I Have A Rare Disease That Causes Painful Lumps And Scarring. Here’s How I Learned To Love My Skin.

·4 min read
Photo credit:  Starla Kay Mathis/Instagram
Photo credit: Starla Kay Mathis/Instagram

From Women's Health

My name is Starla Kay Mathis, and I am 33 years old. I live in Indianapolis, Indiana, and I am the owner of Mathis Media, my lifestyle blog, and the CEO/Founder of Create. Connect. Collab, a community for women entrepreneurs.

I was in high school, about 16 years old, when I developed what I thought was a horrible rash under my armpits that looked like boils. I was alarmed and informed my grandmother, whom I was living with at the time. We simply wrote it off as a rash that was probably from my deodorant or the underwire in my bra.

But I scratched my armpits until they bled and would often wake up to blood spots on my shirt. The scratching would then lead to deep, open wounds that would bleed even more, and then pus. I would place Band-Aids under my arms to prevent staining my clothing, and eventually, the sores healed into scars.

These outbreaks made me very self-conscious, and I couldn’t understand why they kept happening. I rarely wore sleeveless shirts. My mental health suffered from having these unexplained open wounds, but rather than getting help, I suffered in silence.

Learning I have hidradenitis suppurativa

I didn’t share my skin issues with anyone but my grandmother—not even a doctor—until I was older. Ever since I was a child, my back would break out in acne during the summer months and then go away in the cooler months. I never saw a doctor for that, so I didn’t think I needed to visit a dermatologist about my symptoms.

It wasn’t until a year or so ago when a good friend of mine shared that she had hidradenitis suppurativa (HS), that I realized I struggled with the same condition. HS is an autoimmune disease that causes painful, itchy lumps under the skin that often break open and cause scarring. When I shared my story online, more friends and family members told me that they struggled with it as well. I suddenly felt less alone.

My scars have healed, and the outbreaks have lessened with age, and I learned over time and through research what I need to do when I have a flare-up. I’ve had less than five flares this year, a huge improvement.

Managing my flare-ups

As the years went on, I figured out what helps my skin through trial and error. I started to track what triggered my flare-ups and found a routine and products that work for me.

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For example, I realized that dairy products were a trigger for me, so I went dairy-free. I also became more mindful of what products I use on my skin, especially deodorants. When I’m not having a flare-up, I use a natural aluminum-free deodorant (my favorite is one by Tom’s). But when I have a flare, I use coconut oil, which helps with irritation and conceals odors. I also do my best to eat foods that are good for the skin, such as seafood and nuts.

Learning to embrace my scars

As I’ve gotten older, I have embraced my scars as a part of my story. I’m no longer self-conscious and will wear sleeveless shirts. When I notice someone eyeing my scars I use it as an opportunity to share my HS story. I find that we are all on a journey of self-love and self-acceptance, and as we begin to love ourselves outwardly, the world and its beauty standards can’t deny us.

If you are struggling with HS, know that you are not alone. I discovered ways that helped the healing and eased my flare-ups, and you can too. From lifestyle changes to taking biologics (a type of medication that can help HS), there are things you can do that might help. And remember: There is power in sharing your story. You are beautiful. Your skin is beautiful.

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