January 21, 2009

But you look great!

Ah, yes the first time I heard that, as I peered at the woman through my fatigue-bleared eyes and adjusted my jacket so I could secretly, urgently, scratch my latest injection site, which was doing its usual growth into a red angry itchy welt....
I was at a conference today about chronic disease management and it was like the entire conference was geared to me - all about the cycle of disease and poverty, about the abysmal income of people on social assistance including ODB, the differential treatment the poor get, the importance of positive thinking, humour, never giving up...and the effect chronic illness has on families.
As a newly divorced woman, who left her marriage before diagnosis but partially based on the total lack of support I was getting from my husband on anything, and as a health care manager who works trying to get care for people with chronic disease, and as someone looking at the potential for poverty just ahead, I could identify with it all. It was interesting, motivating, and even gave me an idea about a possible solution to my fatigue problem in terms of work.
I'd put on makeup and a nice jacket to go to the conference, and everyone kept telling me I looked good. A few know of my diagnosis, and asked how I was. I told them I was slipping into another flare up and felt pretty ragged - and their comment - "But you look great!" highlighted the problem so many people with chronic illnesses face - unless we walk with a limp or have missing parts, everyone assumes we are "normal". One of my more perceptive colleagues said, after the comment, "Wow, that must be the worst thing for you - feeling bad, but looking good - I mean, how can you persuade anyone you are not okay?"

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