What I Want Others to Know About Life with HS

Usually when I share that I have a chronic illness, someone will ask what it is. I’m very open about my hidradenitis suppurativa (HS), but I still struggle with how to answer this question. I’ll first say it’s HS, then I’ll follow up with a joke about how it’s a mouthful. I debate how to best describe what it is that I, and so many others, live with. If I say it’s a skin disease, I’ll sometimes be met with a look of dismissal that suggests, That’s all? If I explain that it results in boils and lesions all over the body, there’s usually at least a quick look of disgust that passes over the person’s face. I just want to show them one of my flare-ups to help get my point across of just how painful it is. 

Here are some other things I want people to know about life with HS. 

1. It can affect mobility. 

I can’t remember the last time I’ve been able to raise both of my arms over my head without intense pain. It’s been years. On bad days, the pain of putting a T-shirt on brings me to tears. I’ll also find myself unable to walk without intense burning in my groin area, due to open wounds that are draining. It can affect so many simple activities, such as showering, preparing a meal or sitting at a desk or table.

2. It greatly affects my mental health, including body image and self-esteem. 

My HS symptoms exacerbate my anxiety and depression. I’m constantly anxious about how I’ll feel later in the day or the next day. Will I be able to get my work done? What if I can’t walk Petey, my rescue dog? I also get anxious whenever I have to cancel plans because of my pain levels. Will my friends stop inviting me? Am I being flaky? 

At night, depression takes over. I wonder if I’ll always be in pain. As I change into my pjs, I inspect my boils and lesions and try to soak up the drainage. I feel like I am in a never-ending war with my body. And my depression likes to try to convince me that I will never reach my dreams because of my HS. 

HS has resulted in me not being able to move my body in ways that used to be enjoyable and active, such as spinning and certain types of yoga. I’ve learned to adapt, but it is still extremely frustrating to want to be more active and not be able to. I want to be able to walk farther than a block or do something other than restorative yoga. This in turn impacts my body image. And it doesn’t help to be constantly reminded of the ways HS has ravaged my body — the scars and open wounds don’t make me feel confident or attractive. 

A thought that frequently passes through my mind is, If I could just get to a point where my stomach is flat, people won’t notice my HS. I hate how obsessive I’ve become about my body, constantly wondering what others are thinking if I decide to wear a tank top. 

3. Hugs make me anxious. 

I’ve noticed that since being diagnosed with HS, I’ve been less comfortable with hugs. Even the thought of being in close physical proximity to someone causes anxiety. The pus and drainage that seep out of my wounds has a noticeable smell, no matter how much deodorant I apply.

4. My clothes are frequently stained because of drainage.

Speaking of drainage, I can only wear tops once (or maybe twice if I’m having a good day) because the armpits are wet by the middle of the day and need to be washed. I feel like I can’t buy nice clothes because they will get ruined quickly. I used to love dressing up, but these days, I find the most comfortable tee and hope the stains come out in the wash. Borrowing clothes from a friend or using Rent the Runway is out of the question because of this issue. 

5. It’s not caused by poor hygiene. 

Most HS warriors would probably tell you they shower more often than those without this disease. HS is not caused by poor hygiene. Don’t let any doctor tell you otherwise. This disease is not your fault. You didn’t do something wrong. 

6. I’m in pain every single day. 

I don’t remember what it’s like to not be in pain. That thought brings me to tears as I write this. I’m reminded of my HS from the moment I wake up to the moment I go to sleep. It feels like someone is constantly pouring hydrogen peroxide on an open wound. The lesions itch and burn. If I move the wrong way, I’m met with a sharp pain that feels like someone stabbed me. 

While I have no idea what the next day holds, I still go to bed full of dreams and plans. HS will not stop me from living my life. I can still kick butt—I just need a few more naps, showers, and shirts to do so. Stay strong, HS warriors.