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Learning to Love the Skin You’re in With Hidradenitis Suppurativa (HS)

Loving the skin you’re in, while also living with hidradenitis suppurativa (HS), goes much deeper than just a slogan. It’s more than a social media tagline. Rather, skin-love and self-love with HS is an entire lifestyle.

Living with a painful skin condition like HS is not an easy task, especially when it comes to enjoying your skin … the perceived enemy at times. From the moment of birth, that tender, new-to-the-world skin gets exposed to the air outside of the womb. In that moment, our skin can become susceptible to all sorts of issues, from diaper rash and acne to shingles and conditions like HS. All kinds of other skin conditions can occur at any age, and some are more likely to occur in cis women than cis men (and vice-versa). 

HS is similar, in that it can show up in more demographics than others. It often presents itself in the early twenties, like it did for me, and can last for the rest of your life. Like many conditions, onset and reduction of symptoms can vary depending on the person too. For example, some experienced a reduction of symptoms during menopause, while others have associated HS with hormonal changes.

Even though there is still a lot of research to be done, we have learned so much from other people living with HS. Their bravery in sharing their experiences, with all of the physical, emotional, and mental scars that it can come with HS, has helped many of us feel less alone. Also, let’s give thanks to the dermatologists that chose to specialize in HS treatment. Together the entire HS community makes loving the skin I’m in achievable, even on the harder days.

I have lived with HS for more than 20 years, and I love to share my experiences publicly because I’d like to help others learn to love themselves, just as they’ve helped me learn the same thing. Check out this article about dating with HS or this handy HS toolkit.

Our skin, under “normal” circumstances, endures many things as we scratch those intense itches and compress sensitive areas with extreme temperatures of heating/cooling pads. However, our skin isn’t the enemy, and neither is HS; the enemy are those negative thoughts that can sneak into our minds and hearts about HS. While it can take practice, we must learn to not allow these overwhelming thoughts defeat us. It’s important to remember how to love ourselves and our skin … that same skin that was tender and wrinkly fresh out of the womb, remember? 

Here are three helpful steps to help you feel love toward your skin and the body you’re in:

  1. Practice looking at yourself in the mirror while nude (like after a shower), if you feel comfortable. Tell yourself that neither your skin nor HS are the enemy.
  2. Research and remain up to date of all the latest treatments, happenings, and developments in the world of HS, even if some may feel uncomfortable to read.
  3. View the physical or emotional scars as trophies from the ongoing HS journey that maybe you didn’t sign up for. You’re a warrior!

I know first-hand that living life with HS can be difficult to bear, and I want you to know you’re not alone in it. Between 1 and 4% of the entire population lives with HS, and they’re all rooting for a cure for HS. Until we get there, we must continue to support others on the battlefield with us (and even beyond a cure!). I’m not an expert in HS, but I will continue to do what I can to spread awareness and support for others living with the condition.

If you or someone you know has been diagnosed with HS, I want you to know you are beautiful. You are a champion. You are a Mighty. And you are enough! With some practice, we can all choose to embrace our skin and choose to see our own beauty! Choose to stand up and say with confidence, “HS is just a part of my story. It is not the end all be all.”

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