Uncovered: Peeling Back the Hidradenitis Suppurativa Scars & Reclaiming Our Stories

Knowing how isolating this condition is I felt a pull to share my personal Hidradenitis Suppurativa story and other warriors' stories. So, I decided to launch Uncovered. A safe space for those of us who feel invisible, misunderstood, ashamed and deeply dismissed. We make excuses for our absences instead of explaining our pain because too often we don't want to be a burden. Behind every scar and painful day, there is a whole real a** human, someone with dreams, resilience, love creativity and so much more than just HS. I spent years thinking I was dirty or better yet had an STD or somehow, I was the reason for what was happening to me, I thought this thing was only happening to me. Turns out 1 in 100 people have Hidradenitis Suppurativa. Crazy, right? So Uncovered is a dedicated sacred space to share the real experiences of those of us living with HS. I feel that it’s only right if we uncovered my story first.

If you asked me years ago before I ever had a name for my condition what my life living with this condition would turn out to be like, I’d probably say a disaster. Today I have a better, softer understanding of myself and my healing journey. And I have to thank my community for holding my hand through this new perspective on my journey. It was just a few weeks after my high school graduation when the first mysterious lump appeared on the lower part of my stomach. Then another. Then another. I told myself they were just klous(Haitian Kreyol for boils). Harmless, annoying but nothing serious. A friend noticed the proximity to my privates where a bump was on my lower tummy and called it mopyon (Haitian Kreyol for the clap). But then one showed up right on my vagina. I had no idea what was happening to my body, I only knew something was terribly wrong. By the time my first flare hit, I’d been navigating American life for only about four years. I had somehow survived high school as the fresh off the boat uppity girl who thought she was better than everyone else because she spoke 3 languages, though let's be real, I was struggling with that 3rd one and probably still do, lol. But nothing prepared me for when my family started saying I had an STD because of the foul odor in the bathroom after cleaning up after a flare. It was devastating. That was the beginning of me learning to suffer in silence. Learning all sorts of tips and tricks to hide my scars, the pain, the embarrassment, the shame and guilt. I got really good at hiding it, bathroom times turned into covert operations full of incense, air fresheners, the works. I’ve called them boils, body acne, butt acne, painful inner thigh bump. I spent years with no health insurance and no real way of finding out what was wrong with me. After constantly hearing people suggest it had to be an STD I eventually started believing it too. I spent years going to free clinics whenever I could, hoping someone would recognize what was wrong with me. I think I even prayed it was an STD because at least then I'd have an answer and maybe a treatment plan. But that moment never really came. HS didn’t just affect my skin. It affected the way I existed in my body. Shifting to a holistic lifestyle wasn’t a sudden or perfect fix, it has been a practice and continues to be. But it started innocently enough as a way to use healthier products on my skin, I didn't need to know the name of the condition to know that I needed to make a change. It started small by learning how to make my own bath and body products. I eventually went on an Indian Odyssey that transformed my life and catapulted me deeper into the holistic journey. In India I had the chance of a lifetime to apprentice with a traditional ayurvedic healer in the Himalayan mountains. The tiny steps along the journey have added up to the wellness advocate I’ve grown to be today. Through all the trials, tribulations, experiments and triumphs it took a TikTok video for me to learn the name of my dark lil shameful secret. It was Hidradenitis Suppurativa. While I was learning to live with a chronic condition before ever really getting any true confirmation, learning the name was a total game changer. Once I had a name and an official diagnosis, it was as if someone handed me a flashlight in a dark cave. The more I learned about HS, coupled with my knowledge about lifestyle changes and the ayurvedic healing system the more I was able to better focus my energy on healing and learning what works best for my body and how to help others. Which led me to creating this platform and the C.P.C. Ritual. HS has taken a lot from me over the years, moments of confidence, spontaneous plans and peace of mind. But it has also forced me to rediscover a fierce resilience I didn’t know I had. It taught me that even in pain, my body is still worthy of visibility, love and joy. And that realization is a big part of the reason why I co-created HSXY. The HSXY Calendar is an awareness campaign created to challenge the norm, the shame so many of us carry in silence. For so long I felt that my scars made me less beautiful, less desirable, less worthy of being seen. HSXY is a way of reclaiming that narrative. Through storytelling, spicy sexy art, vulnerability and sensuality we created a space where HS Warriors could exist fully and visibly instead of shrinking ourselves due to our condition. I pray that young girl fresh off the boat and fresh out of high school is proud to see just how good life got.

Your turn to be Uncovered

My story is just one thread in a beautiful, complex tapestry. There are so many facets to this journey whether you are navigating dating and intimacy, workplace struggles, being on biologics, parenting, the clinical realities of surgery, or finding peace through faith and movement. If you are an HS Warrior and feel called to share your truth, I would be deeply honored to hold space for you here. Please click here to read our guidelines and submit your story.

Thank you for being here reading my story. Thank you for refusing to be invisible anymore.