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HS Flares

Does anyone else have PTSD from HS flares? I find myself afraid to do anything because I'm not sure what will trigger my body to break down. The unpredictability of it all is one of the most difficult factors.

  1. Hello I also suffer PTSD because of HS flares.

    As wrote, I used to sit a certain way at work just in case I had a flare in that area and I didn't want it to burst as I was working...and for the record, it has happened to me a few times already while I was at work. (It felt like a living nightmare)

    Secondly, a lot of times I would maybe have a seat for only 30mins for my lunch break during an 8 to sometimes 16hr shift.Those days were HORRIBLE.

    Sometimes I still can't believe I went through those dark days. Another thing I would do was wear a pair of basketball shorts under my work pants just in case of a leaky flare. So much PTSD from this awful illness.

    1. I am so sorry you had to experience that. The embarrassment and uncertainty can be a huge burden. I think it would be amazing if we could figure out a way to address unexpected leaking.

      This made me think of when I was young and I was a buffet while I was sleeping over my mom's friend's house because my parents were gone for the weekend. When I went to the bathroom I had puss all in my pants and blood on my stomach. I was probably 13 at this time. I didn't tell anyone. I cleaned myself up and shed a couple of tears and went back to the table. I really wish we had support during these traumatizing moments.

    2. thank you.You're so right. The embarrassment of this happening weighed on me heavily. And I know that most people in this community can agree.

      Also, that sounds like a great idea! I'll think about some ideas and then I'll send you a private message. Maybe we can set up a video call 👍🏼👍🏼

      Sorry, you had to live through that experience. I know the level of anxiety was very high for you during this experience. I feel you're a pain and wish you never had that experience. It pains me to hear this! 😞

      And I agree with you because if this site was created during the beginning stages of my diagnosis, I know for a fact it would’ve helped a great deal with easing my anxiety.

      Just to be able to speak with someone who really UNDERSTANDS what I’m going through would’ve been such a key component for me living a healthier life with HS.

  2. Oh my, yes! I avoid a lot of things because I know it will cause my skin to go bananas! I don't even sit certain ways or in certain things because I know what will come of it. I went to 1 workout class in April, my skin made me pay for it all of May. 🥺

    1. I am so sorry! It's really disheartening when you're trying to do what you think is right and your body revolts against it. Have you tried pilates? I've heard it's really great workout for people like us who experience so much pain from sweating and flares.

  3. I wish there was a way to know when flares were coming or at least predict it kind of like a period tracker but for HS flares.

    1. Hi Jasmine, absolutely. I have diagnosed PTSD and some of it is directly connected to medical trauma. I am afraid a lot of the time that I am about to have a breakout and the pain that comes with it. You are not alone <3

      1. The pain is one of the parts I just wish didn't come with HS because it might be more managable? I don't know.

      2. Agreed. The pain makes it so difficult to take.

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