This past week I attended a support group meeting for the Tshimologo Association of People Living with Albinism in Botswana. Wow, what a life changing experience. There is a large population of albino patients in Botswana and I care for many of them in my clinic. But a lot of my time and energy had been spent fighting to get them access to more treatment options for their precancers/skin cancers and feeling frustrated that I couldn’t get them to understand how important sun protection is, how they need to use the medications I prescribe to prevent the development of skin cancers, how I need them to follow up with their appointments for excisions of their skin cancers….I hadn’t really taken much time to think about what their day to day lives are like.
Listening to the experiences of my patients was so shocking. I listened to them speak about how the thought of being an albino is so unbearable they refused to accept it. They avoided looking at themselves in the mirror, avoided using sunscreen, avoided using their skin medications or going to the dermatologist because those are the things people with albinism have to do, and they refused to accept that they have a disease. Denial is so much easier than having to think about all the things one needs to do when the sun is basically toxic to your body. When you already look different, its hard to have to stand out even more by wearing a big hat, long sleeves and pants when its blazing hot or applying sunscreen 4 times a day or requesting time off from work to go to the dermatologist every 3 months. It was heartbreaking to hear what they go through every day. How difficult it is for them to feel okay just stepping outside into the public eye every day.
I never knew how important owning your disease is. The first step that I should be taking with any of my patients is making sure they have been able to accept their skin disease. I should be helping them understand that their disease doesn’t define them as a person but is just one small part of who they are – a wonderful and unique person.
What an eye-opener. I am so in awe of what some of these ladies have overcome to get to develop the confidence they have today. My whole approach to my patient will forever be changed!