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How I Took My Self-Esteem Back From Hidradenitis Suppurativa

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Twenty nine years of lust, envy and jealousy over something no one — other than those of us with hidradenitis suppurativa (HS) — could understand. Envy over armpits. I haven’t worn a tank top since I was 11. Twenty nine years of hiding my scarred, abscessed, mangled armpits.

It was just another body part that my HS has taken from me, along with my breasts, groin, thighs, pubic area, stomach, and with it my self-esteem, self-worth, the wonderment of what it would be like to be “normal.”

The longing to wear a white shirt without fear of leaking on it.

Worrying when you see white sheets on a bed.

The hope that an abscess doesn’t burst during the day in your armpits.

Wondering if that’s sweat or drainage.

Praying to God the bridesmaid dress is not sleeveless.

Shopping for summer clothing.

All of struggles that others can’t understand.

Never did I think I would be filling my closet with every tank top I could find, that I wouldn’t care if the bridesmaid dress is sleeveless, that I would be excited for summer and that I would be showing off my new scars in a photo session and proudly putting them on display.

Almost one year ago I had wide excisions of the bilateral axilla (both armpits) with second intent (left open to heal from the inside out). It was one of the most scary decisions I’ve ever had to make and I chose to take a leap of faith and take what little control I had over this disease into my own hands.

Recovery was better than I expected, it’s gruesome, even for me (and I love gross stuff). The healing process was faster than I anticipated and the pain level was much less than you would think looking at the wounds. I made a point of getting out of the house every day and my mom helped me more than I could ever thank her for. I wasn’t able to wash my own hair for a few days and bandage my own wounds for weeks. Every day I would work on my range of motion and continued to test the boundaries of what I could do with my arms.

I went to wound care weekly (at my request) to be sure that I was healing properly. The products they have that help you heal quickly are amazing! Hearing how much growth I had on each wound weekly was exciting, like affirmation that I had made the right decision.

This process has taught me how to allow help from others, which has always been an area of struggle and makes me feel very vulnerable; I am used to being the one helping others and not the one needing help.

I had my mind set before surgery that I was taking control of this disease that had disfigured my body and shredded my self-esteem for 29 years. This was a good and positive thing in my life and was forward momentum for me. I am going to have scars either way, but at least I’m choosing these scars and will not continue to be a victim of HS.

My healing went so well that I opted to go in and have my groin and inner right thigh abscess removed as well, since they were very active and causing me a great deal of pain. My armpits weren’t even fully healed at that time, but I got the green light to move ahead.

This process was a bit different, if I thought I was baring my soul and being vulnerable with my armpits, that had nothing on my groin. It was the equivalent of having your diaper changed as an adult. It took so much longer for me to be able to change the bandage in my groin/thigh as I couldn’t see the area, but again, the outcome physically and emotionally was well worth it.

Today I took photos in a tank top, baring my armpits intentionally. I felt beautiful, soft, fierce, fulfilled, ecstatic, sexy and, most importantly, self-confident, something I’ve struggled with for as long as I can remember. I’ve never felt worthy enough, like HS made me less beautiful or worthy of the kind of love that “normal” people just encounter naturally. It just feels a bit harder for us, we’re either more guarded and don’t allow people in or too easily accepting of any attention that comes our way for fear that it won’t again. Some of us struggle with this and some of us are lucky to find a person, or multiple people throughout our lives. Some are good for us and see our worth, beauty and value and are good partners to us and help us overcome that feeling of not being worthy or enough. Those are the only ones who are worthy of us and all we have to give.

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Our life experiences are different than they are for others. We worry about things that no one else would even think about as a concern like smell, drainage, leaking, scarring, pain, pain and pain. We don’t live the same kind of lives that others do, we’re different. That difference, those things that make us special, are what set us apart. I consider my struggles as positive things in my life. My experiences have made me strong, resilient, funny as hell, positive, rational, determined, empathetic, driven and passionate. I am who I am today because of my HS. I’ve learned to love my experiences and my scars and everything that my HS has taught me. Please don’t misunderstand, as I type this my flare is making me very uncomfortable and I wish nothing more than for it to go away and for my surgery date to come as quickly as possible.

For 28 of the 29 years I’ve had HS, like all of us, we don’t have many choices in our treatment; there are such limited treatment options for this disease. Until last year’s surgery, I felt like I was stuck with the scars and abscesses I had without much hope for a change and was out of choices. Surgery was a choice to take my life back. There was no guarantee that it would work, but if I didn’t take the risk I would never know the possibility of a pain free or pain reduced life.

I have had an amazing year after healing from my wide excisions with so much less pain, so much more confidence, no worries about draining from my armpits, no worries about white sheets, no worry that the flare in my right inner thigh would return with a vengeance and make it difficult to walk, and no worries about wearing a tank top and showing off my mangled armpits. Now I bare my armpits freely and am happy and eager to tell people about my story. I took a chance and took control over what I could; I chose these new scars and I couldn’t be more pleased with my decision. Same disease, different scars.

Getty image via Lyndon Stratford

Originally published: August 21, 2020
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