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Real members of myHSteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

What Do You Wish Others Understood About Living With HS?

A myHSteam Member asked a question 💭
San Francisco, CA
September 15, 2023
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A myHSteam Member

How painful the disease can be. And that it's not contagious. Also we are not dirty people. I wish that people would learn about the disease before passing judgement.

October 12, 2023
A myHSteam Member

I wish people would understand that, just because we look well, doesn't mean we are. Also, this disease is chronic for most and one of the most painful and, debilitating conditions. Sometimes we want to be left alone.

November 20, 2023
A myHSteam Member

I wish Dermotology depts understand that when we have a flare-up, we need t oget in ASAP not 3 months from now. I still cant find a dermo to get in quicker than 2 months from now.

September 15, 2023
A myHSteam Member

The biggest one for me is we are NOT LAZY!

January 17
A myHSteam Member

I wish HS wasn't such a personal thing and other people knew about it. I suppose it would be nice if they knew how devastating it could be. It is hard it is for their friends, family and lovers to understand completely how each of us suffer. Although I hate sympathy, so don't want them to know for that reason! I am one of the lucky ones, and I truly feel for so many people that are so alone with HS!

September 15, 2023

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