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My Daily Life With Hidradenitis Supperativa

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“What’s the cure?” I focused intently on my mother. She looked at my dermatologist, searching her face for a bit of hope.

“Unfortunately, there isn’t one.” The doctor slowly took off her gloves and looked at us. “There’s treatment options, of course. But it will take a while to find what works for you.” She was sweet and kind, and I could tell by the look in her eyes that she wished she didn’t have to deliver this sort of diagnosis.

You see, she had just met me a week before. After being shuffled around between my primary care physician, my gynecologist, and two other dermatologists, I had finally arrived at her clinic. She had the honor or opening up my infected leg, cleaning the wound, packing it, hearing me scream, and causing me the most physical pain I have ever experienced. I was left with an open, raw patch of skin that was so excruciating I didn’t sleep for days, even with the help of narcotics.

And now, after that trauma was over, I was being told this could happen again, that it very likely would happen again.

I was told that I had hidradenitis superitiva (HS).

HS is an auto-immune skin disease that was discovered in 1839. However, doctors still know shockingly little about this dehabilitating condition. Many people, like myself, are misdiagnosed, passed over, or given an incorrect diagnosis resulting in worsening symptoms.

HS effects primarily the underarms, thighs, and breasts. Pus-filled boils form under the skin, tunnel together, and open in wounds that do not heal at a normal rate. When they do, they generally leave behind dark scars. The pain that even the smallest flare can cause is incomparable to anything I’ve ever felt.

The first year after my diagnosis, I was lost on what to do. I moved shortly after my initial diagnosis, and my new dermatologist was convinced I didn’t have HS. I wasn’t given the right treatment and developed more severe flares and scars.

I finally found a good dermatologist, and am on several medications now to control my symptoms. They help some, but unfortunately flares are still a part of my life. Steroid shots, Epsom salt, and pain pills are a regular part of my routine.

Daily life with HS is not a cakewalk. The fatigue that occurs sometimes keeps me down for days. It’s worse when I’m fighting an open, infected flare.

Because of this I had to give up a lot of things: I used to do Crossfit and ballroom dancing… unfortunately now all my energy goes into work and whatever I need to get done at home. I’m typically in bed by 7 p.m. because my energy at that point is completely gone.

The cosmetic side of HS is always difficult. I do often worry that someone will be grossed out or ask hurtful questions. It hasn’t happened often, but it is embarrassing to have to explain why your body appears to be self destructing via large abbesses between your boobs.

Having a social life is difficult. At the end of a workday, I usually go straight home, eat some dinner, and go to sleep. Weekends are for laundry and recharging. Most people don’t understand that the phrase “I’m not gonna be able to make it” or “rain check for next week?” really mean “I’m so exhausted I can’t even get out of bed. I feel guilty. I’m so sorry. It’s not you, it’s me.” I am blessed with a close circle of friends who understand, and a family that supports me and cares for me when I need it.

It’s hard for people to see that I’m sick. My clothes cover up the physical evidence of illness most of the time. It’s difficult to explain to them that a little scar, that little bit of infected skin is enough to rob me of my energy, self confidence, and enthusiasm for life.

Despite the pitfalls of chronic illness, I have discovered that I am much stronger than I ever thought before. I have found who my true friends are, my tribe, who love me through it. I’ve found joy in places I never thought to look.

There’s no cure for HS, not yet, at least.

No cure, but there’s still hope.

And that is enough for me.

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Thinkstock photo by anyaberkut

Originally published: March 28, 2017
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