As I sit here soaking in a hot Epsom salt bath for the third time this week, I’ve been contemplating the best way to explain how I, or anyone, handles living with Hidradenitis Suppurativa. The truth is, I’m simply focused on surviving one day at a time, and I have been for the last 14 years.
HS has proven to be the ultimate rollercoaster in my life. Starting at age 13 with just a couple of abscesses here and there, the disease got worse and more excruciating every year afterwards. It wasn’t until age 24 that I was finally referred to a dermatologist who gave my condition a name: Hidradenitis Suppurativa, and then another word I hoped I’d never hear: incurable. With this word I knew I was stuck with this disease. What could I do?
Just two short years afterwards, I booked a headshot session with a photographer named CanDee Butler, to update my acting portfolio. After the session was complete, she asked me if I had ever thought about modeling. What?! Of course not! My skin condition made me feel ugly and disgusting even on the days I looked my best. Luckily for me, this photographer did not see me the same way. She invited me to a “meet up” photoshoot that she was going to the following month, where several models and photographers would all get together for a few hours. While I was obviously very reluctant, she wouldn’t take no for an answer.
The day of the photoshoot, I was so nervous. It was much too hot outside to be in anything with sleeves and I fully expected to see grossed out facial expressions whenever someone saw me. Instead, the day went in quite the opposite direction. By the end, I had several business cards from photographers who wanted to shoot with me again, four photographers in front of me at a time wanting to take photos, and a huge boost in confidence.
Over the next year, I had at least one or two photoshoots every week. Each time, I would let the photographer know about my condition ahead of time and to my surprise, not a single one of them cared.
This experience was the start of a new journey for me, one in which I would seek new ways to find happiness despite the pain I was in. I started to focus on cutting down negativity in all areas of my life; finding a positive comeback to combat every negative statement that went through my head. I urged myself to stop being embarrassed of my disease and, instead, to start talking about it. Most importantly, I made the decision that no matter how much pain I was in, I was not going to let it hold me back from my goals.
Now, this is far from an easy feat. Even as I write this, I am currently experiencing the worst flare up I’ve ever had (hence the bath). I walk, sit, and stand through each moment of my life in terrible pain, with gauze pads and ointment and soft pants. Today, I’ve broken down into tears three times already, just begging God for a small break. I am currently in a musical and later tonight, I will have to dance through this pain as well. Tomorrow, I will be waitressing and running around at full speed taking care of guests while trying to fight through every step.
HS is an unpredictable disease, but here are two things I do know:
Though it will be painful and emotionally taxing, I will continue to push through each day to fight for my dreams, even if I am fighting through tear filled eyes.
I will be okay.
For those of you who are struggling too – stay strong, my friends. Remember that your skin does not define your beauty and keep fighting for what you love. We will get through this.