I've been a hospital patient for all of my life. It used to be that the doctors only provided me with advice on how to manage my skin condition. They prescribed me medications and creams for infections, and admitted me to hospital when I got very sick. Even though I've been very vocal about my treatment, and even though I know my condition very well, they've always led the conversations in the consultation room.
I became a teacher
In recent years, my role as a patient has changed. I've become a teacher of these doctors. My senior doctors have asked me to be a guest at their training classes. I've given speeches to young dermatologists and geneticists about what it's like to live with my skin condition. I've talked to them about the social aspects, my challenges and achievements, and about resilience. My story is something they may not get in their text books, and patients in the ward may not feel comfortable disclosing so much about their lives to new doctors.
These new doctors have responded very well to me. I have seen some of them when I have gone to an appointment at the hospital. They've thanked me for my talk, and for making them laugh! I even bumped into one of them when I was out seeing a band – such are the joys of being easily recognised!
However, I'm not a stranger to teaching doctors about rare skin conditions. It started when I was six years old.
When I was younger I attended a few conferences where up to 200 doctors would look at me. Many did not speak to me, or did not speak English. I was only able to wear undies, one sock and a blanket. At first it was a novelty, and I would charge the doctors a few cents a look. But when I was a teenager, and not yet comfortable with my changing body, it got a little distressing. I was frustrated, physically and emotionally, by the cold environment. Not being able to wear clothes, and the impersonal consultation, made for a difficult time.
The last conference
The last conference in which I took part was when I was 15. As well as the doctors who examined me, I met a few people with various skin conditions. That was a real eye opener for me – they were in search of a cure, but were also miserable with their lives.
I did not want to be like that. My last conference was an unpleasant experience, and I told Mum that I wanted to leave early, and so we did. I felt the doctors only wanted to get to know my condition, and not me as a person. I felt like an exhibit at the zoo, and a little exploited.
I become more empowered as a patient by becoming a teacher at the front of a class rather than on a hospital bed. These hospital talks have led to guest lecturing to a class of medical students. I was so proud to join my geneticist in the lecture hall to talk about media and genetics, and how I have chosen to tell my own story through blogging.
If you want to play more of a part in educating young doctors and nurses about your disability, I encourage you to ask questions of your senior doctors about how you can get involved. It's a great feeling to be a part of a doctor's education. Not all of their learning comes from a textbook!