This is one personal story of being affected by Hidradenitis Suppurativa (HS). If you or anyone you know would like to share your experience, please contact firstname.lastname@example.org. This article is not intended to give medical advice or information, and if you or someone you know is struggling with HS, please seek out available resources or the guidance of a medical professional.
For Jenna Goodroe, getting diagnosed with Hidradenitis Suppurativa (HS) started small, with what she thought was just a few ingrown hairs gone wrong. It took many years and some pretty drastic lifestyle changes to not only arrive at a diagnosis, but a means of healing, too.
“I thought I was just getting ingrown hairs after shaving my armpits, but I would have 5 or 6 of them every single time and I was like, ‘What the heck is going on?’” she explains. “I was a server at the time too, so I did a lot of walking around and sweating, and when I put deodorant on my armpits would burn. I would try to go a little longer without shaving, but that’s obviously really annoying to do when you’re a woman. It kept getting worse, they weren’t going away, and despite my attempts, the few grew into big boils and cysts.”
Anyone struggling with HS knows that having an uncommon skin condition is a really stressful thing. It’s hard to manage long-term, but it’s even harder to get a diagnosis initially, a process that can sometimes take literal years.
Jenna explained that when she first went to a dermatologist, she was told that because of her dark hair, she was more prone to ingrowns, which were simply getting infected. After being given a shot to help with the pain, Jenna was sent home. But the issue didn’t get better. A little while later, Jenna visited another doctor because of how much pain she was in. It was there that she had a breakthrough, albeit in an unusual way.
“A nurse practitioner asked me if I had ever heard of HS. She wrote it down on a piece of paper and told me to look it up, but I didn’t think much about it. I was beginning to eat healthier, which was helping, and didn’t really think to look into it. However, when another grew into a cyst that was obviously infected, I asked a third doctor if it could possibly be HS,” Jenna shared.
However, her conviction didn’t come from the nurse practitioner’s suggestion. It was actually social media that confirmed it for her. At the time, Jenna had been following Cristina Curp, aka @thecastawaykitchen, for nutritional advice. Cristina also has HS, and was talking about it on her feed when Jenna had her “aha!” moment. “I had been following her but I didn’t even make the connection,” Jenna said. “Then she posted something about it and I emailed her and said these are my symptoms and I was like I don’t know what to do I don’t know where to start.”
Eventually, she did follow Cristina’s lead and took on an entirely Paleo diet, which she has attributed to most of her success managing HS. Today, Jenna says that most of her symptoms have cleared up entirely. “I had been Paleo for a few years prior when I didn’t know I had HS, because I had stomach issues and acne and other health issues,” she explained, “and I was researching how the two are connected. I realized I was diagnosed with celiac disease when my armpits started flaring up, and then I found a Paleo diet, and that’s what I do now. I don’t even really get bumps ever.”
Though Jenna’s story did pan out well in the end, it certainly wasn’t an easy road to get there.
Dealing with a skin disorder is tough, especially with friends or partners who might not initially understand. “I would start to smell,” Jenna said of the worst part of dealing with it socially. “I could smell me, even if my friends said they didn’t.” To deal with it, she was really open about the condition, though she isn’t sure that anyone really understood what she was going through. “I told a lot of my friends, but I don’t think they all knew the severity of it. I lived in Utah at the time, and a lot of my friends were in Florida.”
She also said that it sometimes impacted her dating life, particularly when she’d have a really painful flare up. “I was dating a guy at the time and I remember having a really painful bump. I went to stay with him for the weekend, and I didn’t sleep for more than two hours each night because I was in so much pain. I told him about it, and he tried to be supportive, but at the time, neither one of us really knew what was going on.”
Though Jenna has found a holistic way to manage her HS, and says she lives a relatively pain-free and symptom-free life now, it’s clear that it took many years and a lot of learning to get to this point. As for what she’d advise anyone else going through it? Stay aware.
“I would just say to educate yourself… if you go to the doctor and they don’t know what it is, or they don’t know enough about it, they might try to medicate you for something else. Sometimes, the doctors I went to literally didn’t seem to care at all about digging deeper, and at that point, you have to take matters into your own hands and fight for your health,” she said. “Nobody else is going to do it for you, and nobody else is going to care if you don’t.”
Other than that, Jenna said it’s imperative to do your research and make sure you have an incredible support system in place. Reach out to people who have also struggled with it, find support groups and understanding friends, and know that you’re not alone. It’s tough to navigate something that so few people even know about or understand, but it’s never a hopeless situation, especially if you’re committed to finding wellness again.