I have never really been a joiner. Support groups and alumni associations never did anything for me. I didn’t feel like sharing with anyone except people I already knew pretty well.
That worked for me for about 38 years.
The Invite
This all changed in 2015. The provider I’m closest to, Dr. Stephen Clement, asked me to participate in a guest lecture he gave at Georgetown Medical School. Why not? I would be the ‘patient interview’ part, telling students about my background and then opening the floor for questions from the students.
As the date of the lecture approached, I made the mistake of asking for more details. The big day would consist of:
Dr. Clement would give a lecture for the first half, there would be a five-minute break, and then I would give a short intro. After that it would be up to the students to ask whatever they wanted. Sounded good.
It would be the students’ first interaction with a patient. Oh, ok. That made it a little more serious than I was thinking.
Oh, and it was a mandatory class that couldn’t be recorded because that would violate my HIPAA protections*, so there would be 400 mostly first-year students listening to my every word. Wait, what? I thought it was going to be more like my undergrad, or even grad school classes for that matter – about 20-25 people. This is a big deal for me; I am not a huge fan of public speaking.
The Interview
Hmmm. What to do now? This was not at all what I expected, and I was a little freaked out.
Considering how picky I was about my providers, and how my provider network made me feel secure even when my conditions were out of control, this patient interview was actually much more important than I had first thought. If I wanted to communicate how important their future careers would be to their future patients, I was going to have to bare my soul.
Which meant the only way to do it right was to make it no holds barred. These future providers needed to be able to ask whatever popped into their minds, even the uncomfortable questions that were scary or embarrassed the asker. Or the askee. Or both.
I started to prepare my little intro, trying to decide what it was important to share and what could be skipped. I ended up with three pages of notes, and my “intro” took up way too much of the time allotted. (Sorry first-year Georgetown Med students of 2015!) At least Dr. Clement sat with me so I wasn’t on the stage all by myself. I was so nervous, I could hear my voice shaking because of the adrenaline rush.
I’m not sure it was good or bad, but I didn’t know 400 students could be so quiet. Once I was done, they asked me good questions. The one I remember most clearly was when one guy close to the front asked me how I thought I would die. For the record, kidney failure or heart disease, but it was exactly the kind of question I wanted them to ask.
Afterward
I hadn’t really thought about how the interview would affect me or the students.
Afterward, I felt relieved and relaxed. The adrenaline had receded and I could speak in a normal voice again. I was also proud of myself – I shared some of the most intimate things about me with a room full of strangers. Keeping everything that had happened to me safe in my head in was incredibly stressful. Suppressing 35 years of feelings about it was incredibly unhealthy. I had revealed some things on that stage that only my psychologist had heard before. Sharing had taken away the fear that if people knew everything, or at least the worst of it, I would become some kind of freak. That’s not how the students looked at me. They were simply appreciative and curious. I appreciated both. Maybe I had helped some of them by sharing my experience and perspective. I hoped so.
Completely counter to my innate need for privacy, I offered to come back next year. It was important to help the students become the kind of providers that would work with patients as equals. It would be good for me, too.
Every year, it’s amazing to hear in what direction the students’ questions will take the class, and I am grateful to Georgetown and Dr. Clement for inviting me back every year. The first year, they focused a lot on behavior and serious impacts of chronic conditions. Last year, we talked a lot about the psychology behind my behavior. This year we also talked about the impact of nutrition and faith, as well as my day-to-day routine. But every year, they always ask me what makes a good doctor, how they could have helped me when I wasn’t doing well. I love that they ask me that. (Sadly, the answer is that sometimes a doctor just has to accept that there is nothing they can do until the patient is ready to be helped. Maybe just let us know that the nonjudgmental door will always be open.)
I thought I knew myself pretty well before that first interview. But, I changed that day. I opened up and saw that I could do some good just by telling my story. I started thinking that if I could have a positive influence on soon-to-be providers, maybe I could help patients—people like me – have the kind of provider relationships that I have with Dr. Clement and my other providers. Eighteen months later, I started this blog.
*Not that I minded if they talked about my interview outside of class, but it wouldn’t hurt if they started getting used to HIPAA restrictions in their first year.