How Do I Connect With Other People In The Hidradenitis Suppurativa Community?
Last updated: March 2022
Many people with hidradenitis suppurativa (HS) have told us that it can be challenging to find other people in your community who truly understand your experiences with HS. Our goal at HSDisease.com is to connect people with HS and caregivers with one another and build an online community that helps bridge that gap.
How do I connect with others on HSDisease.com?
Our Community Hub is a great place to see what people are talking about in the HS community. Here, we share trending topics and the latest updates, and we have a spot where you can connect with other members. It is our one-stop shop for all things HS!
Most people also start by reading our articles about life with hidradenitis suppurativa. Most of the articles in this community are written by an HS warrior. Additionally, our Editorial Team brings the latest news and research updates to the community.
Articles recommended by our readers:
- Stigma and Shame: How It Has Affected My Life
- How Being Desperate for Relief From Hidradenitis Suppurativa Ruined My Womanhood
- So You Think You Have HS – Now What?!
- You Have Boils? I Get Those Too!
Stories, forums, and more
Articles are just the tip of the iceberg! Everyone who is affected by hidradenitis suppurativa has their own unique story to tell. In our Stories section, anyone can share what their experience with HS has been like, as well as read stories from other community members.
You can also use forums to ask questions you may have about HS or its treatments. Reaching out on forums is a great way to get answers to any of your “Is this normal?” questions and hear directly from those who also have HS.
Our contributor team at HSDisease.com writes so many relatable articles about life with HS. If an article strikes a chord with you, you can feel free to comment and share your thoughts.
What if I want to communicate privately?
Some aspects of hidradenitis suppurativa can be hard to openly discuss on the internet. You might worry about sharing too much on social media. What if people from your personal life see? But you still want to connect with others. If you are concerned about privacy, it is easy to stay anonymous on HSDisease.com by choosing a username that does not reveal any personal information. This is the best way to engage without revealing who you are.
Creating an anonymous username
Choose a username that does not use your first and last name or any nicknames that might easily identify you. Then register following these few simple steps:
- Click to register for HSDisease.com.
- Enter your anonymous username.
- Enter your email address. Your email will not be visible to other users on HSDisease.com. Your email will be used to log in to your account and receive your HSDisease.com weekly newsletter.
Using HSDisease.com anonymously
Once you log in using the email for your anonymous username, you will be able to participate on HSDisease.com completely anonymously. You can share as much or as little as you want about your experience with HS. If you choose to remain anonymous, you will want to make sure you do not post anything that includes personal information about your identity. Some examples might include:
- Your location (generally mentioning your state or country is fine!)
- Full names of your family members or friends
- Your place of employment
- Detailed personal or medical information
Thank you for joining us
Thank you for being a member of HSDisease.com. We hope you enjoy connecting with others in the HS community! 💜
When you need to vent about HS, who do you turn to first?