CMD has given me many things throughout my life: A wonderful community and the ability to play wheelchair hockey are at the top of the list. It’s also given me a lot of experience in doctor’s offices! A few weeks ago, I had the opportunity to put that knowledge to good use. I was hired for three days to work as a Standardized Patient at Temple University’s medical school as part of a module they were doing with second-year medical students about patients with disabilities.
Every afternoon, I logged in to Zoom and assumed the role of a young professional who was experiencing headaches. A professor watched as the students asked me questions about the headaches and then proceeded to take my medical history. Most of my fake identity’s answers were exactly as I would answer them in real life for added realism. We only made minimal changes for privacy and convenience.
The purpose of this interview was for the students to learn how to get relevant information about CMD while not focusing on it. After all, the person I was playing was visiting this doctor’s office for headaches, not because of CMD! Some effects of CMD may be relevant, but as they asked initial questions it became clear that this was an independent occurrence. I’m sure that many of us in the rare disease community have experienced doctors getting overly hung up on our use of a wheelchair, ventilator, or other assistive devices. I know I have.
I was really grateful to Temple for doing this program (I’m sure other medical schools do as well but I’m only familiar with Temple’s). I’d like to think that the students learned a bit from my expertise. After they finished up doing the interview, I along with the observing professor gave each student feedback on their performance. A few times, they got to ask me questions out-of-character. Some of these were about CMD specifically, since it’s a rare disease that they weren’t familiar with so early in their education.
Most of the questions were more general. They were curious about positive and negative experiences that I had had with doctors and medical profession. I told them my diagnosis at a young age and we talked a lot about how I’ve interacted with doctors in the past.
I explained that I have a rare disease, and if I’m going to a new doctor’s office, I don’t expect them to know anything about it. Instead, I expect them to ask (relevant) questions and trust the answers that I provide. This is particularly true when I plan for that appointment to be the first of many. In order to have a long-term connection with a doctor, I want a partnership to be established early on. Yes, a doctor went to medical school and knows more about the human body than I do generally speaking. But I know more about CMD, and my body’s needs.
I explained that the best experiences I’ve had with doctors are when they try to really understand my CMD as well as my needs. They don’t need to dig deep into every facet of my disability every time, because I will be able to explain any changes from my own baseline. For example, my respiratory function is bad but it’s relatively stable. While it’s important that my doctors are aware of my ventilator, I don’t necessarily need my settings evaluated at each appointment. I always prefer to see doctors that appreciate and respect my expertise instead of doctors who don’t put in the effort to treat me as a patient.
The medical students asked me a lot of great questions, and they seemed to appreciate this experience. I obviously don’t know how many of them internalized what I was saying, but I’m hoping that I got through to some of them. This is a program that will run annually, so I’ll be back at Temple next year unless something changes. What advice would you give medical students in a setting like this? I’d be eager to hear any thoughts from the community.