Shay
After years of not knowing and trying to figure out what was going on with my body, I came across this website, and I must say I’m so thankful for this website. I finally feel encouraged to go talk to my doctor and my family.
No more being silent about hidradenitis suppurativa (HS)
HS is nothing to be ashamed of—ever. The sooner you’re able to talk about it with people you trust, the sooner they’ll be able to understand and support you. See below for tips on how to navigate the HS conversation.
Here’s a conversation guide by people with HS for people with HS.
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.
Tips from others
Lori
I've been living with HS since I was 9. It has been a struggle for my whole family. I inherited it from my father, and my mom has been the biggest help anyone could ask for. I’ve learned that HS affects others, not just yourself, and to be thankful for their help.
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.
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