As I sit here today, I have been diagnosed with Hidradenitis Suppurativa (HS) and can honestly say I have never been happier.
It hasn’t always been this way, though, so I’m going to tell you how HS has changed my life in a positive way.
My HS journey started back in 2010, when I was just 13-years-old. A painful bump had appeared in my groin area. I had quite bad cystic acne at the time so I put it down to that. Of course, it wasn’t something I shared with another soul as I was so embarrassed. These bumps kept appearing sometimes one after the other and by 14-years-old, my groin was covered in those famous purple scars. It destroyed my body image entirely.
I saw a dermatologist at this point for my cystic acne, but I didn’t even mention the bumps in my groin with pure embarrassment. I was prescribed Accutane, and just assumed that this would also clear my groin but unfortunately I was wrong. Around this age, I also developed quite bad depression and anxiety and very poor body image issues. I felt like a freak and I was so jealous of the other “normal” girls. At this age, you start to think about your future and finding a boyfriend. I cringed at the thought as nobody would ever want me, I thought I looked diseased.
Fast forward to 2017, my bumps were getting worse and my cystic acne on my face was back, so I went back to my dermatologist and I was prescribed another dose of Accutane. This time, my bumps were causing me so much pain and embarrassment, I asked would this help the acne in between my legs too. The dermatologist looked confused and asked to see them, and I reluctantly showed her. She just looked at me and said “That’s not acne, that Hidradenitis Suppurativa, and no, this won’t clear that.”
She wrote down the name of this disease, told me to research it and I was sent on my way. When I got home, I googled HS and I thought there is no way I have this. It sounded much too bleak and I continued to ignore it until I couldn’t any longer.
The bumps were getting worse and the pain sometimes caused me to have limited mobility when I had a bad flare, it gradually got worse and I was prescribed the odd dose of antibiotics when I got a bad abscess. I decided to research more, and I found out there is no cure. This was devastating, and sent my depression worse. I began drinking heavily every weekend if not more to escape my reality. I tried a gluten-free diet, dairy-free diet… nothing worked. I was at my wits end.
I kept doing this destructive cycle right up until 2020.
Up until that point, I only had flares in my groin and they were only sometimes debilitating, but this started a journey of absolute hell. The pain I felt from this underarm abscess was unbearable. It was nothing like I was used to. I was prescribed a course of antibiotics and I hoped that that would be the last of it but, oh, how I was wrong.
I had flare after flare back to back and the next one was just as bad as the last one. I was miserable. Getting blackout drunk every weekend then suffering with severe anxiety along with flares and I couldn’t see a way out. This continued until September. I had two abscesses that were worse than anything I had ever experienced.
My doctor sent me to the hospital, and I was taken under general anesthesia to get them lanced. I had to get these wounds packed by a nurse for weeks, and this was up there with the worst pain I’ve experienced. I had another surgery under local anesthetic two weeks later, and something in me clicked. I vowed to make the most of my life and seize every moment. I quit drinking alcohol, I quit smoking and I made an Instagram, which I dedicated to my HS journey and sobriety. I also reconnected with old friends who coincidentally had recently gotten sober too. It was like it was written in the stars.
I toyed with quitting drinking and improving my life before but this time was different. I met so many lovely fellow HS warriors who I now call friends and also met lots of lovely sober people who also have chronic illnesses. I attended a HS specialist in Dublin in December 2020 and I have been virtually flare free since January 2021.
I have taken up cold water swimming on Sundays instead of being hungover and I have made some lifelong friends who are fellow HS warriors. I spent so many years hating myself because of HS so I decided to change the narrative.
I now thank my HS for shaping me into the woman I am today. I have also decided to go back to college to become a mental health nurse. I believe this would not be possible without HS. My journey isn’t over yet though as there is no cure and there’s always a chance this medication will stop working. I am also currently waiting on surgery as I have a fistula caused by the recurring abscesses but I have never been happier and more grateful in my entire 24 years on this earth.
If my HS hadn’t gotten so bad, I don’t believe I would have changed my life for the better, I’ve gained a whole new perspective.
It isn’t all so bad.