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  • Alejandra Van Dusen

Representation of Rheumatic Diseases

Like many others, I was extremely moved by the recent release of Selena Gomez’s documentary: My Mind and Me. As Gomez shared her experience with lupus, she provided representation and awareness for the rheumatic disease community. Selena Gomez is not the first person to do so. In fact, Spencer O’Brien, Venus Williams, and Caroline Wozniacki are just a few notable figures who have shared their stories and have become a source of inspiration and relatability for members of our community. Representation of the rheumatic disease community matters, as it has potential to raise awareness, lessen stigma, and empower people living with rheumatic conditions.


One of the first representation moments in my lifetime occurred during the coverage of the 2018 PyeongChang Winter Olympics. While the women’s slopestyle played on the television in the room next to me, the word “arthritis” caught my attention. Was this a commercial for Voltaren? No, this was by far better. After being called into the room to see what was on the television, I became awestruck by the story of Spencer O’Brien: a Canadian olympian with a diagnosis of rheumatoid arthritis. O’Brien’s story of perseverance has empowered countless young athletes, with and without chronic health conditions. Personally, my greatest takeaway from O’Brien’s story is to never set limits on what I believe I can achieve - even in the face of adversity.


By the time I was inspired by O’Briens story, I had already lived with juvenile arthritis for around 14 years. Prior to this, the most I heard about my condition in the media and popular culture was in pharmaceutical commercials, or as the punchline to an unfunny joke. The Winter 2018 Olympics coverage would have been the first time I saw someone on the screen who had that little thing in common with me. Fortunately, it would not be the last.


Last month, My Mind and Me released, providing our community with a powerful and accessible form of representation. For viewers with lived experience, the film confers that unique, positive

feeling that one gets when the person on the big screen is just like them. For viewers without lived experience, the film provides an eye-opening display of the reality of rheumatic diseases. Optimistically, Gomez’s sharing of her story will be an impetus for increased awareness for rheumatic diseases.


A large part of the vitally of representation is how it shapes public perception. Strong representation of rheumatic diseases in popular culture challenges the stereotypical mold of what it means to live with a chronic health condition. The rheumatic disease community is far from monolithic, and the stories of Olympic athletes and actresses alike prove this.


When it comes to representation, the more is the merrier. May the future have various role models and stories in popular culture for young people with rheumatic diseases to look up to.

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