Notes for Someone Diagnosed with a Chronic Illness
1. Stop asking, why you? Lightning has to strike somewhere. Why not you?
2. When you see doctors, you're purchasing advice. Take it seriously.
3. Yet, judiciously, seek second opinions - especially for really important decisions, or if you are unsure. And remember, your doctors work for you.
4. Doctors won't always volunteer the whole truth, but they will usually tell you if you ask.
5. Know whether you are being treated according to the guidelines, and, if not, why not. (If someone says, āThis medication is just the very latest thing!ā, run a mile and donāt come back until youāve tried the gold standard).
6. Understand whatās going on, and follow the facts. Observe things. Write them down. And never mind what worked for Auntie Marge, even if a celebrity recommends it: the plural of anecdotes is not data.
7. Learn and break the Rule of Inverse Apologies: when you have an acute illness, other people apologise to you (āOh, you have the flu? Iām so sorry, how awful for you!ā). With a chronic illness, you apologise to them. (āNo, I canāt make it this time, either; Iām really sorry to say no againā¦ā)
8. Weāre brought up to believe we can achieve anything through force of will alone. And, you know what? Itās a lie. There really is such a thing as over-exerting yourself, and some things are impossible. Just make sure you donāt let others tell you where to draw the line.
9. Sleep. Sleep is paramount.
10. Get a good bed. You're going to be spending a lot of time there.
