My name is Faith, and I was born with tricuspid atresia and hypoplastic right heart syndrome (HRHS) —a rare combination of congenital heart defects. By the time I was five years old, I had already undergone three open-heart surgeries. My childhood was shaped by hospitals, medical routines, and a constant awareness that my body needed extra attention and care.
I was lucky in many ways. My family created a space for me to rest and take care of myself. I wasn’t pushed to perform or act like I could keep up with everyone else. There was an understanding that my needs were different, and I was given room to be soft, to be still. But even in that supportive environment, the focus was almost entirely on my heart. It was the most visible, most serious thing happening with my body, and understandably, it got all the attention.
Still, I knew from an early age that something else didn’t feel right. I dealt with pain that didn’t make sense, joints that moved too much, fatigue that went far beyond what I thought was “normal,” and stomach issues that just got chalked up to eating disorders. Whenever I brought up these other symptoms, they were often dismissed or folded into the narrative of my heart condition. But that never really explained what I was experiencing.
I spent years carrying the weight of symptoms I didn’t have names for. I started to question whether I was just too sensitive or overreacting. It wasn’t until my late twenties that I was finally diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS). The diagnosis was validating—but also overwhelming. Suddenly, I had answers, but I also had a new condition to manage on top of an already complex medical history.
Living with both hEDS and a rare heart defect means navigating a lot of gray areas. These two conditions interact in ways that aren’t well studied. There’s not really a specialist who truly understands both and if they’re connected, so I’ve had to become my own coordinator—connecting the dots between symptoms, researching endlessly, advocating in appointments, and pushing back when something doesn’t feel right. I’ve learned to trust my gut more, and to keep speaking up even when I feel dismissed.
At the same time, I’ve spent the last decade building a creative career I deeply love. I’m a hairstylist and makeup artist, and I’ve been in the beauty industry for over ten years. My work lets me connect with people in such a meaningful way—to help them feel confident, expressive, and seen. I specialize in vivid colors and have truly found my passion.
What most people don’t see, though, is how physically demanding beauty work can be—especially when you live in a body that requires constant energy management. Standing for long hours, using my hands repetitively, lifting and twisting, maintaining a fast pace—it can all be brutal with hEDS and a heart condition. I’ve had to learn how to pace myself, how to build flexibility into my schedule, and how to design my work around what my body can actually handle.
That also means letting go of the pressure to be constantly booked, constantly moving, constantly grinding. The beauty industry rewards hustle, perfectionism, and aesthetics above all else, but that doesn’t always leave space for people with disabilities to thrive—whether as stylists or as clients. That’s why I’ve started speaking more openly about my experiences, both in the salon and online.
I’m working to help make beauty spaces more inclusive and accessible—for stylists and for clients with disabilities. Accessibility isn’t just about having a ramp at the door (though that matters); it’s about understanding fatigue, sensory needs, mobility limitations, chronic pain, and how to make someone feel safe and welcome in a space that’s often centered around image. I want to challenge what professionalism looks like, what beauty looks like, and what success looks like—because disabled people belong in these spaces, too.
Disability Pride Month, for me, is about truth-telling. It’s about saying: I live in a body that works differently, and that doesn’t make me broken or less valuable. My conditions don’t define every part of me, but they do shape how I move through the world, how I work, and how I relate to others. I’ve learned to be more patient, more creative, and more intentional—because I’ve had to be. And that’s something I’m proud of.
There are still hard days—days when my body feels like it’s working against me, or when I’m so fatigued I can barely function. There are days when navigating the medical system feels like a full-time job. But I’ve stopped seeing those days as failures. Rest isn’t a setback; it’s part of my rhythm. Adaptation isn’t weakness; it’s strategy.
I’m proud of the life I’ve built. I’m proud of the community I’m growing. And I’m proud to show up exactly as I am—not in spite of my disability, but with it fully in view.
