Uncovered: My scars may be invisible, but my voice will be heard. The Whitney Shelby Story
Sometimes getting a diagnosis brings relief. Other times, it leaves you with more questions than answers. This week's Uncovered story begins at just nine years old, when a young girl started experiencing painful, boil-like abscesses she believed were connected to the changes happening in her body. For years, those symptoms were dismissed as ingrown hairs or something that simply ran in the family. Thirteen years later, she finally heard the words Hidradenitis Suppurativa. But instead of receiving guidance, reassurance, or even an explanation, she was left to figure out what those words meant on her own. What I appreciate about her journey is that it doesn't revolve around one miraculous treatment or a single defining moment. It's about slowly learning to understand her body, advocate for her needs, embrace her faith, and redefine what healing means to her. Her story reminds us that receiving a diagnosis is only one piece of the puzzle. What happens afterward, the education, support, compassion, and care, matters just as much.
Today, we're honored to share her story. Give it up for my girl, Whitney Shelby.
At first, I thought it was an ingrown hair or a boil, because that was what I had always been told these bumps were. I had no reason to think otherwise. The day I was diagnosed was actually the day I felt the most fear. The doctor looked at me and said, “You have HS,” and then proceeded to walk out of the room. That was it. I didn’t know what HS was. I didn’t know if it was terminal, if it was life-altering, what it meant for my future, or what I was supposed to do next. I was scared out of my mind because I had received a diagnosis without any real medical guidance or education about the condition.
I first noticed something wasn’t “normal” around the age of 9, when I started developing what looked like boil-like abscesses. At the time, I didn’t know anything about HS, so I simply thought they were boils or ingrown hairs. I also experienced hormonal changes very early because I was going through precocious puberty, so I assumed these occurrences were connected to the hormonal changes my body was experiencing. It took about 13 years to receive my diagnosis. What’s interesting about my journey is that I didn’t continuously experience flares throughout those 13 years. I had a few episodes around age 9, but once I went through puberty, I didn’t experience significant flares for years. Then, at 22, I experienced my first major flare after waxing for the first time.
To anyone newly diagnosed, I would say: No matter how you were diagnosed, when you were diagnosed, or what your diagnosis looks like, this is not your fault.
When the boil-like abscess didn’t go away and the pain continued to get worse, I went to the doctor because I needed to have it lanced and drained. That appointment changed everything. What I had always known as ingrown hairs or boils that “ran in the family” was actually a chronic inflammatory condition that I had never heard of before. That was my first real introduction to HS. Suddenly, so many things from my childhood started making sense. After my diagnosis, I initially went through steroid injections into the inflamed areas. They would help temporarily, sometimes for a day or two, but then I would find myself right back in pain. After going through seven or eight rounds of injections, I realized I needed to become more intentional about understanding my own body and exploring additional ways to support myself. I started researching herbs, supplements, nutrition, inflammation, and different ways I could support my body alongside my medical care. Turmeric and zinc became two things I explored as part of that journey.
For me, the biggest shift wasn't one specific herb or supplement. It was realizing that I could become an active participant in my own care. I could ask questions. I could research. I could pay attention to my triggers and patterns. I could learn my body instead of simply reacting to whatever flare came next.
Healing is more than just the absence of a flare. For me, healing is learning how to live in relationship with my body instead of constantly fighting against it. It is physical, emotional, mental, and spiritual. Healing has meant learning to give myself grace on the days when my body doesn't cooperate. It has meant rebuilding my confidence, learning that my scars and my skin do not determine my worth, and realizing that I can still live, love, create, show up, and pursue my purpose while living with HS. I don't think healing means that everything has to be perfect. Sometimes healing simply means that I'm no longer allowing HS to define every part of who I am.
On flare days, I try to give myself permission to slow down. I don't always have the energy to be “on,” and I've learned that I don't have to pretend that I do. Sometimes protecting my peace means staying home, resting, taking care of my body, limiting what I allow into my mental space, or simply acknowledging that today is a hard day without allowing that day to define me. HS has taken moments from me. It has taken comfort, spontaneity, and sometimes the ability to participate in things the way I wanted to. There have been moments where I've had to think about my body, my pain, what I can wear, where I can sit, how long I can stand, or whether I can physically make it through something.
But HS also forced me to rediscover myself. It taught me confidence. It taught me resilience. It taught me how powerful my voice could be. It made me realize that I could experience something painful and still find purpose in it. I've learned that beauty was never supposed to mean perfection. For a long time, society taught us that beautiful skin is smooth, clear, and untouched. HS challenged that definition for me. My skin doesn't have to look “perfect” for me to feel beautiful. I've learned to see my body for everything it has carried me through rather than only focusing on what it looks like.
One thing I've reclaimed is confidence.
HS doesn't get to decide whether I walk into a room confidently, wear something I love, take pictures, show up to an event, or use my voice. My scars may be invisible to some people, but my voice will be heard. My faith has helped me understand that my body is not my enemy. There have been moments when I questioned, “Why me?” and moments when I didn't understand why I had to experience something that could be so painful and isolating. Over time, my relationship with God has helped me shift from constantly asking why this happened to me to asking, “What am I going to do with what I've been given?”
I believe there is purpose in my story.
My body has carried me through things I didn't think I could handle, and my faith reminds me that resilience doesn't always look like being strong every day. Sometimes resilience is simply getting through the day and trusting that there is still more ahead of you.
I believe the HS conversation should come from a place of honesty rather than shame. I don't believe I owe someone my diagnosis before I'm comfortable sharing it, but when I decide to let someone into that part of my life, I want them to understand what HS is and how it can affect me physically and emotionally. HS has definitely challenged my confidence and made me question how someone else might perceive my body. But it has also taught me that true connection goes beyond what someone sees on the surface.
The right person isn't going to love me only on the days when my skin is clear. True connection means being seen in your entirety, including the parts of yourself that you may have once been afraid to show.
I've learned that advocating for myself doesn't mean I have to explain every detail of my body or my condition. There are times when I simply need to communicate what I need: flexibility, time to rest, accommodation, or understanding when I'm dealing with a flare. I've also learned not to apologize for having needs. Living with a chronic condition doesn't make me less capable, less ambitious, or less professional. I can be a strong professional and still have days when my body requires something different from me.
My experience has made me very aware of how important it is to advocate for yourself in medical spaces. Growing up, the things happening to my skin were often explained away as boils, ingrown hairs, or something that simply “ran in the family.” It took years before someone connected the dots. That experience taught me that I cannot always assume someone will automatically recognize what is happening with my body. I have to ask questions. I have to speak up. I have to research. And I have to trust myself enough to say, “Something isn't right.” Representation and education matter because people deserve to have their experiences taken seriously.
What helped me keep going was remembering that the pain I was experiencing was not the entirety of my life. There were moments when I was frustrated, exhausted, and wondering how many more procedures or painful experiences I could handle. But I had to keep reminding myself that this was one part of my journey, not the definition of who I was.
I also learned to celebrate small victories. Sometimes getting through a difficult appointment, making it through a painful day, or simply waking up and continuing forward is a victory. I've learned that movement doesn't have to look the same every day. There are days when my body can handle more and days when it needs me to slow down. I've had to learn the difference between challenging myself and ignoring what my body is telling me. I try to focus on movement that feels supportive rather than punishing. For me, staying active is about remembering that my body is capable of movement and joy, while also respecting its limits.
The biggest thing I wish people understood is that HS is so much more than a skin condition. It affects how you move, how you dress, how you sleep, how you work, how you socialize, how you see yourself, and sometimes how you allow other people to see you. And because HS isn't always visible, people don't always understand the amount of pain someone may be experiencing. You can look completely fine on the outside and still be fighting an incredible battle internally. If I could share one truth with the world, it would be this:
Please don't judge someone's pain by what you can see.
HS warriors are not dirty. We are not unhygienic. We did not cause this. And we should never have to feel ashamed of our bodies because they developed a chronic condition.
One of the biggest lessons HS has given me is that my story doesn't have to end where my diagnosis began. For a long time, I could have looked at HS as something that happened to me. Instead, I've chosen to look at it as something that became part of my story, but not the entire story. HS introduced me to advocacy, community, storytelling, and a purpose I didn't know I had. I've met people through this journey who understand things about me without me having to explain every detail. I've found community in people who once felt just as alone as I did.
And that's why I continue to tell my story.
Because if sharing my experience helps one person realize, “I'm not crazy. I'm not alone. This isn't my fault,” then everything I've experienced has a purpose.
My scars may be invisible, but my voice will be heard.
Whitney Shelby
For someone who had spent years trying to understand her body, those words should have been the beginning of a conversation, not the end of one. Her experience is a reminder that patients deserve more than a diagnosis. We deserve education, compassion, treatment options, and healthcare providers who take the time to help us understand what comes next. But there's another important message woven throughout her story that I hope every warrior takes with them. Your body is not your enemy. Living with HS can change how we dress, move, work, love, and see ourselves. It can challenge our confidence and test our patience. But our worth has never depended on having flawless skin or a body that cooperates every day.
Thank you for trusting Uncovered with your journey and for reminding us that healing can mean more than the absence of a flare. Sometimes it means learning to give yourself grace, speaking up for your needs, or finally seeing your body with compassion instead of frustration.
And to the warrior reading this who is newly diagnosed, still searching for answers, or learning how to navigate life with HS: you don't have to figure everything out today. Ask questions. Seek support. Advocate for yourself. And remember that your story is so much bigger than your diagnosis.
If you'd like to share your own experience with Hidradenitis Suppurativa, we'd be honored to feature your voice in Uncovered. Because behind every flare is a whole person, and every person deserves to be seen.
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