Connect with others who understand.

  •   Learn from expert-reviewed resources
  •   Real advice from people who’ve been there
  •   People who understand what you’re going through
Sign Up Log In
All Resources Treatments A-Z Personal Assistant Help Center Crisis
Powered By
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.

Why is HS underrated? Some members in the community by all account has experienced this monster for over half a century?

A myHSteam Member asked a question 💭
September 8
 · 
Reactions
myHSteam

HS is deeply underrated, and that frustration is completely valid. A big part of the problem is that symptoms are often hidden under clothing, making it easy for others — including some healthcare providers — to underestimate just how serious and life-altering it really is.

There are several reasons HS doesn't get the Show Full Answer

HS is deeply underrated, and that frustration is completely valid. A big part of the problem is that symptoms are often hidden under clothing, making it easy for others — including some healthcare providers — to underestimate just how serious and life-altering it really is.

There are several reasons HS doesn't get the recognition it deserves:

- Misconceptions about hygiene — Many people wrongly assume HS is caused by being unclean, which leads to shame rather than sympathy
- It's mistaken for something minor — It's often dismissed as "just acne" or a simple skin issue, when in reality it's a complex, chronic inflammatory condition
- Stigma from medical professionals — Some people have had doctors react with discomfort or misdiagnose them entirely, which discourages people from speaking up
- Invisible suffering — Because flares are hidden, others often assume someone looks "fine" on the outside, not realizing the pain happening underneath As one myHSteam member put it, "Just because I look OK on the outside doesn't mean I am not suffering on the inside and underneath my clothes."

The emotional toll is just as real as the physical one. Many people living with HS report feelings of shame, depression, and anxiety — not because of weakness, but because of years of being misunderstood. Living with this for decades, as many have, while still not being taken seriously? That's exhausting in every sense of the word.

Greater awareness and empathy can make a real difference — and communities like this one help make sure those voices are heard.

September 8
A myHSteam Member

I have had HS since I was 14. Right around the same time I got my first period. I am now 66. I noticed that during perimenopause it got worse and now here I am in post menopause and I’m getting in some unusual spots. When I went to the doctor in the 80s, they just called it acne then I heard it was called acne in versa. I have a doctor now. Who knows about it my Dermatologist. Sometimes antibiotic cream helps sometimes I just have to grin and Bear it. My sister also has it and my firstborn daughter has it pretty bad. She suffers pain painfully and now she just had a baby girl. I pray that she doesn’t have our jeans in her.

6 days ago
A myHSteam Member

I’m 🤔 HS is not studied enough and it certainly is way past the time that it should have been done years ago
There’s only a small 🥤 of people who actually suffer from it
🤔 but medical 🏥 professionals don’t understand it either and from my experience you spend more time trying to explain yourself to people and that of course take’s time and then you are running into years before you might find someone who actually knows what you are talking about and going through 😕
This goes back to our ancestors who probably had it in there family as well but again it was not recognised back then either
🤔 when I think 🤔 about it for example I am 🤔 oh 49 now and remember those people at school who you thought 💭 had ackney
🤔 well that could have been HS as well looking back at it
🤔 it’s definitely a inflammatory condition and from my experience and watching what came out of it
🤔 it will block anything up because it’s actually a very thick substance and it’s actually got like a acid sort of stuff in it
🤔 but is there such a thing as testing if it’s inflammation or not ??
🤔 ask yourself that question 🙋‍♀️ because my guess is that NO there’s NOT 🤔 🤔 🤔

September 8

Related Questions

View All
Bimekizumab Reduces Severe HS by 75% Over Two Years
Can Over-the-Counter Creams Help HS Scars?
5 Tips for Bandaging HS in the Groin (VIDEO)