Living with Hidradenitis Suppurativa

Living with Hidradenitis Suppurativa

Each day I live, I carry this on me, but that doesn't mean that it defies who I am.
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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/

Cover Image Credit: Leah Schoolcraft

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Is it just me or does anyone else dread having to make and pick up phone calls? Am I also the only one who gets really sweaty and goosebumps everywhere whenever the dial tone sounds? I hope it's not just me. Maybe it's the idea of a disembodied voice over the speaker that scares me or maybe it could just be me being socially awkward for no reason.

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I rehearse the finalized version another two or three times, and after that, I muster up all of the courage that I possibly can and force myself to dial the number. Finally, when the person picks up, I do my best to read off of my script, even though it's staring at me straight in the face, and try my best not to sound like a robot. Did I also mention that, when I can, I lock myself in a room so that nobody can hear me? Well, I do that, too.

This is exactly why I avoid receptionist jobs. I don't like having to call someone that I don't know because I tend to stutter a lot when the person on the other end picks up, and it's hard to predict how those phone calls will go, so I can't really prepare for them as I would do at home. Usually, I'm afraid that I won't know how to respond to the callers' questions, and I don't want them to know that I don't know how to answer them, but I also don't want to put them on hold and take up their time.

It's especially bad when an office is so quiet that everyone can practically hear all of the "ums" and "uhs" that come after every word I say. This makes me even more self-conscious about the sound of my voice, and I often say to myself, "Is this really what I sound like?" It's basically just an endless cycle of trepidation. Another thing that gets me is the instantaneity of phone calls. It's not like texting or emailing where you can choose not to respond right away. You could even leave the person on delivered or read if you really wanted to, but you can't do the same when talking on the phone unless you hang up on them, which won't be good for either of you.

Isn't it ironic how the phone was invented so that people could communicate by calling, and yet, I don't use it for that purpose? I tell my friends not to call me because I tend to respond better on Messenger or iMessage because I have time to think over my response. If it's an emergency, then I'll make an exception, but otherwise, I try to avoid phone calls at all costs. My parents are probably the only other exception because they're my parents, and both of them say that they'll take forever to respond by texts, so I really have no choice.

In all honesty, I prefer anything but a phone call. You could send me hundreds of postcards, letters, and emails or even spam my Instagram, Facebook, and Snapchat. You could even write a message on a paper airplane and throw it to me. I don't care, but just don't call me. Will I ever get over this? I should, but I probably won't, which sucks, but I'll manage. I think.

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