I will always remember the day when I was diagnosed with hidradenitis suppurativa (HS). I was sitting in an exam room at an urgent care in a small town. This was my fourth visit to either the urgent care or ER. My right arm and armpit were black and blue, and there was a boil and an open lesion. Other doctors weren’t able to diagnose me. Tests came back negative.
The doctor walked in, asked me some questions, examined me, and then handed me a brochure. “I believe you have HS. Here is a brochure that can give some more information. I don’t really know much about the disease. I suggest you find a dermatologist.” I was filled with relief. I finally had a diagnosis.
I rushed home and immediately started to do some research. To my surprise, I found very little information. I called and scheduled an appointment with my dermatologist. Little did I know, she would be the first of many doctors I saw over the years.
I went into my appointment filled with hope. I couldn’t wait to take some meds and get back to normal. Instead, what I found was a doctor who didn’t know any more about the disease than I did. She put me on a course of antibiotics, which I expected to work.
But they didn’t work, even after four rounds of different ones. I looked for another dermatologist. I made more calls than I could count on two hands. Most of them had never heard of HS or claimed they did, but upon meeting them, it was clear they didn’t. I then found a dermatologist three hours away who was supposedly very knowledgeable about HS. And it turns out he knew more about it than any previous doctor. But his bedside manner was terrible. At one point, he told me that he didn’t have any older patients with HS. He then joked that it could be because they die early. Not what I wanted to hear.
I fell into a deep depression. Months later, I moved to Chicago temporarily for a job and found a dermatologist at one of the top hospitals in the city. She examined me and offered some treatment options. She was also the one who told me that the scarring is permanent and that my arms would never look the same. I burst into tears. Up until this point, I believed I could reverse the disease’s effects, and no doctor told me differently. I left the office and never returned. I went into denial and stopped looking for treatments. I gave up. I accepted that I was going to always be sick and would die early.
After my job ended, I headed to LA. I always felt better in drier climates (the humidity caused me to sweat more, which caused me to have flare-ups all over) and needed to heal after months of deep depression and anxiety. I figured having sunshine all year might help.
As soon as I arrived, I looked for a dermatologist. I felt hopeful again. LA was home to many innovative hospitals and treatments. I was sure I would find someone to help. And I did find a compassionate dermatologist who really listened to me. For the first time, I felt like a doctor was looking out for me. She recommended treatments that I hadn’t heard of.
But after two years, we ran into a dead end. At this point, I had subscribed to Google Scholar to keep up with any research on HS (spoiler alert: there wasn’t much). Every time I saw something, I would email it to her to discuss at our next appointment. But it didn’t matter much. Most of these treatments were still early in development or were just starting clinical trials.
On a whim, my mom and I did an online search to see if any new treatment centers or specialists had popped up in the last few years. We searched for hours before discovering new clinics listed on the Hidradenitis Suppurativa Foundation’s website. Even more exciting, there was an HS clinic right here in LA as part of UCLA. I immediately called and made an appointment.
As I headed into the office, I was cautiously optimistic as I’d been let down before. But when the doctor greeted me, I knew I was in great hands. We talked about everything I had tried up until this point. She then spent time examining me. She was so confident and knowledgeable. I was in awe. We spoke at great length about new medications and treatments. I finally found someone who has studied this disease extensively and is up-to-date on all of the latest research. In all honesty, she saved my life. I wouldn’t be here without her. I feel like I have a team behind me. I know that even if a treatment option doesn’t work, there are others. She is not even close to giving up on me, which means I’m not either. Here’s to hopefully putting this disease in remission.
Having HS has forced me to learn how to advocate for myself and to move on from doctors when I feel like they can no longer help me. Looking back, I shouldn’t have made an appointment with any doctor who didn’t know what HS was. I also refuse to work with doctors who have terrible bedside manners. Having a chronic illness takes a lot of you mentally and physically, which is why it’s important to be surrounded by compassionate, knowledgeable individuals. If you’re feeling stuck, I encourage you to keep looking. Great doctors are out there, I promise. There are also some wonderful communities and resources online for HS warriors.