Hello, my name is Laura and I’m a 25 year old woman who has been living with HS for over a decade. HS is a messy and ugly condition, and it makes you feel messy and ugly as well. Differentiating between you and your condition is a battle in itself, one that I fight every morning in the mirror.
This is my story.
I developed HS when I was around 11, but waited until I was 14 before telling my doctor, who immediately referred me to a dermatologist. He gave me the HS diagnosis and kept emphasizing that there is no cure, and that it will get worse over time. It put HS in such a negative light that I didn’t bring it up again with anyone for another 3 years.
Around the age of 17 or 18, I began getting golf ball size cysts in my armpits. I had no option but to go to the Emergency Room to get them lanced. Going to the ER to get the cysts drained often was the only source of relief I could get, however short it lasted. I’ve tried a number of birth control pills that were supposed to target the hormone imbalance that is associated with HS. One type though made me sick for nearly a year, and my skin remained unchanged.
After I began working, it did not take long to recognize some of the HS triggers. I was working at a Residential Overnight Camp for youth. It is a physically demanding job involving running, jumping, hiking, archery, swimming, kayaking, canoeing, and high ropes. Most people see these activities as exciting and fun, but as the summer and the heat progressed I began to realize that HS had given me some limitations. Heat is a trigger for HS symptoms, and that combined with the physical activity and constant exposure to bacteria made it nearly unbearable.
I was very insecure and ignored my condition, often leaving giant open wounds untreated. It was easier to deal with the pain then the embarrassment of talking to someone about it. I would work until I couldn’t stand the pain anymore, then call in sick the following day. I struggle with balancing my health and my reliability at work, feeling misjudged by both employers and my coworkers. For a long time, my biggest challenge was keeping my HS a secret. My family knew that I had some issues with my skin, but we all made jokes and laughed it off. I was too embarrassed to show them how bad the condition had become.
Those closest to me realized over time the severity of my condition. The turning point was 7 years ago when I moved away for university. It was so stressful that I wound up with one of my worst breakouts ever. I called home in tears; panicked, depressed, and in a lot of pain.
Although a very dark time for me, it gave my parents a glimpse of what HS was really like for me. For my part, for the first time I was able to talk openly about my experience. My family gained a much needed understanding of my condition, and I realized just how supportive my loved ones are.
My HS wasn’t a joke anymore, my experience was real, it was important and my struggle was recognized.
If I never had HS, I think I would have much more confidence now. I have missed trying out for some sports, or going to certain places or events because of HS. My job prospects are limited because I have to consider what a typical day would look like, and if I can handle the activities during a flare up.
Most days I feel as if I am wearing a suit that is swarming with a hundred angry bees. Some days, I can take the suit off and soak in a hot bath for a few hours. On other days though, I can’t seem to even loosen the cuffs and have no choice but to smile through the pain.
The online community is not exactly overflowing with people, but it is a helpful support and the members are the salt of the earth. I have reached out to many people, and they are often willing to talk about different treatments. Two years ago, I made the decision to undergo a surgical excision on both arm pits. I recovered after a week or two, and would have surgery again in a heartbeat. Words cannot express how great it feels to wear a tank top again, or pick up any object I need to, or just throw my hands up in the air!
Unfortunately I moved provinces since my surgery. While my armpits have improved, other areas have been significantly affected. I am searching everywhere to find a surgeon in my new province. Those with HS know that it is difficult to convince some doctors that this is your “norm” and surgery is necessary.
I have to emphasize the emotional toll it takes when you have to shamefully explain to your partner what your condition is. At first, you see the mistrust in their eyes and watch the thoughts cross their mind; “I’ve never heard of it before, she can’t even pronounce it, is it a STD? Are you sure it’s not contagious?”
Though HS has made its mark on my romantic life, I have been fortunate to find someone to love me “Bumps and Lumps and All” or so he likes to say on my bad days.
The number one thing a person newly diagnosed with HS needs is a strong emotional support system. Without the love of my family, friends, and my partner I would be living in the shadows of my life, nursing my wounds. I feel that they have given me the confidence to seek help for my HS, and to embrace it as part of my life.