Overcoming Adversity: Hayley's Journey to Acceptance

The Editorial Team at HSDisease.com is highlighting HS warriors and their journeys in our Voices of the Community interviews. We talked to Hayley and she shared why she has chosen to speak out about her hidradenitis suppurativa (HS).

I’ve always been a pretty positive person with a can-do attitude, but boy did I realize what I was made of over the last 5 years of my HS journey. Growing up playing sports, I was a pretty self-disciplined human, and it was all about routine and building character. Anything that was hard was an opportunity to better myself. When I was diagnosed, at first it was a tough pill to swallow, and for a long time, I simply rolled with the punches and tried to grab onto the next best thing.

Finding strength within myself

It turns out that at some point you just can’t sustain that amount of “it’s fine” without crashing and burning. I finally admitted to myself after 4 years that I wasn’t coping, I was tired and frustrated, I needed more support, and I realized it was ok to have a good cry on bad days. Feeling your feelings and recognizing when you are not ok is a strength in itself and is the best thing I have learned about myself.

Everyone has issues with their body. Someone thinks they are fat, another person hates their nose, and someone else is nervous about their hairline receding. When I feel self-conscious about visible scarring or a flare, I tell myself that everyone only cares about how they look, and they don’t care how you look.

Focusing on things I can control

When I am overwhelmed with pain or frustrated that I have another flare, I acknowledge it sucks but remind myself that it isn’t anything I haven’t been through before. It will be tough and it will be painful, but they will eventually die down if I follow my routine with ointments and diet, and there will be a new day that will be less challenging.

Any time that I’m feeling helpless, it's all about loading up on some self-love: a hot bath, a shopping spree, or a sweet treat. An active flare is never easy to overcome, but I try to focus on the things I have control over and remind myself of all the things I love about myself that far outweigh my body attacking me.

Telling others about my HS: Honesty is the best policy

I’m not going to lie – I was so embarrassed in my first year of diagnosis. I think more doctors and nurses saw my lady bits in that year than my own parents did when I was a baby. Over time, I became used to it and grew more confident with telling my closest friends. To be completely honest, it was getting too hard to hide. It got to a point where I’d be limping around or wincing when I moved my arm, and I just looked tired because I was so damn exhausted. Dating is a bit trickier, but I think honesty is the best policy, so I explain HS to them, how it makes me feel, and if it's an issue for them, then that is their problem. I’ve got enough on my plate. Haha!

In 2020, in the depths of COVID lockdowns, I decided that I was ready to “come out.” The main reason was that I wanted to share it with all my social media contacts to raise awareness. There was every chance that someone I knew or they knew has undiagnosed HS. I think it was also important to share that everyone is going through something, whether you could see it or not.

Using my voice to spread awareness about hidradenitis suppurativa

I’ve connected with a few HS warriors through the online community in Australia and was overwhelmed and saddened by the number of people who just silently live with HS. They compromise their friendships, their jobs, or relationships because they are too embarrassed to talk about it. Everyone's HS journey is different, but I wish it wasn’t so silent. If more of the general public knew about it, those HS warriors would be surprised to know that all those connections in their lives would be so supportive and have compassion for them. That’s what happened when I started talking about it.

I’d love our HS warriors to have the confidence to come out. I want them to shout about it and demand more research be done so that hopefully a cure for HS can be found or there will be more people in remission. If more people were aware of HS, maybe it wouldn’t take so long for us to be diagnosed because every general practitioner would know what it is.

To have those HS warriors know and understand that they are not alone, that the work is being done, and that they are supported would make me really happy.

Share your HS story!