Fnd - Blog Posts
Just made an account on Medium so I could read this. Made it about 1/3 through and I'm absolutely hooked and excited to finish it!! But first, time for a nap.
For the longest time, I have had trouble understanding FND - specifically whether it's just a shitty diagnosis made up by the medical system to gaslight people or if it's a genuine medical condition. This essay is rly helpful and has already broadened my understanding. It's incredibly well written, particularly bc of the extremely thorough research it's a result of
I am one of the most medically examined people in North America. For over a decade, no one could explain why I lost my ability to walk, speak, and use my hands. Why the lightning-like headaches? Why the ringing in my ears? Test after test came back negative. Doctors thought I might have a genetic abnormality no one's ever seen before, or a condition so rare that it had previously escaped medical classification. Then I got accepted to the top undiagnosed disease research program in the world, and they told me the only diagnosis I was unprepared to hear: it was Functional Neurological Disorder (FND), a much-misunderstood condition which was once known as Conversion Disorder, and before that, as Hysteria. And that was only the beginning of things getting weird. The essay above is the product of three years of research into the history, neuroscience, and politics of FND. It touches on the many medical failures that define the history of the disorder, the pervasive sexism and lazy mind-body dualism that prevented scholars from seeing it clearly, and why - finally - a better understanding may be at hand, with revolutionary implications for how we understand human consciousness and the experience of having a body.
FND fucked my life up. This is my reply. Thanks for reading.
Sometimes love isn't grand gestures or daily phone calls
Sometimes love is when my mother comes home from visiting family 7 hours away. Where I couldn't go. Because, because car ride are too much and I'm sick.
She comes home and tells me of my whole family crying about me when they were leaving. Wishing they could do something
Maybe love is when my cousin gifts me fabric and patterns because she knows I love sewing. Even if I can't right now.
Perhaps love is my aunt gifting me rolls of leather and upholstery fabric and 3 kilos of cherries for the same reason.
Love might be another cousin crying, wishing my mother to tell me she thinks about me every day but doesn't have the words.
These people, my blood, that never felt like family or close. That are so far away in the world and in life.
Perhaps life is in those small moments. And way more people care for you than you think. Even if you have no clue. And thought they'd abandoned you long ago.
Another good thing to come from this bummshit journey :)
People care, we are all just as awkward and lost for words. Give others the grace to be as awkward as you think yourself to be. They might surprise you
The only thing my brain seems capable of is rereading the series that dominated my childhood and largely shaped who I am. Mostly because I've read it like 20 times and I don't have to think, just remember.
~With scheduled breaks in a dark room to avoid sensory overload as prescribed
And I'm not mad about it. It's one of the lights right now, I have time to spend my days reading these books.
So many of my characteristics make sense
I have been ripped from the life I was building for myself once again. The dreams, the places I was getting to know, the people I was meeting, the future I was walking towards are gone.
My own body is fighting me. And my brain often times does not work. Without my brain, and ideas and dreams, who am I?
For my mother always described me as a Tsunami. Try to stop a Tsunami, is how she'd describe me when I'd had an idea. These days I feel like little more than a puddle.
These days are also the days that I unexpectedly get to spend months with my family. I get to go to my brother's graduation. I'm not halfway across the continent.
These days I get to enjoy my mother's cooking. I get to tell her more about out who I've become. And I find out about her.
These days my father, who has never been good with words, and who never actually wanted children, offers to pay for my motorcycle license once I feel better. If it helps, he says, I'll gladly pay for it.
These days, when my legs shake and I can suddenly barely walk, my dad will grab me. Hold me up. And pretend to dance with me through the living room.
These days I will be laughing so hard I cry. Instead of bawling my eyes out.
I do that too, sometimes. Because it's. Not. Fair.
But these days, and these moments would've never happened were I not sick.
It'll get better. And even if it doesn't, I can still make a happy life for myself
Doctor: Here's a medication I want you to try, but it is a bit big. You might need to break it into smaller pieces so you don't choke.
Me:
It’s FND awareness month so I’ve decided imma talk about my experiences.
So if you don’t know what FND is, it’s basically the brain sending messages incorrectly throughout the body. In my case, I have various conditions alongside it. Particularly Epilepsy and Tourette’s Syndrome
I started having seizures very abruptly towards the end of 2021, which led to me having my entire life change. I had to drop out of school and I had no clue what to expect for my future.
I’ve had confirmed EEGs and my Tourette’s started before anything else. However, it wasn’t long before I developed other neurological issues. This included tremors and dystonia, along with other gait issues that would result in me needing mobility aids. I also learned that not all of my seizures were epileptic in origin. I had PNES, or Psychogenic Nonepileptic Seizures.
It’s been frustrating and rough on my already messy mental health, but I’m still making it day by day. I am trying to finish my high school diploma and do what it takes.
At one point I was practically housebound, and I’ve fortunately had an improved quality of life. However, that doesn’t remove how rough everything is.
That’s enough for me yapping though. If you have a friend with FND or any chronic illness for that matter, just remember to have patience.
No because I feel like I would be called body horror when no I just get bad dystonia sometimes.
It’s horror but in a different way
This actually reminds me of a time I was in a hospital at an Epilepsy Monitoring Unit. It was in a pediatric hospital because I was 16 iirc. I was supposed to be there for three days, and potentially be temporarily taken off my meds while I was there. Well the woman who did my EEG there stopped it after 24 hours. She completely ignored the directions and never took me off my meds for the time I was there.
The issue is, i am diagnosed with epilepsy. I have had it show up on an EEG before. I also have PNES, for context. Right now, my epilepsy is managed enough that my PNES is the main issue.
The fact she immediately ignored all directions the moment she saw I was having PNES episodes from the portion of the EEG she saw. If she just did what she was asked, would I have gotten a better understanding of my epilepsy?
I don’t know if this is truly malpractice or not. Just felt the need to get it off my mind.
“You know that’s medical malpractice right, no doctor is actually doing that.”
Bold of you to assume doctors actually care about what’s malpractice or not when it comes to treating disabled and intersex people
I may not understand psychosomatic disorders, but damn, people definitely should stop stigmatizing them. Like, why the fuck it's called pseudo just because it has mental origin? You wouldn't call someone depression pseudo, so why the fuck you're calling functional symptoms pseudo?
Guys with FND/Conversion disorder/Idk, whatever you call it, you're completely valid. I genuinely don't care about your disease being psychogenic, you're still a legend with completely real symptoms, just not psychical origin.
PNES are PNES. It's a psychological, conversion, functional, dissociative seizure. Of course it's non-epileptic. But. Often missing the word of the seizure being functional can harm those who have non-epileptic, but NOT psychological seizures.
Non-epileptic ≠ Functional.
Get over it.
"Epilepsy this!" "PNES that!"
Yeah, yeah... I got it, now, when will we bring awareness about paroxysmal dyskensias? I bet, there's at least one person who's reading this post and instead of FND has some kind of dyskensia. Do not let doctors down your disorder. The thing that might be seen as psychogenic, can actually be a genetic.
Bring awareness about paroxysmal dyskensias. Do not let them put us down.
Non-epileptic seizure doesn't mean that the seizure is due to FND or PNES! There are much more conditions than epilepsy and PNES. Stop seeing only white and black, when there exists a gray side.
Speaking about dyskinesia always makes people assume that you're talking about FND. Errr....
Not all seizures are epileptic, and not all non-epileptic seizures are PNES. Hope this helps!