Many of those suffering from Hidradenitis Suppurativa keep it a secret. However, one Black woman, Cydney Carter, decided to share her journey. She has created an amazing platform rooted in her advocacy for HS. As socialcydd on TikTok, she proudly shares her story and supports her fellow HS warriors. Carter informs the world about her experiences with HS to raise awareness. Her platform is a safe space for many, and she frees those living with HS of the isolation and fear that they may feel. We reached out to her to find out what it means to live with HS and how we can increase awareness about the condition.
BHM: When did you first notice the symptoms of HS, and how did it impact your life?
Cydney Carter: My symptoms started somewhere around the age of 12; around that prepubescent time is when I began noticing bumps on my inner thighs, and I had no idea what was happening to my body. I remember that for a while, I kept it to myself, but sometimes it would get so painful that I had to tell my mom.
BHM: How long did it take you to receive an accurate diagnosis?
Cydney Carter: I didn’t get diagnosed until around 2014 or 2015; at that time, I was a junior in high school. There was a 7-year gap between getting the symptoms and then getting diagnosed with HS.
BHM: Have you made any lifestyle modifications to manage your HS symptoms, and if so, what would you recommend to your fellow HS warriors?
Cydney Carter: the most significant lifestyle adjustment I have made thus far is ensuring that I am aware of the things that put me in a stressful environment. I know stress is a trigger for me, and life is just life sometimes, and you can’t help it. When my HS was at its worst, I was enduring so much trauma and mental overload. So now, I try to do my best to make sure that I am in open communication with my partner about my HS flares. I try to journal if I can about how I feel, and honestly, just talking about it has helped me in such a fantastic way. That is the advice I would give: find somebody you can talk about this with because keeping it to ourselves for so long is stressful, contributing to more flares. We all must have a safe space or person to talk about HS with.
BHM: How can people support their loved ones living with HS?
Cydney Carter: The best way to support someone living with HS is not to judge them. They can remind them that the scars on their body don’t define who they are and that they are beautiful. I think society is pushing so many cosmetic surgeries and procedures, and that is something that people with HS put in the back of their brains. We have already felt like we have imperfect bodies, so with society right now and the place we are in, it is essential to have someone in your corner who constantly reminds you and gives you that reassurance that you are perfect the way you are.
BHM: What is your opinion on the treatments available for HS?
Cydney Carter: I think learning and educating myself on what antibiotics do for those living with HS has empowered me to learn more about other treatment options. Initially, I thought antibiotics were solely used to treat infections, but they hold an anti-inflammatory property. So, educating myself more about the treatment options has given me more options as a patient and enabled me not to be afraid of everything. It is worth giving it a shot if it will lighten up the symptoms and ease your HS.
BHM: Do you think there is a lack of representation regarding dermatologists and doctors speaking about the condition and how it can be presented in patients?
Cydney Carter: Absolutely, there is so much stigma around the HS community about it being a black person’s disease, and honestly, the more we learn about HS, the more we see that it does not discriminate. The more we learn, the more I push to ensure we have inclusivity and the proper representation on all fronts, including dermatologists, patient care, and even the ER techs. So many people don’t talk about their HS until there is an emergency and they are sitting in an emergency room. We want to ensure we have the representation of doctors who know what HS is, not just in a dermatologist’s office but in the emergency room. We have so much work to do. We want to empower and educate HS patients so they don’t feel less than or unimportant as they may encounter doctors who don’t know about HS. Then, we also ensure we reach those doctors, dermatologists, and surgeons who can help us later in our journey.
BHM: When did you begin your journey on social media, and how has your impact changed your perspective on HS?
Cydney Carter: I began sharing my journey with HS about two and a half years ago. I was already sharing parts of my life on social media, but I felt like there was such a massive part of me that I was hiding. I would have to take pictures in certain positions; I didn’t want to show flares, and I didn’t want anyone to know what I was dealing with. I remember one day feeling like I did not want to do it anymore; I did not want to keep hiding a huge part of my life and myself. I remember sharing pictures and videos of my flares on TikTok, and before I knew it, there were so many people in the comments, and organically, it grew. Now that I have more followers, it is bigger than me. God has placed a responsibility on me to help bring awareness, and I am passionate about learning about HS. It turned from something I hid for so long and became my lifelong purpose.
HS is a very complex condition, but there is an opportunity for progress within that complexity. According to MedlinePlus, HS affects at least 1 in 100 people, and although it commonly starts during puberty, it can be seen in people of all ages. Those living with HS may experience a variety of symptoms and different progression rates.
By properly understanding HS and who it impacts, patients can advocate for continued research and clinical trials while uplifting the voices of those living with the condition as we strive toward finding more treatment options and a possible cure.
If you or someone you know is experiencing symptoms of HS, please seek medical attention. Raising awareness and limiting the fear surrounding HS is possible; we can take it one conversation at a time. To learn more about the condition, check out our story, Hidradenitis Suppurativa: Removing the Stigma and Understanding the Condition.
