For Selina Ferragamo, being diagnosed with Hidradenitis Suppurativa was not a straightforward task.
The 25-year-old native Long Islander, who is currently a student and graphic artist, first started getting symptoms around 10th grade. “The flares would come and go away on their own, so I thought it was just razor bumps,” she explained. “Eventually, the flares also started in my armpits and getting bigger and more frequent. That’s when I started thinking that maybe something more was happening than it just being razor bumps.”
Being diagnosed was “extremely difficult,” Selina says.
At 19-years-old, Selina was suffering a major flare-up, and ended up at an urgent care facility. “They kept telling me they had to lance and pack the boil and that they were going to take a culture to test for MRSA,” she explains. “They didn’t numb the area enough and I felt the entire horrible draining and packing process. They eventually called me a few days later to tell me that it wasn’t MRSA but nothing else was said. After that experience, I never wanted to have to be opened again so I would just ignore any of my flares and try and live through the pain in order to avoid going to a doctor.”
At that point, Selina was dealing with larger and larger outbreaks, and at the same time having people tell her that it was just “razor bumps,” or that she was “unhygienic,” or that she wasn’t “changing her razor head enough.” Never once was it suggested that she could possibly have an autoimmune disease.
By 22, Selina says her pain was so bad, it hurt to walk because the vibrations from her footsteps would send “shooting pain” straight to her underarms.
At this point, a primary care doctor referred her to a surgeon, who was the first person to mention the possibility of HS, but didn’t give an official diagnosis. “They were worried about me getting Sepsis,” she recalls. “That general surgeon operated on both my armpits at the exact same time making it impossible to move, refused to put me on antibiotics after the surgery, and then when my arms weren’t healing after over a month, he tried to cauterize them. Still at this point, I was never told it was an autoimmune disease and something I would have the rest of my life.”
Selina says that part of the problem is that so many doctors don’t understand the illness — or at least, don’t know how to recognize it.
“If doctors don’t understand, how are the patients suppose to?” she says. “I’ve had people on Instagram message me that doctors told them it was a STD or because their non-existent pet has fleas.”
Speaking of Instagram, Selina decided that the best way to cope with her HS was to try to find the humor in the situation. Her account has thousands of followers and counting.
“My best friend Alyssa really helped inspire me to help share my HS story,” Selina says. “She helped me realize that other people are also suffering from HS and I can use my humor to try and turn something dark into something happy. She helped me feel so comfortable and like I can open up about the HS in a humorous way.”
“I started making memes about living with HS/a chronic illness and other chronic illness warriors started saying that the memes are helping distract them from what they’re going through. The page is really therapeutic for me so raising awareness for HS while also getting my feelings out and helping distract people from their own chronic illness struggles is really all I could ever hope for. Between my friends, my boyfriend, my family, and the chronic illness community, those people are what inspire me to keep sharing my HS story (and memes) with the world.”
Selina says she’s incredibly grateful for the community she’s met through the internet.
“I truly have never spoken with someone that has been rude or harsh with HS and the HS community is just so welcoming and kind,” she says. “At the time of starting my page, I had never met anyone else that had HS so the Internet was great for connecting me with people that were going through the same things I was. I’ve spoken to men and women from around the world and it’s so interesting to hear their HS stories. They’ve helped me find new products, new treatments, and ways to help my anxiety. I will forever be appreciative for the people I’ve virtually met through the internet.”
Today, Selina says one of the biggest hurdles facing those with HS is that the disease is generally misunderstood, a fact which she attributes to it being “uncomfortable” and “embarrassing” by nature. “People don’t want to talk about it,” she says. “Since the disease occurs in awkward areas like armpits, groins, butts, breasts, stomachs, and near the reproductive areas, it can be very uncomfortable to come out and talk about when you’re worrying about being judged or thought of as being disgustingly unhygienic.”
Everything about the disease is misunderstood, from how it is caused, to ways to treat outbreaks. Patients don’t like talking about it so then doctors misunderstand it which then only confuses and misinforms the patient even more. — Selina Ferragamo
“I wish that people would understand that Hidradenitis Suppurativa is an uncontrollable autoimmune disease and a person isn’t disgusting for suffering from painful boils on certain areas of their bodies,” she says.
If she could give a piece of advice to her younger self? Selina says that she’d remind herself not to blame herself for what’s happening, and not to avoid seeing a doctor.
It’s wisdom that anyone — especially those struggling with the onset of HS — could benefit from.