a woman looking at a path with bubbles floating around her of a heart, school, car, and megaphone

15 Years with Hidradenitis Suppurativa (HS)

As 2023 approached, I realized this marked 15 years since my HS introduced itself like the most unwelcome of visitors. I first started having HS symptoms when I was 13 years old.

It was one abscess on my thigh I initially brushed off. However, it grew and grew until the pain was too much. My mom took me to the emergency room, where they drained and packed it. Thus began my long journey with HS.

HS has been with me through many firsts

HS has been with me through many firsts: my first day of high school, my first kiss, my first car, and my first day of college. I’ve gone through many treatments, not only watching but feeling how it has progressed to stage 3.

I used to see my HS as something separate from myself, an invisible monster I begged to leave me alone and go away. I can clearly remember the day I realized that there is no cure and HS is something I will have to live with forever. Logically, I knew it was a chronic disease, but deep down I guess I never stopped hoping something would cure me. That was a hard day for me. It was something I thought I had come to grips with, but hope had buried itself deep until I caught myself disappointed when one treatment failed.

As much as HS has wreaked havoc on my life, and at the most inopportune times, in a way it has made me a better person and a better advocate.

How having a chronic illness has helped me

Having a chronic illness has helped me be more empathetic, more understanding, and more passionate. I was already those things, but I honed my skills and found my voice by learning to advocate for myself. I’ve applied these skills in most aspects of my life – advocating for disadvantaged persons at work, helping my family navigate the medical system for their own health challenges, and using my voice to advocate for others with chronic illnesses.

I no longer see HS as this separate, spectral entity that rules my life. I’ve come to see it as one more fact about myself. I used to be filled with so much shame and embarrassment because of my HS. Those feelings never totally went away, but they are less prominent now. I like to do an exercise in my head to help with these feelings where I list facts about myself. It goes something like this:

Facts about myself: My name is Isela, I am 28 years old, I was born in Phoenix, AZ, I like the color blue, I love to read, and I have a chronic illness called hidradenitis suppurativa.

Accepting my hidradenitis suppurativa

The key is to list facts about yourself that are neutral and don’t invoke any negative feelings. When I add my HS to that list, it becomes just one more thing about me that I accept as fact. There is no judgment or shame. I do this from time to time to help with any negative feelings that pop up (which is a lot).

Although I accept and understand the diagnosis, having HS still sucks. I used to shy away from admitting that, giving in to the toxic positivity on social media. But there are days I am in so much pain I can’t think of anything else. Other days, I am full of grief for not having a “normal” body, whatever that is. I get frustrated when I try to hide the bandages and flares on my thighs and underarms.

Although I am 15 years in, I am still learning and growing with this disease. No amount of therapy and positivity will ever erase the pain and scars, but at least now I am better able to cope with my HS. As I reflect back on these years, what has helped me most are the people who support me and a community to share all the highs and lows of HS.

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