P: I was first diagnosed at 13, right after puberty. Learning all new things, and then here we go, it’s HS. It was a difficult time, but got through it.
W: How bad was it at first?
P: At first, it was just a little bump. My friend thought it was like a fat bubble. My mom was like, ‘Oh, it’s an ingrown hair.’ And they were both wrong.
W: See that’s something I always struggled with...It was tough to go to doctor after doctor, and nobody knew.
E: Exactly…I started experiencing symptoms when I was 13 as well. And I finally just had to break down and tell my mom. She was like, ‘This isn't normal.’ So yeah, we need to go see a doctor. And you know, at 13 years old I’m like, ‘Okay, well where do I go for more help on finding out about HS?’ Now, thankfully, there’s tons of information—mind you, I don’t know about you guys, but a lot of misinformation out there on the internet. What about you?
P: There was this health book that my aunt had, and I would search through it to try to find what it was. I couldn’t even say HS in its full term. But I am glad that there’s a lot more support groups now out there. There’s websites and foundations for it now. So, I think that’s pretty cool.
W: It seems like, when I went through this there was a lot more, knowledge and research…I think it’s a huge positive thing for people to be able to embrace it more. When you can at least understand what you’re going through and why…it’s something that your body does internally that creates these things, it’s not your outside habits or the way you're living your life. It’s just something that, unfortunately, we have to deal with.
P: That’s the problem with having an invisible disease…like right now, I have three open abscesses, and you wouldn’t know unless I told you. I look totally fine.
W: Right, right.
P: So we live our lives with a mask on, because people just don't know…and they don't understand.
W: Have you always been able to be open about it? Like when you were younger, were you able to tell people about it? Or were you a little bit more reserved?
E: I was a little bit more reserved, definitely in my teenage years. I think it was...for me, just like a light just kind of came. I was like, ‘I can’t live in the darkness anymore.
E: And I can’t let HS control me. It’s just a diagnosis, it’s not who I am.’
P: I think I had a longer road to kind of get to that point…Insecurity creeped in a lot. I didn't want to go to classes. I had to walk really far to get to class. And I just suffered in silence…and decided to go back home after that year. Luckily, I found a college…the admissions lady, I wrote my story out in my letter to her. And she understood, and brought me into the school. That's when I developed the mantra, ‘My body has HS, I don't have HS.’
W: That’s a great way to look at it. What I love about these conversations with you is, I feel like we all have the right attitude about it. We deal with it in our own way, but this is not how we are defined, and it’s great to see other people that are dealing with it in a very positive way because I’m sure there’s a lot of people out there that don’t talk to anybody about it, and I think, hopefully, we can get a message out, where it’s okay to talk about it and kind of normalize it for everybody that’s dealing with something like this.
P: Yeah, we kind of all feel the same way, which is cool.
E: For sure. I mean, it’s not who I am, it’s just something I have. And I have always said, it’s a little scary to share what you are going through, but if I can help one person…
P: It makes it worth it.
E: …It makes it all worth it.