And you thought YOU had a lot of medical appointments. . .
Writing on her blog, “Sick With Optimism“, a Canadian patient regularly sees three nephrologists from three different clinics, two hematologists, two rheumatologists, a cardiologist, her GP – “as well as so many interns, inpatient doctors and fellows, I can’t even count!”
I was profoundly moved by her story about how one of her many recent doctors’ appointments evolved. . .
She lives with a chronic medical condition called scleroderma* (an incurable autoimmune disease she’d never even heard of before her own diagnosis) along with kidney failure, a condition called Sjogren’s Syndrome*, and other related medical complications that are very serious.
“At the clinic appointment, my doctor asked me, ‘Who is in charge of you now?’ (meaning, which doctor was coordinating and spearheading my treatment?)
“I was a little taken aback. I figured she should actually know that.
“But the trouble was, I didn’t know myself. My case seemed to be passed around to various specialists depending upon what my greatest need was at any given time.
“My ‘perfect storm’ was a result of a complicated illness, involving a number of specialty areas across two different hospitals.
“Don’t get me wrong, my doctors do communicate amazingly well, considering, but I now understand that I am the one in charge of me.
“It is up to me to make sure that my care is coordinated and makes sense. Just because my symptoms may indicate a certain change in medication or treatment is required, I need to be doing an overall reasonability check.
“For example, recently my blood pressure increased dramatically and I needed to start on a new medication and subsequently increase the dose to be effective. At the same time a doctor from a different clinic wanted me to increase the dose of my immunosuppressant drug again.
“But this time I held off.
“I told the doctor I wanted to adjust to one medication before increasing another.
“It can be difficult to bring yourself to respectfully dispute a doctor’s recommendation, but I found that he was extremely understanding and supportive of my position when I explained my reasoning.
“I was once so eager to see improvements that I agreed to multiple treatment changes at the same time, making it almost impossible when things went wrong to determine what was causing my problem, or if it was the confluence of changes that resulted in a recipe for disaster. Mine is indeed a cautionary tale. I confused my hopes with what was realistically possible.
“I understood that the doctors who had gotten me on the right track before would eventually get me back on that track again.
“The trust in my doctors never waned, but I realized they had been missing an integral player – I had been a spectator instead of a member of the team so far, and that needed to change.”
“For years I was that stereotype — a minivan-driving soccer mom. I know that even an excellent team will struggle when they are short a player, even if that player is not a star.
“Proud as I was, I didn’t admit to myself or anyone else that it was more than I could handle alone. I went to almost all appointments on my own. At first I would just listen and try to remember, then I started taking a few notes, and finally, I pretty much just got lost in the fog of it all.
“Sure, I could beat myself up for not realizing this sooner, but I won’t, for two reasons:
1. Regret is a negative emotion and I try to stay as positive as I can.
2. I was really sick… like an injured player, I was sidelined by my disease, leaving my team playing 10 vs. 11.
Helpful tips from “Sick With Optimism”:
♥ If you are lost in the fog of your own perfect storm, do say something.
♥ If you can’t sort out the details or understand why you are taking certain medications, speak up.
♥ Try to find an advocate or perhaps a few people who are close to you who can be called off the bench to substitute for you if it all becomes too much to handle on your own.
♥ Keep a specific notebook that you or whomever you ask to help you can keep chronological notes in. Keep the notebook with you, that way when you think of a question you can write it down rather than relying solely on your memory. See more of her useful tips on Start a Symptom Journal. Solve a Mystery.
© 2019 Sick With Optimism
Q: Have you ever felt like you’ve been a spectator instead of a key member of your own healthcare team?
NOTE FROM CAROLYN: I wrote much more about how we adapt to becoming a patient in my book, A Woman’s Guide to Living with Heart Disease . You can ask for it at your local library or favourite bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from my publisher, Johns Hopkins University Press (use the code HTWN to save 20% off the list price).
What I learned at Mayo Clinic was shocking (from the Sharing Mayo Clinic website)
*Scleroderma is defined as a group of rare diseases that involve the hardening and tightening of the skin and connective tissues, affecting women more often than men; it most commonly occurs between the ages of 30 and 50. Sjogren’s Syndrome is defined as a disorder of the immune system identified by its two most common symptoms: dry eyes and a dry mouth, often accompanying other immune system disorders like rheumatoid disease or lupus; it affects more women than men, typically after age 40. (Source: Mayo Clinic)
Hat image: JLG at Pixabay