One of the things I’ve done is to read a lot of memoirs of catastrophe. Catastrophe takes many forms, but many of these memoirs involved medical crises.
Mercifully, I haven’t myself had an experience with a medical catastrophe. And believe me, I’m very grateful for that. As I was reading, I made notes on the writers’ advice about how to cope with one. It seems reductive to sum up these profound experiences in a tips list, but the writers themselves seemed eager to try to help others learn from what they went through.
Because, unfortunately, although these memoirs are packed with accounts of doctors, nurses, and others who were wonderful, they’re also crammed with stories about devastating problems and hideous frustration with doctors, nurses, and hospitals.
I took the following lessons:
1. Don’t go alone to a stressful doctor’s visit. You can’t listen well when you’re processing difficult information. You need support and another set of ears.
2. Bring a list of questions, take notes, and write everything down. Ask how to spell unfamiliar words – you’ll want to look them up or discuss with other people.
3. Or even use a tape-recorder.
4. Don’t feel like you have to make a decision on the spot. It’s very rare that action has to be immediate. Take the time to absorb the facts, learn about your condition, and consult other doctors.
5. Keep a binder in which you record everything you learn, every decision that’s made, everything that’s performed, every result you know.
6. Always bring all that information with you.
7. Remember, it’s okay to ask for a second opinion. You should.
8. It’s surprisingly important to like and respect your doctor. This matters!
9. Ask your doctor if you may contact him or her between visits, and if so, how?
10. Don’t be afraid to ask how many times the doctor has performed a particular procedure.
11. See if you can call ahead and find out if the doctor is running late before you head into an appointment.
12. Double-check everything you possibly can. When my father was in the hospital, his doctor told him not to drink anything, then a nurse urged him to take a pill with water—which would have been disastrous, if he’d done it. A friend who went through chemo had a special notebook where she wrote down her prescriptions, and checked her notes against the chemo bags before she allowed each treatment to proceed.
13. Always ask: Is this procedure, drug, etc. REALLY necessary? Do you really have to have that enema? Are there other, less invasive options? Over and over in the memoirs, I read about actions that weren’t really necessary that led to major pain or complications. Side effects, pain, difficulty of recovery, time in the hospital, risk of infection, possibility of medical mistake – these are real risks. Arthur Frank refused to sign a consent form when his doctor didn’t explain an operation to his satisfaction—and then ended up not having it at all.
14. Try to have someone with you as much as possible. After reading these memoirs, I would try my darndest never to let a family member stay one hour unaccompanied in a hospital.
15. Don’t postpone things—like seeing friends—until you’re “doing better.” You may never do better.
16. Manage pain!
17. This last one strikes me as quite unfair, but people with experience with medical catastrophes say that it does matter: try to be likeable. Gilda Radner, in particular, emphasized it in her absorbing memoir, It’s Always Something.
Being gregarious and upbeat wins you more attention and care. It doesn’t seem fair that your likeability should matter at a time when you’re in pain and afraid. But it does. So try.