Dispatch #9: The Art of Being a Patient
Once, during COVID, my best friend (also my housemate) and I both got sick. We both went to the same Patient First, at the same time. We had similar symptoms. We were even in neighboring exam rooms and chatted through the walls while we were waiting. When the test results came back, not surprisingly, we had the same diagnosis: flu with bronchitis. But our clinic experiences were very different. I was admitted faster, seen sooner, and received an X-Ray, which Deborah was not offered.
Deborah, who is rarely sick, felt the need to analyze this experience afterwards. What made the difference? Her opinion was that I was simply better at looking sick. She had a point. My cough was not shy. Hers was much less assertive. But I thought the real difference lay in what we had told the receptionists. Deborah had told the lady she had a cold and needed a note from the doctor verifying it wasn’t COVID in order to go back to work. One booth over, I gave another lady a comprehensive list of symptoms. No assumptions.
We, the patients, framed our problems differently. Our community, the healthcare providers, therefore treated our problems differently. This is not unusual. Being a good patient is a skill. It takes experience, practice, awareness and a certain amount of assertiveness. Hospitals and doctor’s offices are staffed with people who are often overwhelmed and suffering from burnout. They cannot read your mind. They also belong to a subculture that has a very definite way of thinking and seeing the world. Like all of us, they sometimes need the information presented in a way that makes sense to them. This is not just about self-advocacy. This is about acknowledging and accepting that as someone with a chronic disease, you are part of a larger community that includes your doctors, nurses, insurance providers and anyone else you rely on for medical care. Support your community—by learning to help them help you.
To the patients that are exhausted and feel that this is not taking their difficulties into account—I hear you. This is meant to be encouragement, not one more standard that you’re not able to meet. The small things matter. You have more control than you think.
To the extent that you are able at a particular point in time (heaven knows that varies!), what are the things you can do to help make things happen? Whether it’s remembering to give your medical record number when requesting a medication refill (yes, that was me!), or responding sympathetically rather than with hostility when an overwhelmed support person makes an honest mistake, you can make a difference in their lives as well as in your own patient experience by learning to see the system as a system, and the people as people. Your meds are supposed to get refilled. Did you verify that happened? Did you follow up with your insurance company to make sure that EEG is covered? Did you make sure the DMV waiver allowing you to drive was signed by your doctor and sent before its deadline? Did you create a pre-appointment checklist or bring notes on things to bring up with your neurologist? Have you been proactive about trying to save money for emergencies? What framing does your neurologist hear? What does he or she not hear? I actually read a medical memoir or two to see things from a doctor’s perspective. It was surprisingly helpful.
We can be creative. We are always capable of more than we think.







