“Nothing gets your attention faster than a huge, painful boil in your groin. Let me tell you from experience. I’d been dealing with these gross bumps and lesions under my armpits and such for a while, and not really worrying about them, until they migrated below the belt, at which point it went to the top of my list of medical concerns. ⠀
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Unfortunately, the list wasn’t a short one. I was diagnosed with hidradenitis suppurativa (HS) as the cause of the boils, but I was also diagnosed with SAPHO syndrome, another condition that messes with my life in a bunch of other ways. So, I’m not a typical HS patient, but the more I meet and talk with other people with the disease, the more I realize that there isn’t really a typical HS patient. We’re all weird in our own ways.⠀
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Part of my way of being weird is that I always need to find new ways to express and communicate. So, I’ve taken all this pain that my health has caused me and I’ve channelled it into photography, into writing about HS, and even into music in the form of HS parody songs. ‘Royals’ by Lorde becomes ‘Boils’ when I perform it at the spoken word night hosted by the Hidradenitis and Me support group.
I know that there can be a lot of hurt and a lot of ugly in life, and I try to capture things of beauty and joy in order to counterbalance it. It helps to keep me focused on what’s important and valuable when I’m in the midst of the challenges I face every day. And there are a lot of challenges. I’m only in my forties and walk with a cane. I have to trade back and forth with my father, who’s living with stage 4 cancer, on who’s taking care of whom.
By the same token, though, I’ve met so many incredible people specifically because I’m sick. So, though my creativity is really a coping mechanism for me — a way of staying sane — I like to think thatI also help to raise awareness, raise spirits, and combat isolation when I share what I’ve made.” ⠀
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