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#FND Twitter has been hot this weekend, and sometimes not nice. There are conversations I’ve chosen not to enter into, but that doesn’t mean I don’t have opinions. I ALWAYS have opinions about FND! 
Here’s the thing- if you’ve been diagnosed with #FND, there are only 2 options. Either the diagnosis is correct, in which case FND is real, or it is wrong and you’ve been misdiagnosed.
If you’ve been misdiagnosed, it’s a huge problem. #FND is a hugely stigmatized disorder. It’s a very real problem that this diagnosis results in a backlash of mistreatment from uninformed medical professionals.
Often when we carry this diagnosis, we are treated with contempt by uninformed medical professionals. Every symptom is suspect and chalked up to being "psychogenic". This attitude is so wrong, so damaging, and if you are in medicine and do this, you need to recognize the harm.
Misdiagnosis makes it nearly impossible to pursue further investigation. That isn’t right. It destroys lives.
Let’s say you’ve been diagnosed with #FND and the diagnosis is correct. You are left with 2 choices. You can accept the diagnosis (made easier when it is delivered well) or you can reject it. Acceptance or rejection are responses. They don’t change the underlying truth.
Let’s first consider acceptance. I’m going to pretend 
that we live in a world without stigma and treatment is readily available. You could then be relieved that your brain is in better shape than you had feared. You could be grateful that death wasn’t in your immediate future
that we live in a world without stigma and treatment is readily available. You could then be relieved that your brain is in better shape than you had feared. You could be grateful that death wasn’t in your immediate future
Hopefully, you could then pursue #FND -informed treatment and you could learn to manage your symptoms. The earlier in your illness that you receive treatment, the better your prognosis. I think of FND as incorrect pathways in my brain.
After 20 years of this, my brain has developed deep ruts for bad pathways. Sometimes it takes a tow truck to pull me out. If your symptoms haven’t been around long, the pathways are less permanent. You can find the correct pathway easier with competent direction.
Now let’s look at the correct diagnosis of #FND, but a refusal to accept it. This is my main concern about #FND deniers. I’ve been in this place. It made me worse. Refusal to accept the diagnosis is understandable. Who wants an illness that brings you contempt and disbelief?
The problem is, rejection doesn’t change truth. My #FND medical history is so complicated it confuses even me. I’ve totally rewritten it several times on my blog and I still don’t think it makes sense. https://fndrecovery.com/my-story/
After my initial "conversion disorder" diagnosis in 2000, I finally after a few months reluctantly accepted the diagnosis. At this point, acceptance WAS the key to recovery. I poured myself into therapy.
I managed to work as a PA for 9 more years. I parented my children. I lived my life. Yes, I scaled back, but mostly I didn’t think about my #FND diagnosis. The hardest thing at this point was recovering my badly bruised psyche that was the result of medical abuse.
With time, doubts crept in. My mother received a terminal neurological diagnosis. Her father had died from an undiagnosed neuropsychiatric condition. I asked myself if maybe I had inherited this rare disorder.
And the truth is- I don’t know. It may be lurking in my brain. I’ll never know since it can’t be definitively diagnosed until autopsy. However, what I do know is that my concerns and anxiety fed my brain with unhelpful thoughts and hypervigilance about every symptom.
Not surprisingly, I got worse. Our thoughts and beliefs have power. Power to cripple us, or power to heal us. We get to choose. Not to say that we can conquer every illness with our minds, but our true selves, our innermost being is determined by how it is fed.
My beliefs that my brain was degenerating led me to increasingly worsened function. I lost the ability to walk. To talk. To feed myself at times. To care for myself and my family. I was moved into assisted living for care.
The saddest part? I preferred this diagnosis, where I received compassion and understanding , to a diagnosis of #FND where is was treated with disgust.
Okay, this thread is now a book. Any publishers out there? Time to make my point.
After I was told that I did not have a terminal illness, that I had been MISdiagnosed, that it was actually #FND all along, I was furious! How dare they tell me I was "crazy" (my word, not theirs).
However, please hear this. Once I again acknowledged that it could be #FND, I allowed myself to consider that maybe, just maybe, I could get better. I became a student of #FND and a student of myself. I am still learning. But now I am functioning.
That was then.
This is now.
I prefer now.
If you’ve been diagnosed with #FND and believe it was a misdiagnosis, I’m sorry. I’ve been there. I don’t know if you have FND or not. Frankly, no one does. You deserve always to be treated with compassion and respect.
If you’ve been diagnosed with #FND and believe it was a misdiagnosis, I’m sorry. I’ve been there. I don’t know if you have FND or not. Frankly, no one does. You deserve always to be treated with compassion and respect.
Your story isn’t over yet. If someday you question if maybe your #FND diagnosis could have been correct after all, please reach out, I get it. It’s worth pursuing the question. You deserve the best your life can be.
