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No Regrets Dating With Hidradenitis Suppurativa

As if dating isn’t complicated enough, it’s even more difficult as a woman living with HIV. But when you add a disease like hidradenitis suppurativa (HS) to the mix, the dating scene can even be more frightful. HS is an inflammatory, chronic skin condition that presents with boil-type nodules in areas of the body where sweat glands reside — in other words, some of the most intimate spots. To best describe the emotional toll that HS has taken on my dating life, I decided to share a letter that I wrote to my HS.

Dear HS,

Like most, I didn’t know what I was in for at the beginning of our relationship. I admit — there is a bit of regret. You came into my life during my early adult years, a time when I was still getting to know my body. You were just being you, showing up whenever you pleased, often with no invite. As we got to know one another, you noticed the areas where I could feel your presence the most — my armpits, under my breasts, my inner thighs, my buttocks and my female frontal area. Ouch! How dare you invade my precious temple! I never knew something could be so cruel.

When I met my first boo, around the same time as when you arrived, it wasn’t my intention to be involved with you both at the same time. I wanted to be faithful to my love, but you wouldn’t go away. Despite my many efforts to get rid of you with hot towel compresses and peroxide baths, you stayed and laughed, as they did nothing but provoke you. I had no idea what I was dealing with. Now after many years, I’ve come to understand you were just being you — a rude, infectious, smelly and horrifically painful condition.

My mental health took a dive too as I was already feeling low self-esteem coming into my womanhood. You made me feel like a cheater, a liar. Over time, in and out of relationships, there were times when I wanted to be touched and couldn’t because it was just too painful. There were times I wanted my intimate partners to lay next to me, but I made excuses to chill on the couch alone because of the smell. I must have lied about having my monthly cycle more times in a month than humanly possible. I became good at lying, something I’m not particularly proud to admit. 

It wasn’t easy then, and it’s not easy now. Although, I’ve learned to let bygones be bygones and forgave myself for my own self-deceit. I have learned to forgive you too. I forgive you for just being you. I forgive you for bringing out the worst in me. There were emotions no young person should experience so early in life, especially when it comes to dating.

My previous partners had no clue of the tangle you and I share. I hid the scars, masked the odor with various fragrances and made excuse after excuse as to why my body couldn’t be caressed in all the right places. The slow act of sitting down wasn’t a dramatic effect; it was because it hurt my bottom to sit through movies or at our favorite restaurants. The discomfort of riding in the car was a total nightmare. I often suffered in silence, with my body parts muffled by sterile gauze glazed with anti-bacterial ointment. This all results in feelings of guilt, shame and deceit. Why couldn’t I just confess our affair with my partners? I don’t know. 

Hydra, you overwhelmed me, and it took a significant toll on my mental health. It took many years of questions and misdiagnoses to finally have answers and peace in my life. But even then, HIV and you were playmates in my body. However my scars, both physical and emotional, have become my trophies of survival.

More recently, I live a life of celibacy. I rid the weight of you on my shoulders and my heart. I am thankful for having loved and been loved. I’m grateful for my experiences of lovemaking. You made me realize how beautiful and worthy I am, despite your destructive behavior. I can only pray that science finds a solution to alleviate others’ pain and challenges and cure you all together. My flares are few and far between now; although I’m not entirely sure what caused you to bring your attention elsewhere, I’m not complaining.

Hydra, you have taught me many lessons throughout our relationship — necessary lessons. I share my story about our affair only to encourage others to keep going. Keep living, loving and learning. We CAN manage you. We ARE worthy of being loved. WE ARE ENOUGH. 


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