But with the hope that this will soon change
All through my life I grew up with not only a lack of positive representation but exclusively negative representation. It felt like every villain/character who was intentionally designed to be disliked often looked a bit like me. This resulted in me fighting for my life to ignore and downplay my condition. To do all I could to not let anyone know or see who I really was. Which of course was impossible.
I’d never really considered how much of an effect this had on me until recently. It’s just another contributing factor to the feeling of isolation growing up. I never saw people like me. I would have without a doubt benefitted from a role model to show me that it was possible to live a full and happy life. And that I didn’t need to believe all those around me who were making me feel worthless.
This has started to change, representation is now a key societal issue and major corporations are getting involved. I’ve seen many people with vitiligo as an example involved in advertising campaigns.
We’ve got to the stage where many people at least have a basic understanding of many conditions, such as autism, this needs to be the same with AD. Skin conditions affect around 900 million people worldwide, around 1 in 7, so it’s crucial society increases its level of understanding.
Lack of education is what often causes these public humiliating moments where (often inadvertently) someone will comment or bring attention to what is a chronic condition. If people understand the depths that people are suffering both physically and psychologically hopefully they'll think twice before making the throwaway remark that cuts like a knife. This could create a world in which AD sufferers don’t have to spend their life walking around with their heads down, shoulders around their ears and anticipating the next comment.
This is a big part of why this advocacy work has felt so liberating. I’m no longer hiding who I am or what I’m suffering with, I’m doing the opposite. As I’ve mentioned previously I’ve always struggled with thoughtlessness from others however bringing it to the forefront and making no attempt to dilute it has allowed others to see the reality.
I’m very excited to be soon involved in helping Eczema Outreach Support who focus on helping children and young people along with their parents/carers. I’m certainly not the most exciting role model in the world and would love to be able to say I’m a fighter pilot or astronaut. I have however achieved things I am proud of; becoming a snowboarding instructor in Canada, married my beautiful wife, built and sold a business etc. To hear this from someone like me when I was younger would have been so beneficial.
We should all continue to apply pressure and encourage businesses and governments to keep expanding representation as they are the ones who will ultimately move the needle.
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