Ask the Advocate: Community & Advocacy

Finding community has been a source of strength and inspiration for so many folks with hidradenitis suppurativa (HS). Finally, a space where we speak the same language, people get what you are going through without having to explain yourself, and a safe space to build connections through shared experiences and storytelling. We asked our advocates what finding a community means to them and how they found their voice to advocate for a better future for all HS warriors.

Who has been your biggest support system throughout your journey with HS?

Katy: My parents have absolutely been the biggest support to me. My mom is the reason I have a diagnosis. My dad is the reason I felt courageous enough for my skin surgeries. My parents took care of me for months after 4 surgeries. They visited me daily when I was in the hospital. They encouraged me to go to therapy and supported it. My parents are the reason I even acknowledge that I have HS. They are the reason I am an advocate now.

I struggled with HS for 7 years but did not know what it was and mostly hid it. I was in denial about it and thought I could ignore it. My mom was the one who brought it up. She asked me about the scars and the stains on my clothes. She is the one who suggested we go to a dermatologist and made the appointment. That dermatologist diagnosed me. My mom has been my partner in health since then.

When my doctor told me that I did not have any treatment options left, my parents jumped into action to find other options. My dad learned about the CO2 laser procedures that some doctors could do to remove the affected skin for HS. He encouraged me to pursue this option and advocate for what I needed. I have valued his advice and support in my struggles with doctors and health care.

In addition to my parents, my closest friends have been a huge support to me. They have always supported me, but as I have opened up more about my experiences with HS and what I need, they have shown up for me more and more. They ask me about HS, they support my Instagrams on having HS, they listen to my rants, and they offer good friendship.

Rebecca: Honestly, all the amazing people that I have met through my Instagram, @rebs.journey. I created it when I got out of my first surgery for HS back in September 2020. I document my HS and health journey, and I have found some amazingly beautiful people who are on the same journey. It's been so lovely to talk to people who understand exactly what I'm going through, and the friendships I've made will last a lifetime! My amazing family has also been a huge support, and I couldn't do it without them either. I'm very lucky to be surrounded by lovely people who have compassion. Even though my family doesn't understand my pain, they are always willing to listen and learn about HS.

How has having a community of people with HS positively impacted your experience?

Tia: My experience, as a newly diagnosed patient, was that I was able to seek advice and support from someone with HS, which helped to manage my illness and to deal with my symptoms. I am thankful for that. By connecting with others in the HS community, I learned more about myself and others. By connecting with others in the HS community, I learned more about myself and others. Realizing that I was not the only person facing this issue brought me a sense of relief. Knowing that others had similar concerns made it easier for me to trust others to encourage and support me. Being able to express my feelings freely was easy for me since I knew I wouldn't be misunderstood, which also helped me find more effective ways of interacting with people and helped others grow and succeed.

Having learned about the many treatments available through the HS community and the latest information about HS, I was motivated to do my own research regarding care and medical decisions. As I connected with the HS community, I met people all over the world with diverse backgrounds, cultures, and experiences, which helped me relate to their viewpoints and remember we are the same but different as well. Through meeting many people from all over the world, I had the opportunity to build relationships with others. Lastly, I gain so much hope directly from seeing those with HS who live happier and healthier lives. Seeing their examples makes me realize that HS does not own me, giving me renewed hope.

Rebecca: Without the community of fellow HS warriors, there is no way I'd be as happy as I am today. Knowing that so many others know exactly what you're going through makes me feel so less alone. In my teenage years, I felt so isolated when I was hiding my HS symptoms from everyone (including my family). I felt like I was a freak and so different from everyone else, but now I see that that wasn't the case. The more we speak up about these things and raise awareness, the more people will feel more comfortable sharing their stories and we can all help each other!

Why did you decide to become an advocate for HSDisease.com?

Katy: I decided to become an advocate with HSDisease.com because I want to raise awareness of hidradenitis suppurativa, and I value the approach to chronic illness awareness through creating communities. I also appreciate the large reach that HSDisease.com has. It can reach many people who may not have heard of HS otherwise and those who think they are alone in their HS journey. Because of that reach, I hope to raise awareness of HS on a broader scale with HSDisease.com. My goal for HS advocacy is that every person has heard of HS. There are many rare chronic illnesses that people may not know a lot about but have at least heard of it. This creates a common place for people with the illness to have a conversation with people without. This is my hope for HS awareness. If people have heard of HS, it will make it easier for those of us to advocate for our needs, share our experiences, and get the care we need. It will hopefully alleviate the loneliness that many of us feel. Ultimately, I want people to reach diagnosis and treatment much sooner than what is the current average. I also hope to use this experience to work on my blog and Instagram to relate to people better and feel less alone personally.

Tia: I joined HSDisease.com because I enjoy helping people with HS. My life has been affected by HS, and, because of that, nearly 3 years ago I began to raise awareness about HS. This is an opportunity for me to contribute to the expansion of HS awareness, using the skills I currently possess and learning new ones from a group whose goals are aligned with mine. As a result, I get to educate African-American women, biracial women, and others more likely to get HS about its symptoms and how to handle it so that we can close the gender and racial gap in HS and help their families. Moreover, it enables me to interact with a diverse community of people and develop content that affects the HS community and allies and healthcare providers.

As a community advocate, I learn essential skills and am placed in situations where I must both take advice from others and provide it myself. Helping others gives me a priceless sense of fulfillment. I feel good knowing that I might have helped someone take charge of their health and build self-esteem by empowering them. Having the opportunity to work as a community advocate will allow me to develop my understanding, grow as a person, and learn more about HS. Last, seeing people from the HS community and communicating with them gives me a chance to discover new opportunities and expand my network with other people who have similar interests both within the HS community and beyond.

Rebecca: I decided to become an advocate for HSDisease.com because once I learned about what they do, I was astounded. As I mentioned, I felt so isolated for many years due to my HS. I sometimes felt that even the doctors didn't understand, but this is a fantastic community of fellow HS warriors, and HSDisease.com values our voices. It's fantastic to feel heard and seen after many years of feeling so alone and isolated and to hear others and share tips on our journey. I'm so happy to be a part of this wonderful team!