More Than My Body: 

A Teen Warrior’s Journey with HS, Mental Health, and Healing

Pain Without a Name

When Cassandra first started feeling pain and noticing swelling in her vulva at 13, she didn’t know what was happening. She didn’t have the language to describe it, let alone the support system to help her through it. She feared it was an STD and tried to obtain immediate medical care. Living in a foster home at the time, Cassandra remembers asking to see a doctor and being brushed off. “Yeah, I’ll take you another time,” she was told. That appointment never came.

For years, Cassandra carried that pain silently. The physical symptoms intensified, but the emotional wounds cut deeper. “I used to just walk around and deal with it,” she recalls. “At some point, when you have a flare-up, you just get used to it.”

The Turning Point

It wasn’t until she spent two weeks in a respite placement—what she calls her turning point—that someone finally listened. She shared her symptoms with her soon-to-be forever family, and for the first time, she was met with instant concern. “If it hadn’t been for that two-week respite, I wouldn’t be where I am now,” she says. “It changed everything.”

More Than a Diagnosis

But Cassandra’s story isn’t just about a diagnosis or a chronic illness. It’s about the intersection of trauma, identity, and healing. As a young Black woman and former foster youth, Cassandra experienced layers of abandonment that led her to seek love and validation in painful ways. “When I was younger, I thought the only way to be loved was to offer my body,” she shares. That belief led her down a path of early sexual experiences that, in retrospect, she recognizes were tied more to survival than desire.

Redefining Love and Self Worth

It took Cassandra years to untangle the connection between her need to feel loved and the ways she had been taught to seek it. She now understands that she was in pursuit of a basic human need, to be loved, and that that chase drove many of her choices. She’s actively working to replace self-blame with self-love and compassion.

HS, with all its physical and emotional complications, became a mirror. “It’s made me question how I’d be treated in relationships, whether I could really be loved if someone saw me during a flare,” she admits. But it also became a catalyst for healing.

Now 19 and in college, Cassandra is learning to care for her mind as much as her body. “I’m more than just my body,” she says. “I’ve been learning that for the past six years.”

Today, she’s a proud advocate, an HS Connect mentee, an up-and-coming social media influencer, and a vibrant voice from Brooklyn, New York. She still has flare-ups. She still struggles with food triggers and feelings of being different and left out. But, she’s also proud to be in remission—both from HS flare-ups and from self-harm. She’s currently one month into that healing milestone, and noted that she’s not ashamed to talk about it. “If I’m open, maybe someone else won’t feel so alone,” she says.

The Power of Community

Cassandra credits much of her progress to community. “HS Connect really opened my eyes that there is a whole community out there,” she says. “It was the first time I felt like I wasn’t alone in this.” Being surrounded by people who understand the realities of HS, both emotionally and physically, has helped her unlearn isolation and rediscover her voice.

Cassandra is planning to continue her healing journey by finishing her current IOP program, continuing therapy, living life out loud and unapologetically, and actively choosing to face her trauma head-on. “Healing isn’t linear,” she says. “I’m glad I’m in remission right now. I’m proud of myself for doing my IOP. I feel like I’m getting better, little by little.” 

A Message to other Teen Warriors

Living with HS is hard enough as it is, but some may argue it is even more difficult during the teen years. When asked what she would tell other teens living with HS, Cassandra doesn’t hesitate. “Even if people don’t understand it right away, you’ve got to speak up for yourself,” she says. “Nobody knows what you’re going through like you do.”

There are several ongoing clinical trials for Teens with HS – check them out here.