Things I Wish People Knew About HS
Hidradenitis Suppurativa is a complex disease. It presents aggressively for some patients while other patients have milder cases and remain well within that spectrum for their entire journey. Because chronic illness is so individualized, one can only make speculations about the impact it'll have in someone's lifetime. Recently I was reminded that this skin condition that I've known since I was a little girl does have the potential to spread to spaces outside of what is considered "normal".
Hidradenitis suppurativa is incredibly unpredictible
For those who may not know a lot about HS, the condition typically presents as boils and cysts that range from the size of a pea to as big as a tennis ball or an orange. At one time, it was thought that HS was specific to certain regions of the body like the armpits, groin, thighs, buttocks, and breasts, but science is now realizing HS can present anywhere on the body from the aforementioned areas to the head to the face to the legs and ears. This makes living with HS increasingly stressful. It's one thing when you can hide the wounds and scars, it's another when it presents in areas, like the face, where it's almost impossible to hide.
Fear plays a role when I pull from my past experiences to assess the potential impact of a new flare. It comes from knowing what HS has done to other parts of my body and realizing that that could happen to my ears or face. I would love to say that I will be in remission for the rest of my life, but I experienced remission back in 2013 and fell right back out of it too. Anything is possible and the only constant is change.
Hidradenitis suppurativa should be supported like other health conditions
HS does not have a cure which can take a toll on your mind. To think you'll have to manage such a debilitating condition until you die is overwhelming. However, remission is possible. I've experienced it and have heard other patients' stories. Remission is not a cure. A cure is essentially an eradication of disease while remission is a lessening of symptoms. Remission means there's a possibility of it coming back and a cure means it never will.
HS is incurable right now and anyone claiming to have a cure doesn't understand the nature of the condition. There are estheticians selling magic creams and lotions to fix an internal issue. Yes, there are steps we can take to lower inflammation externally and heal the wounds created, but this doesn't prevent new lesions from appearing. Be wary of anyone selling "cures" for HS.
What I truly desire is for HS to be widely known, supported, and funded like heart disease, breast cancer, and psoriasis. Educating the world means patients experience less shame and isolation. This also means patients are diagnosed quicker and potentially treated faster as well resulting in great management of the disease. 1% to 4% of our population is suffering and some of the things that separate us from healing are lack of education, funding, resources, advocacy, and awareness.
Every moment we take to educate ourselves is a step closer to normalization.
Have you taken the Hidradenitis Suppurativa In America survey yet?