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Home » e-Patient stories » Creating Your Own Self-Advocacy Style

We cannot always choose what happens to us in life, but we can choose how we respond and handle it. Take for example, the time that I had a physical examination with my relatively new primary care physician. They did blood work and I received a report, along with a prescription for a statin due to borderline high cholesterol. As an e-patient, an individual who is equipped, enabled, empowered, and engaged in my health and health care decisions, I looked up credible sources about HDL, LDL, and triglycerides. I read medical articles and plugged in my numbers into free online risk calculators. None of these calculations and articles pointed to the need for a statin, and thus, I felt I had enough evidence to justify my treatment plan.

At my next visit, my primary care physician was surprised to hear that I wasn’t taking the statin he prescribed. I told him I had a few questions and he pulled my lab work, ready to answer them. I asked whether I could try changing diet and increase my physical activity and exercise. He replied that people often say they’ll do those things but then they don’t. I proposed a six-month period to see if I could lower my cholesterol with lifestyle changes, and he agreed. Sure enough, six months later, my lab work showed better numbers and he agreed that I didn’t need a statin. I could have reacted to receiving a mailed prescription differently; I could’ve used humor, reacted negatively, or even changed doctors. But I wanted to take the time to build a relationship and convey my preference to avoid medications unless I absolutely need them. I have found that asking questions is well-received as a first step towards resolving the issue.

Sometimes, however, situations require a little more assertiveness. For me, it helps to know my rights and stay up to date about health literacy and evidence-based practices.

When the first COVID-19 booster shot was made available to people with certain health conditions, I talked to my specialist physician and he printed a letter attesting to my need for a booster (3rd shot). I showed up for my appointment at a local pharmacy, fairly confident that I’d be boosted within a half hour. But the woman behind the counter noted that I was requesting Moderna after getting Pfizer for my first two shots. I knew it was within my rights to mix and match, and when I explained my rationale to my specialist physician, he concurred. I showed my letter and explained that I had discussed this with my doctor, who approved my plan.

Then the woman asked, “Are you taking a TNF-alpha inhibitor?” In that instant, I knew she was questioning whether I should even be eligible for the booster. I replied, truthfully, “No.” Internally, I was thinking I had done everything right, including a signed letter from my physician. As an allied health professional, I knew that she was out of line, inquiring about private health information. But I also knew that she had the power to either facilitate or prohibit the vaccination. I told her, “I’m taking a steroid.” She regarded me and asked, “High-dose?” I nodded and held my breath. Satisfied, she processed my paperwork and gave the pharmacist the clipboard. While I waited, I wondered if others had been denied a booster because of similar circumstances or if other factors had come into play. The woman behind the counter was white and I’m Asian-American. I’d like to think not, but if others didn’t know their rights or how to answer her questions, they may not have received their vaccinations.

To achieve better health equity and reduce health disparities, we need to standardize evidence-based high-quality service delivery and make it easier, not harder, to get the right care to the right person at the right time.

I received my booster shortly thereafter and I found myself recalling the lyrics from “My Shot” in the musical, Hamilton:

“We’re gonna rise up (time to take a shot)

I am not throwin’ away my shot.”

Susan H. Lin, ScD, OTR/L, FAOTA, FACRM,a lifelong member of the Society for Participatory Medicine is a consultant specializing in occupational therapy education and research. She is an affiliate professor in Marymount University’s Center for Optimal Aging and serves on the Patient-Centered Outcomes Research Institute’s (PCORI) Clinical Trials Advisory Panel. Her interests include health and wellness, implementation science, and prevention. Connect with her on Twitter  or LinkedIn.

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