The Benefits of Online HS Communities
Last updated: March 2023
Before becoming part of the online hidradenitis suppurativa community, I really felt alone.
I’ve said it before and I’ll say it again, HS isn’t the most pleasant thing to talk about. It takes a long time to be comfortable enough to be open about it. While HS isn’t rare, it’s rarely talked about and that doesn’t just apply to society as a whole. That goes for an HS patient’s world too. A lot of HS Warriors don’t feel like they can talk about the disease.
But can you blame patients for not wanting to talk about the abscesses and boils in their most private and sensitive spots? It’s extremely hard to open up sometimes.
It can be hard to talk about hidradenitis suppurativa
You get worried that people might think you’re gross and disgusting for having pus-filled abscesses. You might get afraid that they’ll blame you for it because of what you might have eaten or how much you weigh. You might not want to tell people because you’re afraid of being a burden to them and you just want to be normal. You might be scared to talk about it because you don’t want to make people feel guilty and you aren’t looking for sympathy.
That’s only to name a few reasons, but there’s so much more going through an HS warrior’s mind as to why they might not want to open up about it.
But not opening up and talking about HS can be dangerous and can lead to dark feelings of alienation. You might start feeling alone, misunderstood, and bad about yourself. Bottling up all your negative feelings about yourself and your HS can lead to even worse mental and physical health problems so please don’t bottle it in. If you don’t feel comfortable talking to anyone in your personal life about it, this is where the online HS community comes in.
Fellow HS warriors just get it
No one knows what you’re feeling and dealing with better than someone that’s been through the same situation too. I love my family and friends more than anything and I’m so grateful that I can go to them when I’m flaring and upset. But no one truly knows how I’m feeling better than someone that has felt what a flare feels like. Only a fellow HS warrior will know the struggle of trying to go to the bathroom with a groin flare. Or the emotional and physical pain of an I&D. Or the immediate feeling of dread when you feel that first sign of a flare coming.
Not only do they know your pain and struggle, but they might have recommendations on how to feel better. I’ll say it one more time: No one knows what you’re feeling and dealing with better than someone that’s been through the same situation too.
You are not alone
Don’t be afraid to scroll through #HidradenitisSuppurativa on social media, join an online support group, or an online HS community like HSDisease.com. I personally attend a virtual support group every month and it’s one of my favorite nights. Even if you don’t want to share your story, it’s so comforting to hear the stories from others. It truly helps you feel so much less alone.
But in all seriousness, please remember that you aren’t alone. There’s thousands of HS Warriors online and on social media that are there for you and are there to listen. If you don’t believe me, scroll through the Hidradenitis hashtag on social media and just see for yourself. Don’t be afraid to join an online community. It can truly help so much.
When you need to vent about HS, who do you turn to first?
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