If you have a friend, loved one, or are just trying to understand what it’s like to live with a chronic illness, take the time to read the wonderfully written Spoon Theory, by Christine Miserandino. It’s the only article that I’ve ever seen about chronic illness and pain, that is really able to convey the feelings of constantly trying to balance what must be done to survive on a daily basis, work, preparing food, affording your medications, tests, going to weekly sometimes daily doctors appointments with the lack of energy and the constant companion of pain.
Until people really understand the daily stress that the chronically ill face, we will continue to have a medical system that is severely and painfully lacking, as well as a medicare program which ignores the fact that much of it’s population is not the older retiree, but young people who are very ill and must be cared for very differently.
Could you do it? Could you balance being in pain, having a family life, working, affording a home, as well as thousands of dollars a month in medical bills? I know I couldn’t do it while having Central Pain Syndrome, Fibromyalgia, PseudoTumor Cerebri, Mild Kidney Nephritis, and a history of Lupus.
Now I’m one of the lucky ones. After two years of fighting, I get federal disability and was approved for medicare, though it’s coverage rates are easily three times as expensive as our current insurance. With my husbands current insurance our out of pocket medical expenses range between $1100-$1400 a month. I think everyone should imagine what would really happen to them if they were diagnosed tomorrow with a disease like Lupus, what would you need to help you survive, and could you fight it without radically changing your lifestyle?