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Oh no he din't - Pahavit's Universe — LiveJournal

pahavit
Date: 10-22-2008 1:59 PM
Subject: Oh no he din't
Security: Public
Tags:fibromyalgia, me/cfs
Oh no he din't

"You're only as disabled as you let yourself be."

That's what some nitwit posted on a (non-disability) discussion forum, in a thread devoted to networking for persons with various disabilities.

A couple of people tore him a new one (and very politely, too). So I had a think about it, and came up with this reply:

Dude! I had no idea I had such total control over the HHV6-A virus and my sky-high 2', 5'-synthetase and R-Nase L levels! I'm gonna call my doctor right away with the good news! She'll be so envious I can cure myself! I've been so lazy letting my R-Nase L destroy all my messenger RNA at the cellular level as well as all my liver enzymes! And I totally dropped the ball by allowing all the metabolic toxins created by a chronic viral infection to injure my hypothalamus! Shame on me for letting that happen! </sarcasm>

I could have gone on and on, but I think that got the point across sufficiently.

A lot of people who know of disability only as a mobility or sensory impairment have no understanding whatsoever of chronic illness. It's a completely different kind of experience. The original comment was insensitive and showed profound ignorance on his part. But, it takes all kinds to make a world, as they say, so what can you do?

An acquaintance of mine said that having a positive attitude can have a major effect on the outcome of an illness, whether it's acute or chronic.

Funny how it's always the people who aren't themselves struggling with my disability that are so quick to sing the praises of a positive attitude. 

The truth is my positive attitude hasn't got me squat. I'm getting sicker as the years go by, and being a hero about it sucks. The reality is that having ME/CFIDS and fibromyalgia are a living hell.

I usually do my best to ignore my pain and exhaustion and keep going the best I can in spite of it, but the usefulness of that coping strategy has failed.

Every day I wake up and ask the universe to take away my exhaustion and pain. Every day I struggle to understand why I am going through such a miserable experience. Every day I grow more tired of being ''heroic" and positive.

I've spent the past decade being ''heroic'' and positive in the face of unrelenting pain and exhaustion. I've paid my dues. I've learned some good lessons from the experience. But I also think it's time I stopped pretending that daily pain and crushing fatigue are tolerable. Because they're not.

I've had fibromyalgia and ME/CFIDS since the late 1970s. I know exactly how far a positive attitude has got me. I'm not sick because I have a negative attitude. I'm not disabled because I "let myself" be. How positive can you realistically be when you have painful and debilitating illnesses with no cure and not even a standard treatment protocol? Positive attitudes don't halt the disease process, and when you've been sick beyond a certain point, the rationale for staying positive fails.

If that makes folks uncomfortable, well, then, too bad. They should thank their lucky stars they're not me and that they're able to walk away from this issue and not have it hit them like a ton of bricks when they open their eyes each morning.


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