Sunday, December 2, 2012
Where is the Prize? | Psychology Today
"The unwell and disabled life asks nothing more than constant bravery."
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And if your disability is CFS, no one recognizes the bravery. It actually takes more to survive with CFS than it does to deal with, say, cancer, because if you have cancer everyone's falling all over themselves to praise you for your courage. No one says anything like that to me. No one rallied around to help -- my friends abandoned me. No casseroles, no offers to help with chores, no charity asking what I need help with.
Cancer patients can look forward to a 95% cure if it's caught early, and then go right back to their lives. CFS has a ZERO percent cure rate. Oh, some of us go into remission, but the sword is always hanging over your head that if you do too much you're going to go into relapse. Even when I was in remission, I couldn't go back to doing all the things I'd done before. I looked pretty healthy at work, but no one saw that I'd go home and collapse, not budge off the couch -- no more hiking in the clean air in the mountains, no more softball, no more volleyball, just work and rest up for work.
My dad, a cancer survivor, was healthier at 80 than I was at 50. When he passed away recently, everyone marvelled that he'd survived nearly 20 years after his cancer surgery. No one marvels that I've survived more than 25 years with CFS. No one marvels at how well I'm doing given that Modern Medical Science has nothing akin to chemo to offer CFS patients. No, they're too busy scolding me for all the things I don't do.
No one threw me a 5-year survivor party or 10-year survivor, and if I somehow manage to survive for 50 years with a disease that's tried to kill me several times already, no one will throw me a party for that remarkable achievement either.
And I'm too busy bravely battling the disease to organize my own survivor party.