A woman surrounded by hearts looks over her shoulder

Fully Accepting My HS (Part 1)

I have had HS for about about 12 years and I think I can confidently say that I had HS for at least half of that time before fully accepting what that meant.

At first, I thought HS was this awful disease that caused my body to attack itself and I felt gross in my body. For the longest time, I felt that myself and my body were always at odds with each other.

I was scrolling on Instagram recently and found a post from someone with type 1 diabetes. As a T1 diabetic myself, I felt moved when he started talking about what it means to fully accept diabetes as a major part of your health. He mentioned how your actions and feelings about your diabetes can start to change when you finally accept it.

I started thinking about how this applied to my HS. When I first started getting boils at around 15, I thought HS was just something I had to deal with temporarily, but I eventually got to a point where I realized it wasn't going to go away any time soon. As weird as it may sound, I needed to figure out how to develop a healthy relationship with my disease.

The reality is, HS is chronic and I simply couldn’t spend my entire life hating parts of my body. And after doing just that for the better part of a decade, I realized that wasn’t doing anything but messing up my mental health.

Understanding hidradenitis suppurativa

I remember back in 2010 or 2011 when I first started looking up my symptoms online. I think I Googled "boils under arm" and it didn't take long to find the term hidradenitis suppurativa. But there wasn't too much online about it back then. I didn't have an official diagnosis at the time, but I still felt better that there was at least a name for what I'd been feeling.

I didn't know what to do with that information though, so I was only caring for my HS on an as-needed basis. It wasn't until college, when my HS started getting really bad, that I started looking for resources to help. After having the painful experience of getting a boil lanced, I knew I needed to learn more to avoid having to deal with that again. When sharing my story on YouTube, I learned that there were entire HS communities. I learned so much from people's comments and by joining Facebook groups and following other HS advocates. Does this mean I’m an expert on all things HS? Absolutely not. There’s still so much I’m learning about HS, my body, how HS affects my diabetes and a ton more. But I know way more than I did before.

Accepting HS as a part of my healthcare

No matter how hard I tried to ignore it, HS was going to be a part of my health journey just as much as diabetes was. And at first, it pissed me off. And that's okay, I think we're allowed to feel sadness and anger and even grief about things that concern our health.

HS is hard and as much as I'm all about spreading positivity despite HS flare-ups, it's still a bummy situation sometimes. Realistically, some days are going to be tough and it's normal to feel like there isn’t anyone who understands the pain you're going through or even that you're going through pain.

But eventually, I had to learn to let go of the sadness and anger surrounding my HS. Don’t get me wrong, this doesn't mean I still don't feel it sometimes and when I do, I allow myself to feel it. But I can't let myself stay in it though that's way easier said than done. Having other HS warriors in your corner and a strong support system behind you makes it a little easier, though.

Check back for Part 2 of this series!

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