Having Confidence While Living With HS, My Story
I made it through because it hit me one day that HS is simply one of the cards I’ve been dealt.
By Akia Ward
As I look through my drawers for something to wear, I’m scared. I can’t wear anything too revealing. Even a tank top will show my scars, and I don’t want people to stare. I’m often terrified by the thought of going out in public. What will people think of me???
I was about 12 the first time I developed a cyst. I woke up to get ready for school and I noticed that I had a knot under my arm. I figured it was a bump from an ingrown hair and didn’t pay much attention to it. The next day, however, that small bump had turned into a softball-sized lump.
Understandably, I freaked out. When I showed my mom, she promptly escorted me to the doctor. The first thing the doctor did was press on the bump and squeeze it. At this point I was already in so much pain. I couldn’t even put my arm down. She had no idea what had caused the cyst, or what it was, exactly. The doctor asked my mom for permission to drain it. Unsurprisingly, the process of being cut open so the doctor could squeeze the puss out of my flesh was excruciating. They had to hold me down. Little did I know, this was just the beginning of a long, painful journey.
Up until this point, I had been very active my entire life. I played several sports during the school year and over the summer. Once I was diagnosed with HS, everything changed. Sometimes, I couldn’t run because I had a cyst on my leg and the continuous movement was just too painful. Or I couldn’t shoot a basketball because I had a cyst under my arm.
Slowly but surely, I started to realize that HS was going to be a constant in my life. My basketball uniform was sleeveless and I hated that it showed my scars and bandages. I wore an under armour shirt beneath my uniform all the time. As a teen, the HS was the worst in my armpit area, and the doctors suggested surgery. I was hesitant because I wanted to join the military and I wasn’t sure if I would have full range of motion post surgery.
It took two years of countless hot compresses and bandaging before I decided to go through with the surgery, 20 weeks before I was scheduled to enter the military. The recovery time after my surgery in both armpits? Nineteen weeks.
After joining the military my HS wasn’t so bad. But just when I thought everything was okay, the skin disease struck again. I developed a cyst on my chest, between my breasts. I couldn’t wear bras and it was a tricky area to bandage. Plus, the pain was unbearable. I chose to have surgery in April, 2014, and the cyst went away. But a few months later, it returned with a vengeance. I had developed a tract from the cyst that went all the way to my sternum. I soon found myself under the knife yet again for the most painful surgery I’d experienced to date.
After recuperating for a few days my stitches started to come apart, and there was a hole at the top where my breast started. I remember the doctor taking a cutip and sticking it into the wound to clean it out. The skin was so sensitive and I immediately started weeping. I was in so much pain that I wanted to throw up. At this point I started having a panic attack. It felt like my body was shutting down. I had reached my peak for tolerating pain and I couldn’t take it anymore. I had an 8-inch open wound on my chest. I had to change my bandage three times a day and clean it out with a cutip myself. Soon enough, I became depressed. I was hurting so badly and it seemed like I couldn’t do anything about it. I just wanted to be done.
I would not have made it through this period without the support of my boyfriend and my family. They kept telling me that everything was going to be all right. My boyfriend helped me change my bandages and clean the area even when all I wanted to do was hide from him because I felt so ugly.
I made it through because it hit me one day that HS is simply one of the cards I’ve been dealt. Quite suddenly, I realized that I was going to have to deal with this for the rest of my life. And that I could either let HS control my life, or I could do my best to control it.
Since then, I’ve stopped hiding from others and from myself. I’ve learned to embrace my scars. Do I still have HS? Of course I do! But I’m more active now. I work out every single day. I refuse to shut myself in because of HS. It’s just a part of who I am. I see now that HS has helped me grow into the strong, independent woman I am. And I wouldn’t change that for anything. 