Community Views: What I Wish Others Knew About Hidradenitis Suppurativa
Hidradenitis suppurativa (HS) can cause symptoms that are painful and embarrassing. Itchy or painful bumps near the groin, buttocks, armpits, and genitals can return again and again. There can be a discharge of pus as well as odor. Even doctors may not recognize HS at first. Getting the right diagnosis can take up to 7 years.1
Everyone who lives with HS knows how it feels when others have never even heard of the health condition they struggle with. Recently, we asked you: “What is something you wish others knew about HS?” More than 30 people responded. Here is what they wrote.
HS can result in scars and cause fatigue
When HS disease flares, abscesses, and exhaustion can result. All of this can take a huge toll on people who live with this condition. Sometimes people with HS are too tired to see their friends and family. Sometimes scarring from abscesses leaves them too embarrassed to let others see their skin even after a flare-up has passed.
“The toll of constant infections and pain and terrible scarring is horrible. Antibiotics definitely help me, thank goodness, but HS never goes away entirely.”
“I wish people knew that I would love to spend time with them, but sometimes my body just won’t allow it.”
“I wish others knew that it’s so much more than abscesses and scars. It affects us so much more than what can be seen on the surface. That we live our lives in constant pain and sickness. That most doctors don’t even know it exists. That the medications don’t help all of us. That we need a cure!”
HS affects all areas of a person’s life
HS can affect your social life, job opportunities, and emotional well-being. It can reduce your chances of finding a rewarding job, and it can lead to depression and anxiety. People with HS can feel socially isolated.
“I wish people would understand the mental toll it takes on you to have this condition, and that it can be incredibly draining and utterly depressing in its worst moments. The cysts can seriously be debilitating and leave you unable to do even basic things. but most of all, I wish it was discussed more how common this is and that none of us are alone in our experiences with it.”
“I wish others better understood the mental effects on someone with HS. Dealing with this daily chronic disease is exhausting, and it affects every part of my life.”
Making lifestyle changes to avoid flare-ups is hard
Certain situations can cause a flare-up of HS. For example, people who are overweight and lose weight may reduce the number of flare-ups. Quitting smoking may also reduce HS flare-ups.2 But making lifestyle changes like these is not easy.
“I wish people understood how many different things can affect flares – sleep, food, stress, etc.”
“I just wish people understood what I have to go through. I’m disabled and trying to lose weight, not the easiest thing to do, I’ve almost lost 100 pounds so far, but I’m still getting flare-ups.”
We want to thank the members of our community who shared with us. Your words can help others with HS! By speaking about this condition, we raise awareness and reduce the stigma.
Have you taken the Hidradenitis Suppurativa In America survey yet?