“For 7 years I thought I was disgusting, or that something was genuinely wrong with me,” Kayla Liptrot, known to her friends as Kells, began in a vulnerable Instagram post. “Which I know now is far from the truth, this condition that made me feel dirty and worthless finally had a name and has actual treatment.”
When she was 18-years-old and at the end of her high school career, her symptoms began. What started as just thinking that she was having a reaction to her deoderant evolved into something more severe in a short amount of time.
“I didn’t really think anything of it because my HS pretty mild back then and I’ve always had a metal allergy since I was about ten so I just figured I could just go to my personal care physician and get prescribed some kind of ointment like usual and I’d be okay again,” she said. “But when I started to develop symptoms in other areas it truly scared me and I thought there was something seriously wrong with me, or that I was just dirty, it was so discouraging to me.”
It wasn’t until just a few months ago that Kells finally got her answer.
“I had been thinking this entire time… that I was dealing with a severe metal allergy. And for seven years I met with different doctors and even my personal care physician trying to get answers as to why my body was still reacting this way no matter what I tried,” she said.
I remember going to my doctor to get tests done and it was such a painful experience and all they said was to take another medication, that was my life I was always on different medications, using different ointments and still not seeing any results. It was so frustrating and painful, especially when it felt like no one was really listening to me or taking it as seriously as I was.
Now that she has a diagnosis, Kells wants to share her story so that other people can understand what they might be going through, too.
“Others who don’t have it or those who know someone that does have it yet take it more lightly don’t realize the pain, or the frustration or even the embarrassment some may feel that come with this condition,” she said. “It always felt like the doctors that I’ve had never really listened to what I was saying and always just brushed me aside not taking my symptoms seriously, and even after they did hear what I had to say about my condition and when I expressed to them my frustrations with my symptoms they pushed another medication on me.”
Kells went onto explain that another big misconceptions is believing it’s contagious. Trying to explain that to a partner is tough.
“I cannot stress this enough — HS can be painful, especially depending on the person, and the severity of their condition,” she said. “There are going to be days when it can be hard to walk or run for some people, days where it can be even hard for someone to even raise their arm. And you know people who don’t have this condition don’t think about it, like lifting your arm up to grab something is nothing, walking or sitting down is really nothing at all to them. But to us when we have HS flare ups being able to sit or to even lift your arm can take a lot.”
Kells’ advice to anyone who knows a HS patient is to listen, and try to be understanding.
“I knew the minute I was diagnosed I absolutely had to share and spread awareness to all my friends and followers. I have struggled with this for years, not knowing what it was, thinking I was disgusting or worthless,” she shared.
“If I could sit my younger self down I would tell her, you are not disgusting! I know you’re frustrated right now and it seems like nothing you do works but you must know, you are not at fault for anything, nothing is wrong with you and you are in no way dirty. Believe me when I say, one day you will find your answers and you are going to see that you are worthy of self love, and you are going to love the hell out of yourself as well as your skin.”
