September 25th, 2011

2013pic

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.