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5:22pm July 8, 2014

my-fibro-life:

I’m so sick of people saying fibro doesn’t get worse. That’s such utter bullshit.

One, I can look back over my own life for the last twenty years and see that symptoms I had got much worse and new symptoms appeared.

Two, I can tell you right now of two distinct periods in my life when my symptoms dramatically worsened. Both times were in the fall; one in 2013 and before that in 2011. Before 2011, I wasn’t even on medication for any symptoms (except depression/anxiety). But not for pain. That fall, I couldn’t get out of a chair, especially in the evenings, without help from my husband or daughter due to the weakness in my legs and the pain was so excruciating, I began having those thoughts— “I don’t think I can live like this.”

Three, it is an ever-changing illness. Fall and winter are worse (for me) than spring or summer in regards to pain. Summer and heat brings it’s own symptoms. But even on a given day: I feel like crap in the morning; if it’s a good day, I’ll have an improved late morning and afternoon; by evening, the symptoms, especially pain then insomnia will creep back in and begin building quickly. And those are good days. Every day is different. Every season is different. Every hour is different.

Don’t tell me it doesn’t get worse. Maybe for some people it doesn’t. But for others, it does. How about let’s just stop trying to generalize about an illness that’s so changing its not a disorder it’s a syndrome because it’s a “cluster of symptoms.” How about that?

They say the same thing about autism.

“Autism isn’t progressive.”

Except then a bunch of autistic people were saying “Yes, for us, it is.”

And then it turned out there was a whole condition called autistic catatonia, where basically a lot of your motor-related and executive functioning related (and sensory-related, but they don’t talk about that in the clinical studies because you can’t measure it) stuff gets worse and worse over time, and you can even lose the ability to speak even if you had Asperger’s and never had a speech delay in the first place, and all this other stuff.

And autistic people were saying this for ages before the researchers took it seriously.  That, yes, autism can be progressive for some of us, for unknown reasons.  (Although a lot of us suspect it works like post-polio syndrome:  The ones who worked the hardest to ‘overcome’ their autism are hit the hardest if they end up with autistic catatonia.)

Of course in some parts of the autistic community you’re not supposed to talk about this for other reasons.  Those other reasons namely being that we’re not supposed to think of autism in a medicalized way at all, which… I can see the point to that, but I can also see the point to the fact that the DSM now allows you to add “catatonic features” as a sub-classifier which can help you get services and other things you really need.  So even if there are non-medical ways to see autism, having a medical diagnosis for when autism goes progressive can be crucial to getting the help you need at that time.

I have autistic catatonia.  When I started experiencing it, there was one case study in an obscure journal that nobody was reading.  It took ten more years for a good study to come out that surveyed a broad group of people and took their problems seriously.  And that’s when I was diagnosed, was when that study came out.  And then it took another five years after that for an entire journal issue to be devoted to it.  Unfortunately one of the authors is a douchebag who only studies it because he only studies things that further his agenda to bring  involuntary electroshock back as a treatment (so he studies severe depression and catatonia, basically, and leapt at this chance).

But anyway.  Yes.  Things can be progressive that nobody thinks are progressive.  And often it’s the people with the condition, and people around us, who notice this long before anyone else does.  (There are other ways autism can seem progressive that aren’t autistic catatonia, too, but that’s a subject for a whole nother post.)