Friday, April 25, 2008

Life with undiagnosed and/or chronic illness

When you have some sort of illness or injury, they tell you something about how long it will last and what symptoms you will go through, and it really helps to know what to expect. Having an undiagnosed illness is the same way -- it has its own set of experiences -- but no one tells you what they are. So as a service to anyone who may be in that boat, here are some things you may experience:
  • Time after time, you'll think that getting cured is just around the corner, whether because you have a good day, or because you start a new treatment, but then you won't be cured.
  • When you feel better sometimes and worse sometimes for no apparent reason, you'll be looking high and low for a reason. You can become quite superstitious, suspecting everything that you did and everything that you ate of having an impact.
  • People will tell you, "You don't look sick."
  • People will tell you that it must be psychological.
  • You will frequently doubt your own knowledge of yourself. With everyone telling you nothing is wrong, and you not wanting anything to be wrong, it's easier to just believe it and try to live like a normal person.
  • You'll make the rounds of doctor after doctor, and every one has a different theory, a different round of tests, a different set of drugs for you to take. The ineffective tests and treatments will take a toll on your already weak body.
  • You try to avoid talking to your doctor about what is going on with you, because you don't want to be saddled with more useless specialist visits, tests, and drugs, nor do you want to be told again that there is nothing really wrong with you.
  • You drastically modify your lifestyle to avoid things that require energy, like having a social or recreational life, and you start to take it for granted, to think that this is a normal way to live.
  • You can't have friends, because friends expect you to be able to make plans to do things with them. You can't make any plans for future days, because you don't know which day will be a good day and which will be a bad day. Except you do know most likely you'll be too tired to do whatever the other people want to do.
  • The Spoon Theory gives a description of life with chronic illness, though in this case, the person knows what the illness is.

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