Picture this: You wake up one day with a bump in your underarm that’s swollen to the size of a golf ball, sending searing nerve pain down your arm.
Spider bite? Ingrown hair?
This was my reality. I had about five of these bumps in both of my armpits, and they were so painful. It truly felt like my skin started reacting and the bumps appeared overnight. Appointment after appointment, I feared I’d never get an answer.
One doctor said it was because of the bras I wore. Another chalked it up to bad acne and told me to shower more often. Another thought it was MRSA, even though my tests for that came back negative.
Turns out I have a skin disease in the autoimmune family: Hidradenitis Suppurativa, or HS for short.
A skin disease like HS can be utterly embarrassing, causing both emotional and physical pain. The bumps naturally occur in high-friction areas — think underarms, bikini/groin, ribs, etc., so it can be easy to cover up. Because it can be fairly effortless to hide, most people living with it are suffering in silence.
My symptoms came and went starting at the age of 14, which made getting a proper diagnosis even harder. I’d go years without a single flare up, and then all of a sudden have three at once. It wasn’t until the golf-ball-sized bump in my underarm and a new dermatologist when I received my diagnosis – at the age of 26.
Getting diagnosed with Hidradenitis Suppurativa was earth-shattering, yet also comforting in a roundabout way. Don’t get me wrong – being told you have an incurable illness is not easy to hear. It took a few weeks to set in, quite honestly. And even longer to know what living with an incurable illness really even meant.
At the same time as the initial shock, I finally had a name for my condition. It wasn’t just sensitive skin and awful ingrown hairs. It wasn’t because I wore bras with underwire in them or didn’t shower fast enough after a workout. Most importantly, I knew for sure that it wasn’t my fault.
We can be our own worst critics; for years I blamed myself for these bumps. Maybe I’d used an old razor, maybe I’d gained too much weight, maybe it was the bras after all…
Rather than ruminating in the “why me?” phase, I let that moment of clarity guide me. My pain now had a name and that in and of itself was assuring. Knowing I had a condition totally out of my control and apart from my own doing? It soothed me.
And it simultaneously ignited a flame inside of me I’d lost for a very long time. With a fresh diagnosis in hand, I dove into self research; reading every article I could and joining the few and far between communities on social media to connect with fellow HS warriors. For some reason, having a name for my illness made me feel seen. And gave me the answers I needed to feel empowered to take action and begin healing.
No longer was I worried about what was causing these painful lesions. No longer did I feel like I was the only one living with this. But instead, I became part of a small-but-mighty community full of warriors.
Because you see, that’s the thing. Most of us struggle with something we think is unique to ourselves, when in reality, there’s probably at least ten other folks out there living through the exact same struggle.
We can’t control how we feel about things. We certainly can’t control living with an incurable illness. We can only control how we live our lives and what we do each day to feel better. I was only 26 when I received my HS diagnosis, and in my eyes I had two choices: let it control me or take back control of my life.
Once I learned more about the disease, started an action plan to begin treating my symptoms and feeling better, my confidence skyrocketed. Suddenly, I was in charge again. I wasn’t waking up with random bumps in my underarms, I was waking up knowing I had Hidradenitis Suppurativa, and that just meant I had to take extra care of myself to be healthy.
Nearly two years post-diagnosis, I’ve never been more confident. I now live what I like to call an anti-inflammatory lifestyle: I focus on eating nutrient-dense whole foods, keeping it low carb/high protein. I move my body because I know daily movement is good for me. I stay hydrated and avoid excess sugar and alcohol. I use skin care products recommended by my dermatologist.
Most importantly, I pay attention to how I feel. I nurture my mind along with my body and it’s done wonders for my HS. In just two years, I’ve gone from about 15 bumps at once to the occasional one or two.
Not every struggle needs a name. But for me? My HS diagnosis took away the anxiety of the unknown, thinking I caused harm to myself, and then gave me the truth I needed to push forward. If it weren’t for my HS diagnosis, I’d be lost. But because of my HS diagnosis, I know I’m a warrior who can get through any battle.