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Life With Chronic Illness: The Spoon Theory


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?

Click here to read: The Spoon Theory By Christine Miserandino

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One thought on “Life With Chronic Illness: The Spoon Theory

  1. Health care reforms tantalizing protection against treating pregnancy as a pre-existing condition with a nine-month waiting period natch and we wont be waiting that long…We chose our current health insurance plan by virtue of its being just about the cheapest our family of three could find. It has a 6 000 family deductible up to 300 a year combined for all of us in preventive care and its HSA eligible so we can theoretically store money away pre-tax that can be used toward medical expenses. I say theoretically because our most recent HSA money disappeared when it turned out the bank managers had been embezzling but thats neither here nor there. ..PLAN A If we upgraded with our current insurer it would be 516 month for the cheapest plan that includes maternity.

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