Within a single day, I can experience different levels of pain varying from a feeling of an itch (if I'm lucky) to someone twisting my parts of my skin into little circles. However, most people wouldn't notice that just by looking at me.
I have a chronic skin and gland disease known as Hidradenitis Suppurativa or HS for short, because even I can't say that first name. I have also heard it as Acne Inversa (AI) but its not nearly as common. This disease is something that I have lived with since right around the age of 10.
According to the Hidradenitis Suppurativa Foundation website, HS is described as," a chronic, non-contagious, painful and quality of life impacting skin disease that causes boils to form in the folds of the skin."
Which basically means, and the way I describe it to my friends, is that I have very deep painful and huge pimples all over my body.
Up until the past few years, there hasn't been much information on this disease. I went through life just accepting that I will always and forever be in some amount of pain or constant discomfort. There is a campaign that recently came out, #NoBSaboutHS, that has allowed those affected to share their stories and experiences with the disease. I know when I first saw the ad for it, I bawl cried.
I won't get into the gory and disgusting details of HS but if you want to see it for yourself, just do a google search. However, since they are all over my body, I have to wear, act, and eat a certain way to try to avoid the pain. I absolutely cannot wear jeans that are too tight in the midsection. They will rub the wrong way and cause one or many to form. If one on my leg recently drained, I have to walk a certain way to make sure it doesn't hurt.
I have always been extremely hesitant to discuss my disease. Mainly because it's embarrassing and I feel like everyone would judge me the moment they saw the areas. I hardly ever wear dresses, sleeveless shirts, or shorts because that is when it shows or is worse in.
I would be shy to open up to partners about it, because I was scared that they would think it was an STD, which, as previously stated, we know its not. It is genetic; my father had it, my cousin has it, my grandfather had it, etc. I would hide away, turning of lights if things got above pg-13 and just refused to open up about it.
Each day I live, I carry this on me, but that doesn't mean that it defies who I am. Most people don't realize that I have this disease. I give back to my community, I have amazing friends and family, and I have hopes and dreams that I do not intend on stopping to achieve. I am Leah Schoolcraft and I have Hidradenitis Suppurativa.
For more information about this disease, symptoms, treatments and resources please visit http://www.hs-foundation.org/what-is-hs/
