Over the last few months, I have been working on a Building Trust Initiative with the American Board of Internal Medicine Foundation. In conjunction with ABIMF, this month I will be addressing the ways that trust, or lack thereof, can impact health and healthcare. Please take a moment to view a video I recorded with them on this subject.
Formative years are called that for a reason. My formative years were chock full of medical experiences. When I was young, trust was unconscious. I did not think about the role that providers played. That was my parents’ job. I was just supposed to follow directions and do my exercises and go to my appointments. The meningitis and resulting seizures, bumping into walls, and paralysis eventually passed, and later I would realize that my acute illness had gone unusually well. I had come out of it as normal as was possible. The doctors, nurses, and therapists, both occupational and physical, had been wonderful. They were my friends and worked almost as hard as I did to make me healthy. That’s all I knew. That’s all I had to know.
Things were different for the diabetes diagnosis. When my mom went to my pediatrician and told him I was drinking 20 glasses of water a day, this man, who had saved my life eight years ago, asked how big the glasses were. What did it matter? He didn’t believe it was a problem.
I had dramatic weight loss even though I was snacking on leftovers meant for the next day’s dinner (about 5,000 calories a day), and you could set a watch by when I had to pee. These are all the most common symptoms of Type I diabetes, but it took my mom demanding labs to get a diagnosis. (I told her I was too tired to go to school despite my regular 14 hours of sleep, and she said, “Not in my house, you’re not.)
After diagnosis, I was sent to the only doctor in the city who treated juvenile diabetics. He wasn’t an endocrinologist; he had just developed the practice. This person used to send me out of the room to discuss my treatment with my parents. I was 14, and this behavior would have been inappropriate even if I hadn’t had my medical history. But I did, so I was overly medically educated, and this provider’s actions, such as putting me on a 2500 calorie diet and refusing to take me off it, fueled my mistrust and the rage that came from being stuck with this serious condition even though I had already paid my medical dues. He ended up treating me right into six years of non-compliance and an eating disorder. It didn’t help that he gaslit me about gastrointestinal problems shortly after diagnosis. I had to go to my mom’s GI (she had Crohn’s) to find out that 18 months of undiagnosed diabetes had stripped all the flora and fauna from my system. He recognized the problem right away and his treatment cleared it up in 10 days.
During the same period, my parents tried everything they could think of to help me. They sent me to psychologists and eventually to a Joslin-trained endocrinologist, but after learning that I could tell the psychologist what he wanted to hear and make everyone but my body happy with the illusion that I was changing, I was not ready to let the new endocrinologist help me. By the time I was scared into compliance by the development of peripheral neuropathy and retinopathy, I was in no mindset to trust a provider ever again.
Nevertheless, I couldn’t go through life without providers. I needed someone to keep me up to date on labs and prescriptions. I figured I could figure out the rest myself. But this time I would pick.
Six months before I graduated from college, I was home watching the local news and I saw an endocrinologist on TV. He was talking about the inhaler insulin, which wasn’t even FDA-approved yet. I figured, at least he knows about the latest research. He would be a good doctor to go to.
I went in with a completely defensive posture. We were barely past greetings when I told him that I was going to be a terrible patient. I wasn’t going to listen, and I was going to self-medicate, but I still needed someone to run the medical s---show that was my life. He looked at me and just said, “OK.” I was a little stunned. How can you war with someone when they don’t engage?
Turns out it was a gift. He was my first provider as an adult. He was also my first pick, although I see now that my selection process had been a little dubious. He was non-judgmental and willing to include me in treatment decisions long before shared decision-making was a thing. I used to cancel appointments because my numbers weren’t where I wanted them to be, and he was the first one to roll his eyes and say that is exactly when I should come in because that was when I needed the most help.
Almost irreparably damaged trust started to regenerate as that patient-provider relationship developed. It took a while, but not getting yelled at or rejected when I didn’t follow directions grew my confidence and allowed me to become more assertive and more driven to learn about my conditions. The more I learned, the more I could participate in my own care. The more comfortable I got in the relationship, the more I understood what I wanted from other providers and what I didn’t.
That one relationship empowered me, and nearly all my subsequent provider relationships have stemmed from referrals by this provider. Even the ones that don’t quickly follow the blueprint of the first one.
I’m not sure where I would be if it hadn’t been for that one ahead-of-his-time provider. My formative medical experiences almost did me in. If that first pick had been the wrong one, or even a neutral one, my mistrust might have finished the job. But being able to trust a provider for the first time, and independently (not influenced by a child’s view or parents), allowed me to grow beyond the constraints of my formative years, to be fluid and to create a safe place to land when I need one.
Formative doesn’t always have to be final.