How Living With HS Forced Me To Stop Pushing Through Everything

I've had severe eczema since I was young, so it's not like I was unfamiliar with chronic health conditions. But I always had a pretty strong mindset. I thought I could put my body through anything and that it would be fine and wouldn't fail me. Whether it was work stress, long hours, or life in general, I thought my body would always keep up.

Then, around 2020, my body started telling me otherwise. I was in my mid-30s, and around that time, I noticed what I thought was a cyst in my groin area. It would become painful, then seemingly go away. A few months later, it would return. Since it always showed up in the same place, I didn't think much of it at first. Around the same time, I was also at the heaviest weight I'd ever been, and I remember wondering if the two were connected, but I chalked it up to just one of those annoying things that happens as you get older.

Instead, it became the beginning of a months-long journey trying to figure out what was actually going on. I went to a dermatologist. Then another. I went to my OB/GYN. Everyone kept passing me to someone else. Because it was always in the same spot, I assumed it was exactly what everyone else seemed to think it was: a cyst. Looking back, seeing how hard it was to get answers still frustrates me the most. You're told to trust doctors because they're the experts, but I often felt like I was the one chasing them. I kept getting passed from specialist to specialist, and I remember thinking, Why am I the one driving this? By that point, I was ready to have what I thought was a cyst removed. Instead, the surgeon looked at the scarring and said, "I think you have hidradenitis suppurativa." It was ironic, since she didn’t even focus on dermatology.

It's not just the physical symptoms — it's the fact that there are still so many questions, even years after getting diagnosed.

HS is a chronic skin condition that causes painful flare-ups and scarring. I had never even heard of HS before, but after constantly being shuffled between doctors, I finally had a name for what was happening to me. But even now, years later, there are still so many things doctors don't know about HS. Friends ask me what causes it, and I wish I had an answer. There may be a genetic component, but no one in my family has ever officially been diagnosed with HS. The same questions people ask me are often the ones I ask myself.

I think that's part of what I wish people knew about HS. It's not just the physical symptoms — it's the fact that there are still so many questions, even years after getting diagnosed. At the same time, I am also managing severe eczema. My eczema often makes my HS worse, and vice versa, so it feels like my skin is constantly fighting against itself. At least with eczema, there are concrete treatments and creams that help manage it. But with HS, there are still so many unknowns. Dealing with both at the same time, there were moments when I truly felt like my body was failing me.

HS has forced me to accept that I need to pay attention to my body in a way I never used to. I've changed the clothes I wear. I can't wear anything with lace or frills. It has to be the most basic, soft materials, because they can irritate my skin when they rub against it.

My doctors have told me that weight can be a trigger for HS, so managing my health has become a bigger priority for me as I've gotten older. I'm working with a nutritionist and focusing on things like eating more protein, cutting back on carbs and sugar, and building habits that feel sustainable. A lot of these were changes I had already started making before my diagnosis because I simply wanted to be healthier as I’ve gotten older. Luckily, HS hasn't affected my ability to exercise. I still do Pilates and HIIT workouts, which have also become important outlets for managing stress.

Speaking of stress, I have a very, very stressful job. I've been seeing a therapist for some time, and I also work with an executive coach who helps me manage stress, specifically at work. Over the years, I've become more vocal when I need support and have set stronger boundaries to separate my work life from my personal life.

I've also had to become more vigilant about my body’s cues. With HS, you can often feel a flare-up starting before it fully appears. It doesn’t pop up overnight. When that happens, I have to be careful not to touch it, not to do anything that might irritate it, and not to wear clothing that causes friction. It takes a lot of mental energy to constantly think about what could trigger it or make it worse.

These days, there are still moments when I feel like my body is failing me. I still deal with symptoms that no one seems to have clear answers for; there's still so much doctors don't know about why people develop HS in the first place.

I wish doctors had more answers. It took five different doctors before I finally got diagnosed, and I'm still on the journey of finding the right providers who can help me navigate this condition better. Meanwhile, I’ve learned to listen to my body and slow down instead of constantly pushing past what it's trying to tell me. If I’ve learned anything from this experience, it's how important it is to advocate for yourself.

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