On Saturday I spoke at a dermatology training conference at my hospital. I gave an updated version of my Appearance Matters speech. (I added bits about going surfing, my thesis result, meeting Jack Oldacres, and time with Rick Guidotti.)
At the start of my speech I joked that this is the first time I have attended a dermatology training conference wearing so many clothes, and I thanked them for that.
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, and I was only able to wear undies, one sock and a blanket. At first it was a novelty, I would charge the doctors a few cents a look. But then it got a little distressing. I was a teenager, not yet comfortable with my changing body, and I was frustrated by the cold environment – physically and emotionally. Not being able to wear clothes, and impersonal consults made for a difficult time. The last conference I took part in was when I was 15. As well as the doctors who examined me, I met a few people with various skin conditions, and that was a real eye opener for me – they were in search of a cure, but also missrable with life. I did not want to be like that. It was an unpleasant experience, and I told Mum that I wanted to leave early. So we did. I felt the doctors only wanted to get to know my condition, and not me as a person. I felt like a zoo exhibit. Dare I say it – I felt a little exploited.
When my dermatology geneticist invited me to a training day in October, she gave me the option of being a patient or a speaker. I immediately said I wanted to be a speaker. Good, she said, that will change the power balance of me as a patient.
It was strange being in a different role to a patient. While my dermatology team are fantastic and most realise I know as much about my condition as they do, and respect my medical choices, there is always that superior/subordinate relationship between us. The head dermatologist, a doctor I have been seeing for 24 years, walked me to the lecture theatre, and he was so thankful, so proud of me for doing this speech.
Before the conference, I chatted with dermatologists that had seen me over the years. We talked about my trip. There was little talk about skin.
And then I did my speech. I spoke in front of around 40 doctors. They were so receptive, and they got some laughs out of my speech too. It was not clinical, it was personal. It was a great feeling.
I am always going to be a patient. That is inevitable. But when I did my speech, the roles had shifted, and I was a teacher.
If you would like me to do a speech for you, shoot me an email.
I love this. I can't quite articulate it, but it shows that the work of disability/chronic illness activists is paying dividends by people's lived experiences being prioritised and recognised as key to treatment and management of their conditions.
Fantastic work Carly! I'm sure that many of those doctor's patients will benefit from what they learned from you.
The power of your speech is that 40 doctors will now reconsider how they view their patients, even if subtly and slowly, because you the person came first as you talked! Your humour and (I am sure) delivery made them remember the individual before the details of those texts books and journals they review and study. They will remember the laughs they had with you, you the amazing person, and that will translate to their next consult.
Well done! You are really changing the face of disability/chronic illness in so many ways!
Well done Carly – very brave of you to make the change from patient to teacher – bet they all learnt a thing or two!
Great to hear. Here in Sweden I've never heard of a doctors conference that have "real" study objects, only photos. I can understand that it wasn't comfortable, but you really helped them to understand (at least I hope so). Feel proud of what you do for us with NS around the world <3 /Maria, Sweden
Carly – you're awesome. The fact that you stood up as a person and spoke is so powerful. Doctors keep treating 'patients' and not people, and you having a voice is so important. You're taking the power back. Of course you felt exploited as a teenager. I've read so many papers where patients ceased study after a number of years because they weren't treated with any sensitivity over such a sensitive time, during adolescence.
Treatment is not just about the drugs – it's about the whole person. I'm just in awe that you could speak on a podium. I'm crap in front of a panel of three, as evidenced by a disastrous interview a few days ago. Public speaking 'aint my thing. Love your blog. I'm bookmarking!
It is an interesting blog to find some real people and their issues. Keep the good work.
by Clinical Dermatology Houston
That's the spirit. This greatly affects the mindset of many with regards to how the doctors see patients. Maybe your dermatologist was touched and was so proud of you.
Good opportunity to be with dermatologist. Soon you'll be one of them and great speaker. Good job! Keep it up!