No More Being
Secretive. HS and
Relationships.

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.

Talking to your friends and family:

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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Talking to your partner/spouse:

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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Talking to your boss and coworkers:

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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Keeping yourself positive:

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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Tips from others

  • Shakeya
    I was recently diagnosed after two long years of pain, and I can honestly say it was a bittersweet relief. It’s overwhelming knowing there's no cure, and it beats me up sometimes. But when you have family that supports you, it makes the journey better.
  • Nick
    I had lived with this for a while and I hated it. It was hard to walk, run, and basically hard to do anything. Then I found help.
  • Taylor
    I have been dealing with HS for the majority of my life. I started off mild. Recently I was diagnosed after 12 years, and I kept those close to me well informed throughout my journey. It was comforting to have support and answers to this lifelong pain.
  • Crystal
    Having HS can be an embarrassing thing to talk about and share with others. I know it was for me. But keep your head up and be proud of who you are and become stronger from this. Educate your friends and family about HS and they will be understanding.
  • Nichelle
    Live unashamed. Remind yourself daily that you are a fighter. Once you are comfortable with your HS, it will become easier informing others.
  • Kerry
    My family is my rock. And when I’m with them, I’m not embarrassed. I’m me.
  • Sterling
    Don’t be afraid to speak out. I just talk about the disease and what I went through with it.
  • Elizabeth
    Invite your family member or support person along to the dermatologist. Because they’re going to have questions, and you might not be equipped to answer them.
SEE MORE >
  • Jorie
    My boyfriend actually saw it before I told him. He asked me what happened, and I told him. He didn't care at all. He didn't even ask if it was contagious, but I do think it made him feel better that it wasn't.
  • Kerry
    Personally, I was like, I have this. But it’s not contagious, it’s genetic. This is what I have and who I am.
  • Elizabeth
    My boyfriend is a nurse practitioner, so I can share with him. I just started off very small, hey I have a skin disease. It's not an STD. It's nothing I can control. And it leaves scars sometimes.
  • Elizabeth
    Sometimes at work I just have to be creative. Just sitting might hurt, so maybe lying on the ground might be better, or bringing some pillows, or having an ice pack that will bring you some comfort.
  • Elizabeth
    I try to take a nice bubble bath at least once or twice a week, just a little pampering. Do something for yourself. It’s so important.
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