HS Organizations That Help me feel less alone

I laugh now looking back on how many years I spent thinking I was the only one going through this. But such is life, we all think our struggles are unique, but they really are not. You just haven’t found your community yet. I can attest to how incredibly isolating HS is, especially in the beginning. I had never heard of or met anyone that was dealing with painful “boils”, drainage, scarring and the emotional exhaustion that comes with HS. When I was finally diagnosed, I felt more inclined to speak on it and discovered that my brother also has HS. My journey changed for the better when I discovered that there were entire communities, organizations and advocates dedicated to helping people living with HS. This platform exists to help you find support a lot faster than I did.

Whether you are undiagnosed, newly diagnosed, struggling emotionally, looking for education, searching for doctors or simply trying to feel understood, these are some of the organizations and resources that many HS Warriors, including me, have found helpful.

Hidradenitis Suppurativa is more than a skin condition. It impacts mental health, finances, mobility, sleep, confidence, work life, intimacy and daily comfort. And having access to reliable, supportive communities can make a huge difference. Healing becomes a lot lighter when you realize you don’t have to carry this all alone.

Organizations & Communities

HS Connect

HS Connect is one of the most community driven HS organizations out there. They focus heavily on education, advocacy, patient support and helping people access resources regardless of where they are in their journey. They also spotlight patient voices in unique ways. Through their platform you can locate an HS informed provider in your area, find educational articles, support groups, HS research updates and more.

Visit them at https://hsconnect.org

AHSID (Association of Hidradenitis Suppurativa & Inflammatory Diseases)

AHSID focuses on advocacy, patient empowerment, awareness, and improving quality of life for those living with inflammatory conditions like HS. One thing I appreciate about AHSID is their commitment to creating visibility around the emotional and social realities of HS, not just the physical symptoms. They also support patient initiatives, awareness campaigns and educational opportunities within the HS community.

Visit them at https://www.ahsid.org

Hope for HS

Hope for HS is a peer-led support organization that creates safe spaces for people living with HS. Sometimes what we need most is not another medical article or lecture, but rather someone saying “me too”. And Hope for HS provides just that in their support groups. There is something so freeing about being able to speak openly about our flares, dating and intimacy, surgeries and the works.

Visit them at  https://hopeforhs.org

HS Foundation

The HS Foundation is one of the leading educational organizations dedicated specifically to Hidradenitis Suppurativa research and awareness. Their resource catalogue can be especially helpful if you are looking for more medically reviewed information, research updates, information on comorbidities and treatment explanation. I really appreciate their push for awareness and physician education about HS which overtime will drastically reduce delayed diagnosis and misinformation from our healthcare providers.

Visit them at https://www.hs-foundation.org

Additional Helpful Resources

Online Communities

While social media is not a replacement for medical care, online HS communities can provide emotional support, practical tips from people who truly understand the day-to-day realities of living with HS.

Always use discernment online. Not every tip works for everybody.

Tracking your triggers

Tracking symptoms can help you to better understand your own body over time. The more you understand what triggers your flares, the easier it’ll be for you to fight back. Many of us living with HS have noticed patterns connected to stress, hormones, friction, heat, certain foods, emotional overwhelm, lack of sleep just to name a few. I want to take this moment to encourage you to focus less on perfection and more on awareness. Tracking your triggers does not have to be a fancy operation, it can be as simple as jotting things down in a notebook and paying attention to the next signs. 

Mental health support

Living with any chronic pain can take an emotional toll on us all, but when you add all the uncertainties that can come with HS, you better be sure life will be a rollercoaster. If your experiences are anything like mine you’ve probably experienced up and down anxiety levels, depression and all of those fun mental health issues, then mental health support should be an imperative part of your flare care. Support can look like therapy, journaling, color therapy, boundary setting, community. There is no weakness in needing support while carrying something so heavy. The goal here is learning how to support your body with more understanding, kindness and empowerment over time. You are not alone in this. I got you; we got each other.

My personal reminder for you

Let me start by saying, HS is not your fault, it is not a hygiene issue nor is it an STI. HS is a chronic complex auto inflammatory skin condition that causes extremely painful, recurring boil-like abscesses and lesions anywhere hair follicles are found even when they are barely visible. And HS can significantly impact a person’s physical, mental, emotional, social and financial well-being. There is no single perfect way to navigate HS. Some people choose medical treatment. Some people explore holistic support, while many combine both. There is no straight path to remission, but remission is real and possible. You deserve to have support, relief, compassion and resources that help you feel informed instead of feeling ashamed. You are not alone in this.

Sending healing vibes your way. -The EmpoweredHSWarrior