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25 September 2011 @ 10:17 am
I Forgot About Invisible Illness Week  
But Michelle over at Living with Bob didn't. I love her sense of humor as she deals with a growing list of rare illnesses and responds to the ever popular phrase, "But You Don't Look Sick."

Don't be surprised if you see me snarl in response to that. I'm sure it's meant to be a compliment by some but the effect is crazy-making to anyone who feels like crap. It's impossible to take solace in how you look when how you look just gets your very real suffering discounted.

I've found myself pondering lately how to talk to people who contradict me when I mention something I actually experience every day. I don't know when I was cast as an unreliable narrator of my own life and bodily feelings and illnesses. When did I create the impression that I'm a hypochondriac? Or a malingerer? The fact is that every time I have had a persistent symptom of some kind a direct, organic cause was found and when repaired or treated properly, the symptom subsided. Some things are being managed on a continuing basis but several times I've been accused of phantom pain being all in my head and each time a cause was later found and dealt with. I think I have a great track record of knowing what is going on with my body. The winter before my heart disease diagnosis I suspected my arteries were getting seriously clogged but as I wasn't having chest pain yet and had passed a treadmill a year and a half earlier I didn't think my doctor would take my feelings seriously. By summer I began having chest pain on exertion and shortly after got my diagnosis and bypass surgery.

It saddens me when dear friends discount me like this and I need to figure out the best way to broach the topic and ask for it to stop. Most of all, I'd like to understand why any friend would be reluctant to just accept my own account of what life is like for me these days and what symptoms I am noticing, especially cognitively. Perhaps she is in the denial phase while I have long since moved on to acceptance and adaptation.
Mari Adkinsmariadkins on September 25th, 2011 06:54 pm (UTC)
i went on a tear on twitter the other day - about how saying "snap out of it" is the opposite of help.
Wendynothingtoyou on September 25th, 2011 09:24 pm (UTC)
I live in fear of 'You look well' said as an accusation rather than a compliment.
Mari Adkinsmariadkins on September 25th, 2011 10:23 pm (UTC)
"You look good. How've you been doing?" Gets me every time!
Christinekisekileia on September 26th, 2011 03:48 pm (UTC)
Unfortunately, a lot of people are reluctant to accept that people can be sick without looking sick, or that other people have different experiences of life than they do. As you're no doubt well aware, there's an amazing general societal reluctance to accept the realities of the experiences of people with chronic pain. I don't doubt that sexism and fat-phobia are contributing to it in your case as well. I wish I understood better why these things happen.
Elle: Smokin Gabetheletterelle on September 28th, 2011 05:17 pm (UTC)
Not to mention the invisible disability of mental illness. I overheard a coworker making fun of my vague explanation for having forgotten another coworker's birthday, right after I returned to work after the week I was out with my first hypomanic episode.

I confronted her with it and explained about my diagnosis, and exactly why I'd been out and why I didn't want to feel like I had to disclose that to protect myself from nasty comments. She felt terrible. Good.