Published On October 7, 2019
IT WAS A MONDAY. ANOTHER DAY, ANOTHER DOCTOR.
I clenched my jaw in dread. I had been in the ICU again recently, and the upshot of that visit was that I needed to add yet another specialist to my team. But despite more than a decade of first appointments like this, it still gave me butterflies. To calm myself, I ran down the list.
Will she be prepared? Hear me? Communicate? Be a team player? Do I trust her? I was diagnosed 13 years ago with reflex sympathetic dystrophy, also known as complex regional pain syndrome. It was a relief to finally have a name for the agonizing little mysteries that had refused to add up: the purple tint of my foot, the sensitivity to touch that made socks impossible to wear, the ankle that swelled to the size of a basketball, leaving scores of shoes collecting dust in my closet. And of course the pain, burning and relentless.
When the diagnosis came, I thought a remedy was the next stop. But the orthopedist shook his head. I would need to deal with my RSD/CRPS from now on, and he said that the best thing would be to assemble a solid team of medical professionals—a neurologist, a pain management physician and a physical therapist at a minimum—to help me navigate my new life.
It’s daunting to find the people you can trust with your future, but I went out and found them. More complications, including two pulmonary embolisms, meant that my team got even bigger. Through it all, I slowly gained the expertise I would practice today—the ability to figure out what doctors I could work with, which I had come by after learning who I couldn’t work with.
There were the doctors who wouldn’t listen when I shared my concerns and doctors who prescribed medicine I’d already tried and knew wouldn’t work. The shortest appointment was with a doctor who told me she would never see me or speak to me, and all questions should be directed to a nurse practitioner. Her introduction lasted three minutes, and on the fourth I grabbed my crutches and walked out.
Those failures rattled around in my head as I sat there waiting. It’s uncomfortable to be a patient, on an exam table in an ill-fitting gown, waiting to be judged. So to steel myself I had my tool ready—a private, “Team Haunss” physician checklist—which went into motion when the doctor walked through the door.
Is this doctor prepared? This one walked in and smiled, and after introductions she showed me that she had read my chart and knew my tangled, extensive history. She noted the medicines I couldn’t tolerate and the tests I’d already completed. She also knew a lot about RSD/CRPS. Check.
Does this doctor listen? Does she talk to me or down to me? I told her that twice we’d been able to head off a fatal complication because my team listened when I said something was wrong, even when other doctors dismissed me. She said she understood and that my concerns would be heard. Check.
Do I trust her? We talked about a treatment plan and all the moving pieces and professionals it would take to get it right. She made sure I was on board, answered all my questions, and at the end assured me: “We’ll get through this.”
Check, check, check. Internally I heaved a sigh of relief that I wouldn’t have to turn this one down and start from scratch.
“Welcome to the team,” I thought, and walked to my next appointment.
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