldn’t but it somehow makes it way there.

First I have to give you a history lesson of what FND did used to be called. Back in the day functional neurological disorder originally was called Conversion Disorder. Sadly the women would get that diagnosis. A man and a woman can walk in with identical symptoms but the man would get a physical diagnosis and the woman would get something different. There is a history of this happening in the medical field. Supposedly it has to do with hormones.

So having that history connected to my diagnosis is not a good start. Then we have the word functional in front of my diagnosis. What does the word functional mean. Well to the every day person functional means it’s working. Yet for me it means nothings working. To the medical world it means medically unexplained. The thing is is functional just means that everything is functionally fine. My brain is just misfiring creating things to act funny. So you could say it like I have a functioning neurological disorder. Sort of but in some parts of the world they say “ The more physically ill you are the more mentally ill you are with functional disorders” functional disorders have a very bad stigma.

Then you have the aspect of trying to have someone believe you. I was so scared to call 911 on thanksgiving it took me a full day! It should never take someone that long to call 911 it should take less than a second. Stigma does that to you. Knowing that the doctors won’t understand you and won’t know what to do with you is the scariest thing in the world.

I’ve had doctors looked me dead in the face and tell me “I think you’re manifesting this”.I have had doctors tell me to my face while my mom is standing next to me “I think you’re making it up.” It is so painful to be sitting there trying to explain how you feel to a doctor and they tell you “I don’t believe you”. you don’t know how lonely it feels until you get to that point. You desperately try to explain to anybody. You just want to feel validated. You just want to feel heard. You just don’t want to feel crazy.

“FND lacks ownership; an orphan to a disciplinary home in medicine, falling in the netherworld of thew neurology-psychiatry abyss. The high prevalence, poor prognosis, lack of available treatments, and the fact that patients often have disbelief in their diagnosis has lead to a “A crisis for neurology”’ -frontiers in neurology

Then comes the other aspect of treatment. Inpatient and outpatient programs for functional neurological disorder are far and few between. I have yet to find anyone here since moving. There are a few treatment programs/ research please in the US. I know of two treatment programs in the US that are inpatient supposedly. The waiting list for these are years. The United States is about 10 years behind on research and the UK and Australia are the forefront runners for functional neurological disorder. I had to go online and find the support groups and then feed the information. We have to create our own programs because there is no care team for us. When I go into an ER they do not know what FND is. Every hospital I’ve been to they’ve never heard of my disorder well enough to help.

So there’s our problem they have either never heard of it or they have and have know idea how to help.. We carry around the stigma and the weight of the world not understanding on our shoulders because we are just misunderstood so often. We need better care. We need better treatment. We need better access to medical facilities. We need more research done on our functional neurological disorder. We need love.

Don’t let FND define you! You are so much more than your illness! Hold your head high if you live with this devastating disorder. You are an FND warrior!”

-fndrecovery.com -Chelsea Lawrence. - FND hope warriors.