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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 open for that! Let me know when you're free and we can set something up.

      It would be great to figure out how we can get cards or notices to give out at work or even at school or events or even restaurants that would help us feel more secure in our experience. It really shouldn't be so tough to exist.

    2. that sounds great! I’m usually free in the weekends so maybe we can set something up after the holidays.

      Also, the info cards are a great idea💡 I think that’s a great way to spread awareness. Especially in the schools like you suggested, so this way if there are any young people suffering with HS they will know that they’re NOT alone and most importantly, they’ll know how to handle HS. I’m looking forward to working with you! 💜

  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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