“A few years ago, I had one of my worst surgeries. After it, I struggled with my religion and my sense of purpose. I asked myself, ‘Why is this happening?’ My pastor said, ‘What if your healing is from helping other people who are going through the same thing?’ I liked the sound of that.
When you’re dealing with something like hidradenitis suppurativa (HS), support from other people who have walked the same path is everything. HS is an embarrassing condition. It causes small, painful lumps under the skin. It shows up in areas where you sweat – armpits, breasts, buttocks, groin area, inner thighs. It’s not nice to look at. The lumps are painful, and a foul smell comes out of them when they drain. You wonder who will stand by your side when you’re oozing pus like that. And being in so much pain all the time takes a toll on your mental health. HS affects your pride, your relationships, and your whole life.
It all started when I was 17. I woke up one morning with a lump in my breast, and then it just got worse and worse. I was terrified – I thought it was cancer. The doctors thought it was ulcers, cysts – all kinds of things. I wasn’t formally diagnosed until I was 21.
By that time, it was really bad. Surgery was my only option, and over the years I’ve had 16 major surgeries. I’ve also gone through many antibiotics, topical creams, hormone replacement therapy, and other treatments.
Fortunately, my HS is more under control these days. I’m seeing a great dermatologist and my weight loss journey helped too. But it continues to drastically impact my life. I’m a single mom and a child youth worker, and sometimes I can’t be there for my daughter the way I want to be, like running with her in the park. And when the pain is unmanageable, I miss work anywhere from a few days to weeks which sometimes makes me worry about job security.
Hidradenitis and Me’s slogan states ‘HS doesn’t define who you are – it’s just a part of you.’ I truly believe that. HS drastically affects our lives and makes us feel like we have no control. I want to help other people with HS to take back control of their lives and to thrive.”
.jpg)
