People with HS tell their stories.
Learn how they handle daily life with the disease.
No More Being
Hidradenitis suppurativa (HS) can really get in the way of relationships with your family, your friends, your partner or spouse—even people at work. The content here comes from real HS patients and HS patient advocates. From their experience and insights, get ideas on how to make these conversations easier. They tend to advise that one of the best ways to build understanding starts with having a dialogue and ending the secrecy.
DON’T KNOW WHAT TO SAY?Here’s a conversation guide
by patients for patients.
It’s really hard to tell people you have HS, much less have an ongoing discussion about it. Here are some ways to talk about HS with the important people in your life. Remember, you can share as much or as little as you like, though most people with HS find that being open and honest is a good idea.
Your parents and best friends are probably the people closest to you and the ones most likely to offer support. That’s why it’s so important for them to have an understanding of HS and what you’re going through.
In most cases, honesty is the best policy for those in your inner circle. You can take it at your own speed and decide what you want to talk about. Here are some pointers:
- Don’t be rushed. Pick a time and place where you can have a relaxed conversation.
- For your parents, maybe start with saying you know that they love you and you love them. You want to share what’s going on with your body.
- For friends, think about telling the person you’re closest to. Start out small without going into great detail and see how they respond.
- Be prepared to answer their questions about HS. Show them sections of an HS website—like this one.
- Common questions they may ask include: Is it contagious? (It’s not.) Is there a cure? (No, but there are treatments.) Will it ever go away? (No, but new symptoms appearing after 55 is rare.)
- When you do go to the dermatologist, invite your parents along, so the dermatologist can also answer any of their HS questions.
- Thank them for being a big part of your support team.
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Being open and honest with your significant other is a good way to start. They might already have an idea of what’s going on with you. Here are some ideas our HS patients have used to get the conversation started:
- Start off small, saying you have a skin disease.
- Assure them that HS is not contagious; it is not an STD.
- Tell them that HS is a chronic inflammatory skin condition that you can’t control.
- Let them ask questions and maybe look at a website together that explains HS.
- Take the discussion at your own speed, talking about as much as you’re comfortable discussing. This probably isn’t a first date conversation.
- Sometimes your symptoms might make you feel low, so talk about how they can support you when you’re feeling down.
- Thank them for being willing to help out with household chores when you’re not up for doing them.
- Ask them for help dressing wounds in places that are hard for you to reach.
- Let them know that their love and support give you hope and help you go forward.
- Share your feelings about intimacy and how it can be painful when you’re having a flare‐up.
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Sometimes, the symptoms of HS can have a big effect on your workplace interactions.
- Have your doctor write a letter informing your supervisor about your condition.
- If possible, work an arrangement that allows you to work from home when your symptoms are bad.
- Come up with a more flexible work schedule if you need it.
Again, it's up to you how much you think you should share. Here are few ideas for talking to coworkers:
- As you get to know your coworkers, think about sharing more with them.
- If you have one coworker you're close to, they can be someone you confide in. They will understand that having HS doesn’t make you any less capable.
- If your coworkers are aware of HS, they'll understand the times when you're feeling discomfort and how you might have to work around it.
- Reassure your coworkers that HS is not contagious and not because of bad hygiene.
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Physically, the symptoms of HS can be tough. That’s why you can't let HS drag you down emotionally. There are ways to help you feel good about yourself, to feel confident and positive.
Here are a few more ideas:
- Feeling good about how you look can start with clothing you're comfortable in. If it feels good, wear it.
- Even if you're hurting, taking the time to fix your hair or do your makeup may help you feel better.
- Take some time for yourself every day. Do something that makes you happy. Get your favorite drink from the coffeehouse. Binge‐watch a great TV series.
- Try practicing meditation; it may have a positive impact on how you manage your stress.
- Consider volunteering your time to others; it may be beneficial to both your mental and physical health.
You might even have a couple of your own tried-and-true methods to keep your spirits up. Feel free to share them.
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Elizabeth's HS Story
Elizabeth tells of her history of flare-ups, her nursing career, and support from her parents.
TRANSCRIPT FOR ELIZABETH VIDEO:
[Graphic Opening (Words appear over black brick background)]
[Elizabeth:] Being Secretive
[Sterling:] Bad Solutions
[Kerry:] Being Silent?
No. No more BS about HS.
[Elizabeth:] Hidradenitis suppurativa is—if I could put it in one word: it’s awful. I had a really nasty flare-up under my arm about the size of a baseball. And, it ruptured in class…there was pus and blood. I remember my classmates all saying, "Oh my gosh, what is that smell? It is so gross in here." And, I realized it was me. My name is Elizabeth, and I live in beautiful Tampa, Florida. I’m currently a nurse. I work in the emergency room at a local hospital. And I go to school getting my advanced registered nurse practitioner degree. I spend a lot of time studying; a lot of dedication to what I am learning. I first started experiencing symptoms of HS probably around 13 years old. I would get what I thought were pimples, just really bad-looking pimples, and they would be horribly painful. My parents knew, but that was all who knew. My mom took me to the dermatologist. The nurse comes in. I show underneath my arm. She says, “Oh my goodness, you have hidradenitis suppurativa. I know you have it, because I have it, too." And she walked over to me and hugged me and said, “I’m sorry, there is no cure.” So, I have this mystery illness that no one knows anything about. I’ve had doctors who have basically put the blame on me; that it is my weight, my lifestyle choices, that I caused this disease. I remember just feeling very alone and very scared that there was nothing that could be done for me. And I would have to live with this for the rest of my life. But I can’t just sit in bed all day long in pain and in misery and let this disease control my life. I love to keep an active social life. I love to go out with my friends and go to hockey games and go to the movies and go shopping. 'Cause I only have one life to live. If you were just diagnosed with HS, I think the message that I would have is to not lose hope and to find that doctor who knows about HS. I look at it now as a fight, and I am winning this fight.