Why I'm Patient With the Physicians-in-Training Who Ask About My Rare Disease

I’m sure like me, many of you have been to enough doctor’s appointments in your lifetime to be able to list your name, birth date, medications, allergies, symptoms and previous procedures in your sleep. I was diagnosed at 9 with limb girdle muscular dystrophy 2D, a rare form I’m told. So I’ve seen a few doctors in my time.

I guess because it’s a rare form of MD, I’ve seen​ a lot of interns and newbie doctors. I can tell who’s been at it for a while or who’s in their first few years. I kinda feel bad for ’em; they’re thrown into a room where they’re given a chart only a few moments before and have to try to get your history, your symptoms, and your vitals while they’re being “graded” on how well they can diagnose/spot your illness before the doctor comes in. They’re trying to work on their doctor/patient skills and go through a computer system that hasn’t been updated in 20 years… it has to be hard. They look so nervous, ya just want to tell them “It’s OK, you’re doing fine honey.” Then you’ll have 5 more come in and ask you the same exact questions.

A funny confession: because of my condition, I don’t have reflexes. Once this newbie was very persistent that I must; he just wasn’t having it. So I kicked my leg a little and he was so happy with himself that he stopped hitting me and was done with his assessment. Shortly after, my longtime doctor came in. He just laughed and told me I couldn’t do that to the new guy, he’s learning and now he’s written down false information in my chart.

Another time I had a young gentleman ask me to get on the floor and get back into my chair by myself. I’m pictured in some journal of medicine somewhere getting up off the floor from years ago, maybe that’s why he asked, but I burst out laughing. I couldn’t help it. I tried to politely tell him I knew I couldn’t get off the floor by myself, so I would not be doing that. He proceeded to say “That’s OK, we’ll help you if you can’t.” I was 16 at the time and only used a push chair to get around in public, but could still get around in my own house by myself because my family knew if the wind blew too fast in my direction, I’d fall. I also knew for a fact I couldn’t get up off that floor, so I didn’t.

I know these doctors are just trying to do their job, going down a checklist of questions they didn’t come up with, so my feeling is “don’t be upset with them.” I try to answer their questions honestly. It took me a little while to understand that. I try to keep my composure even if I’ve been in that little room for two hours answering the same questions over and over. Who knows, one day that inexperienced intern may become a great doctor who helps other children go through what may be their first awkward appointment.

I know it can be hard, but try to have patience. The information they gather from seeing you may one day help another.

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Thinkstock image by Endopack.