Sometimes the hardest part of a new situation, in any aspect of life but particularly our health, is saying out loud the scary thing.
Someone dear to me received concerning test results and asked me to help craft a set of questions for their next appointment – the very first one since getting the results electronically. I have lots of books about patient empowerment, but I relied on two favorites: Jessie Gruman’s AfterShock and Elizabeth Cohen’s The Empowered Patient.
Here are the questions I gleaned from those sources:
1) What are the specifics of my disease? What do all the terms mean?
2) At what stage is my disease? How advanced is it? How will I know if it is progressing? Is there a typical progression that you can tell me about?
3) How does my unique medical history affect the progress and treatment of this condition? Does my family history make a difference?
4) Is there anything new or emerging in the field that is promising and that I should look into now?
5) Should I see a specialist? Do you have one to recommend? How quickly do I need to get an appointment?
My friend asked if she should seek peer health advice. I played the role of Rebel Health Seeker (going out on the hunt for information) and looked at two well-known, peer-led platforms, finding what I expected: It is too early in this health journey to join a community. She only has test results, not a diagnosis.
Here are my questions for you, my community of health geeks: How often are you asked to play this role for friends & family? Do you have a set of questions, resources, and books that you always recommend?
When I posted this on LinkedIn, Jennifer Sweeney wrote: “Always get a second and even third opinion. Look into the comparative effectiveness research when thinking about treatment options. Change your care team if they don’t respond well to the questions you pose.”
Gilles Frydman advised that now “the perfect moment to get on the way to become a micro-expert. Read whatever you can about the potential condition. The day you get a diagnosis you’ll be equipped to deal with it as an already informed person and that guarantees a much greater ability to properly listen to what the medical doc/team will tell you.”
David Harlow wrote, “Get a notebook and bring it to this and every following appointment, and take notes, and note questions that occur to you later or in between appointments, as well as answers and resources. Consider bringing someone with you: a friend/ family member who may be able to complement your ability to hear clearly what’s being said and to frame questions on the spot (and to be there for moral support).”
Please share your insights in the comments.