I was asked for what I tell people before they see a new specialist for a new icky diagnosis. My top ten tips for being a patient.
1. Bring a friend with you. They’re there to support you, to validate your story, to listen and hear things you might not notice, to provide a second perspective before/during/after.
2. Take notes. At the very least, date, time, place, who you met with, what questions were asked, what answers were given, what tests were taken, and how to find the test results. (This is especially necessary if you are in a crisis situation or the emergency room, but it’s hard to do under those circumstances. Make a habit of it now, and it will be easier to do when you need it most.)
3. Who else can help take notes? Ask the person who comes with you to take notes for you. You’ll have a hard time remembering, no matter how brilliant your memory is. You may want to ask if you can record the conversation to listen to again later, but a lot of healthcare folk are uncomfortable with that, and they don’t know you well yet, so if they say “no” it’s really not a surprise.
4. Ask the doctor to write out or spell words that are unfamiliar to you. Also ask the doctor for alternate words that describe the same idea.
5. Have a list of your questions before you arrive. Prioritize the questions. Pick your top three (because the doctor probably won’t have time for more).
6. Ask people for more question ideas. If your brain is frozen and you can’t think of what questions to ask, try searching, “What should I ask” or “top ten questions to ask about” with the name of your diagnosis. You might also try searching “new diagnosis” with the name of your diagnosis.
7. Use questions to engage & build trust with your doctor. When you do research in advance, some of it will raise questions. If you bring in info to ask about, try asking your doctor questions like, “Is this good information for me? Why or why not? What would you recommend instead or in addition?”
8. Ask the right question for the right doctor. Keep in mind that you’ll probably see a whole bunch of different health care folk, and not all of them are good at answering all questions. If you aren’t getting the answer to a question that is helpful for you, ask “Is there someone else of whom I should ask this question?”
9. Read the fine print, and read your records. If you need extra time to read it or think things through, you should have the right to take whatever time you need. You also have the right to ask for copies of your medical records, and there shouldn’t be a charge, or only a minor charge. If you don’t have the time or energy to read your records (I totally get it, it’s exhausting), do you have a trusted friend who can help you review these? Mistakes creep in under the best of circumstances, and things go better when you catch errors quickly.
10. Find a patient support group with people who are kind and generous. Being angry is completely okay as long as they don’t get stuck there. You don’t want a group that spends a lot of time censoring discussion, but you also don’t want a group that lifts up misinformation. It’s okay to join different groups until you find the right one for you. You don’t have to talk. You can lurk until you feel comfortable talking. You can search the archives to see if someone else already answered your questions.
Most of this is in the book Nancy Allee and I wrote 20 years ago — Medical Library Association Encyclopedic Guide to Searching and Finding Health Information on the Web. There you go — this is the Cliff Notes version.