Uncovered: The Elizabeth “Rozy/Liz” Tassy Story

Welcome back to Uncovered, this week we meet Rozy who has lived with HS for more than four decades. From painful abscesses as a baby to becoming a nationally recognized advocate, model and creator, her journey shows us the dark side of what can happen when a disease goes untreated as many of us have experienced unfortunately. Her story is a little heartbreaking at times, but it is a testament to survival, self-advocacy and the power of finding community. Rozy choosing to become the person she so desperately needed after years of being dismissed, misunderstood, and going through trials and tribulations is inspiring. Today we are honored to hold space for Rozy.

I’ve lived with HS my whole life. My mom says I had abscesses even as a baby ,I was too sore to wear diapers. That’s over 46 years living in a body with hidradenitis suppurativa, and 32 years since my diagnosis. My first real memory of HS at age of 6 was walking to the park with my grandmother one summer, the bumps in my groin and inner-thigh folds were burning with every step. I didn’t have words for it yet. At 14, a dermatologist named Dr. Mary — whom my mom only found because she was an RN — finally gave it a name. Dr. Mary told me I would have to fight to advocate for myself just like anyone with a well-known disease. I didn’t understand what she meant that day, but I knew my life had changed.

Shortly after came my first major surgery to remove the “boils” all over my body. Then I went back to a high school with no air conditioning, stinky, wet bandages, every wound getting worse instead of healing. I couldn’t bend my arms because of open wounds in my creases. I hid in the bathroom crying. At 14, I was completely dissociated from myself, and my mental health went to a very dark place.

The average person with HS waits 7 to 10 years for a diagnosis, and I was one of the rare ones who got answers at 14, and it STILL wasn’t enough, because there was no roadmap after the diagnosis. For years I moved through different cities and climates, sitting in front of dermatologists who had never heard of hidradenitis suppurativa. I’d tell them my diagnosis, and they still didn’t know how to treat a body at Hurley Stage III. I was treated like I was dirty, like I was the problem. When I finally searched the word in the early 2000s, all I found was “the hidden disease” and “severe acne.” So, I hid too. I stopped seeking care and self-managed alone for years, bandages, ointments, layered clothing, a freshly sanitized sheet every single day. The shower was my best friend and my worst nightmare. HS doesn’t just affect your skin it dismantles your entire life if it goes unsupported. What followed my diagnosis were years of eating disorders, running away, failing school, substance use, and suicide attempts trying anything to make the pain of rapidly spreading HS go away. Raised by a single parent who worked constantly, I was head of household while she was away. I was emancipated at 16, barely graduated, and at 17 was forced into the real world with an unknown, misunderstood disease working full-time, delivering mail to 200+ people a day while flaring, terrified of being noticed, hearing the whispers, crying in bathrooms.

By 18 I’d had a miscarriage, and after a traumatic clinic visit, I learned I would never conceive again. I was fired repeatedly, filed multiple bankruptcies from medical debt, experienced homelessness, lived in vehicles, lost family and friends, survived two divorces, and was labeled “the problem” by both sides of my family. I was preyed upon by people who exploited my instability in ways I can never get back. When I called my absent father during a suicide attempt, he told me to find a hobby. I’ve had 3–4 HS surgeries and somewhere between 30 and 50 ER visits for incision and drainage with packing, the most horrific experiences of my life.

HS was the first chronic disease that created a massive dissociation from wanting to live in my own skin. But I am still here.

What has helped me along the way? Years of therapy, in many forms, I invested deeply in myself to become the healthiest version of me. Finding a care team who actually understands HS. Learning wound care and self-management that works with my body instead of against it. And most of all: community. Finding other HS warriors who understand without explanation changed everything. In the HS Connect mentee group, I remind my HS brothers and sisters who they REALLY are when this disease tries to make them forget. If you’re still searching for a dermatologist who actually knows HS, the Dermatologist Finder at hsconnect.org is a real first step toward finally being seen.

HS is autoinflammatory. It is not a hygiene problem, and it is not the patient’s fault. I wish clinicians understood that undiagnosed, unsupported HS costs people their jobs, housing, relationships, fertility, and sometimes their lives. We need fewer insurance barriers to biologics, and we need providers who see the WHOLE person sitting in front of them, not just the wounds.

Today I am a content creator, a professional disabled model, an aspiring author, and a 2026 HS Connect Advocacy Mentee. I was scared for so long to be vulnerable about the life I worked so hard to hide. Now I want to be the LOUDEST in the room. The beauty of my story is that it connects with warriors across a wide range of experiences, meeting them exactly where they are.

If you are in the dark place I once was: you are not your diagnosis, you are not your hardest days, and you are not alone. (And if you’re standing at the edge, please reach out, call or text 988, anytime.) Better days and a better quality of life are possible. I’m living proof. 💜

                                                                                      Elizabeth “Rozy/Liz” Tassy 💋

Your Turn 

Rozy’s story reminds us that HS touches every part of our lives, from childhood to mental health, careers, relationships and even housing. I too know what it is like to live with HS while being homeless and it is not for the faint of heart. Thank you, Rozy, for trusting Uncovered with your story. Your courage to speak openly about the chapters many people would rather hide creates space for others to believe they can survive theirs too. If you’re reading this while feeling overwhelmed by HS please remember Your diagnosis is not your identity, your hardest days are not your whole story, and there is hope beyond this moment. If you’d like to share your own journey with Hidradenitis Supputrativa, we’d be honored to feature your voice in the Uncovered series. Every story shared helps someone else realize they are not walking this path alone. 

Keep up with Rozy aka Liz Tassy 

IG/TikTok/Youtube @modelplusme

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Sending healing vibes your way. The EmpoweredHsWarrior