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How I Learned to Ask for Support with HS

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I was diagnosed with hidradenitis suppurativa the winter of my senior year of college. At that time, I had abscesses in my underarms. I was definitely in pain, but I was still in the early stages, so my symptoms were milder. I also didn’t understand what it meant to live with HS. The doctor who diagnosed me handed me a pamphlet on HS and told me to find a dermatologist. But it was my senior year, and I didn’t want to miss a minute of it. 

As a way of coping, I would just go out and party with friends. I ignored my pain as much as I could, and I was good at hiding it. I wore clothes that covered my boils. I escaped to the nearest bathroom if an abscess burst. My bedroom closet became my safe space when it all got to be too much. 

After graduation I moved back in with my parents while I looked for a job. My mom and I are close, and she knew about my diagnosis, so it was easier to ask her for help. She would help me cover my open wounds with gauze or draw me a bath when I needed to soak a boil in my groin area. On my bad days she would make me meals and hold me while I cried. It was so nice to have support. By this point I had a dermatologist too, but she wasn’t very knowledgeable about HS. As a result I was always on the search for a new doctor who could help. 

About nine months later, I decided to move from the midwest to Los Angeles in pursuit of a new career and warmer weather. My brother lived a couple of hours away, and I knew a few other people who lived in the city. But for the most part, I was on my own, and my mom’s absence was immediately noticeable. I tried to get by on my own for some months, but as my HS worsened, it became too much. I knew I needed some help — both personally and medically. 

I found a dermatologist who had patients with HS and knew about a wide range of treatment options. This was a game changer. I finally had a doctor who knew more than I did about this disease and could offer new ways of managing my pain and symptoms. I also joined an online support group for those with HS. This helped me feel less alone as I navigated new symptoms and challenges. I also received so many good tips from other HS warriors who had lived with this disease for much longer. 

However my HS continued to worsen, and the number of treatment options started to decline. I was considered to be stage three … the most advanced stage. I knew it was time for me to reach out to a few friends who lived near me. I had a couple of friends from high school and college who knew about my HS and offered long-distance emotional support, but I needed physical help. 

At first, it was hard for me to share my illness with people I wasn’t close yet with. I worried that I would be judged or that they would see me as a burden. I didn’t want to ask for too much. I also wasn’t even sure how they could help. What kind of support did I want? There are certain things that I would never feel comfortable asking a friend to help with, such as changing my dressings. 

But as time went on, I discovered what support looked like for me. Friends now drive me to appointments if I’m too tired to drive myself, walk my pup when I have a flare-up in my groin area, drop off meals and pick up prescription meds. I can’t get through my most painful days without their help. 

I found that my friends were happy to help when they were able. They didn’t see me as a burden at all. We tend to forget that, as humans, we like to feel needed by others. But at the same time, I had to learn to not take it personally when I couldn’t find someone to help out. It didn’t mean they didn’t care. Not everyone could be there in the same way my parents were when I lived with them. 

A couple years after living in LA, I decided to seek professional help for my mental health. I constantly felt anxious and sad, to the point where it was interfering with my daily life. I had never seen a therapist, but I figured it wouldn’t hurt to give it a try. Once I found the right fit, I loved having 50 minutes to myself in a safe space. I could talk about whatever I wanted. And I quickly realized just how much my HS had been impacting how I feel. I learned new ways of coping with my emotions and the constant physical pain. I felt validated and seen. It was the missing puzzle piece in my support system. 

When I was first diagnosed with HS, I thought I could do it all on my own. And I managed to for a while, but once I learned how to reach out for support, things became easier — a weight was lifted off my shoulders. I now have a medical team, friends and family, and a therapist who are in my corner to remind me that I’m not alone and that I deserve help. You don’t need to carry this burden by yourself.

Originally published: April 27, 2021
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