Being a Professional Patient

I recently read a Vox article about the free patient labor involved in healthcare. This is why I sometimes call myself a Professional Patient: there is knowledge and skill involved, and a lot of time.  I am my own medical home. My long-term chronically ill friends are almost all intelligent, informed, and excellent advocates for and managers of their care. Why? Because doing anything less leads to a "poor outcome."

Yesterday I spent about 1 1/2 hours thinking, researching, calling and emailing just to begin the process of diagnosing and treating a possible endocrine issue (thanks autoimmunity). I emailed my rheumatologist's nurse outlining my symptoms and asking for an endocrinology referral. Online patient portals make this simple action possible: no more calling, being routed by the switchboard, leaving a message that attempts to be coherent, then waiting a day for a reply. I can also email after hours when my thinking is clearer. I heard back that my PCP needs to generate all referrals, so the nurse forwarded my email to the PCP's office. My PCP is out on Fridays, though, so Monday is the earliest this message will be read.

I took a break. Realizing it will take weeks or months to actually see an endocrinologist, I called to schedule with my PCP. Except she's scheduled out for weeks, too. Oh, but her nurse practitioner had availability on Monday! So I see the nurse practitioner Monday, and perhaps will start the testing process then. In the meantime, I walked to the natural market and bought some thyroid calming herbs--maybe I'll get some symptom relief, and it could even be diagnostic. Tinctures taste disgusting, by the way.

The Vox article didn't mention the amazing work being done by nurses, which is a shame. Doctors are important but it's nurses who actually do the majority of the work. They talk to patients between appointments, get referrals, order labs, and smooth over insurance issues. Good nurses know how hard patients work and do their best to help. Hug the nurses, medical assistants and patients in your life.

Since this topic is kind of a bummer, here's a video of ducklings I saw in the park yesterday :)