Uncovered: The Voice I Found Through HS The Dawmart Castillo Story

Sometimes the hardest part of living with Hidradenitis Suppurativa isn't just the pain. It's having to carry that pain while the rest of the world expects you to keep going. Just because your world stops, does not mean the rest of the world will stop with us, so as warriors we find ways to keep going.

For this week's Uncovered, we're sharing the story of a warrior who spent years searching for answers while navigating motherhood, college, a career in healthcare, and the emotional weight of living with an undiagnosed disease. From the first time I've met her, Dawmart has always been a kind, loving individual. It is my honor to hold this space for her. Her story is near to my heart because I too went on thinking I had an STD/STI for a very long time, which delayed us in getting answers that would allow for us to get relief sooner. She learned how to smile through pain, show up when her body was struggling, and hide the parts of her life she didn't know how to explain. Like so many of us, she spent years questioning her body, wondering if anyone would ever truly understand what she was experiencing.

But what makes her story so meaningful is what happened when she finally found people who did. Through the HS community, she discovered more than she could’ve wished for, more than support. She found her voice, learned to advocate for herself, and eventually began using her experiences to help others do the same. Her journey reminds us that sometimes being heard for the first time can change the way we see ourselves and what we believe is possible.

This is her story.

The Voice I Found Through HS The Dawmart Castillo Story

For a long time, I didn't have a name for what was happening to my body. I just knew something wasn't right. My first noticeable HS flare happened when I was 18. I was a young mom, and looking back, I may have experienced symptoms even before then. I remember constantly being prescribed antibiotics for what doctors called “boils.” At the time, I had no idea those moments could have been signs of something much bigger.

For years, I honestly thought I had an STD. I remember going from provider to provider, trying to understand what was happening to me, only to keep getting sent back to the gynecologist. I felt confused, embarrassed, and frustrated. When you don't have answers, it's easy to start believing that maybe something is wrong with you.

After my second pregnancy and giving birth to my son, my HS became significantly worse. The flares became more difficult to deal with and started appearing in both of my armpits. The pain and limited movement made it difficult to even hold my son at times. After years of living with painful and confusing symptoms, I knew I couldn't keep going without answers. That was what finally pushed me to find a specialist.

In 2020, I made an appointment with a doctor who had some knowledge of HS. I actually brought up HS myself before he could even start speaking because I had started learning about it and wondered if it could explain what I had been experiencing for so many years. Once the provider confirmed that it was Hidradenitis Suppurativa, I finally had a name for what I had been experiencing. After years of questioning my body and wondering what was happening to me, having an answer brought so many emotions. There was relief in finally knowing, but also anger and sadness when I thought about how many years I had spent without a diagnosis. It didn't erase everything HS had already taken from me.

HS took so much of my confidence. It affected my relationships, my physical ability to do everyday tasks, and the way I saw myself. It took away parts of my young adulthood and motherhood that I wish I could have experienced differently. I became isolated and struggled with my mental health because I couldn't dress the way I wanted or simply enjoy being outside without thinking about my skin, my pain, or what other people might see. I struggled while going to college to become a Radiology Technologist. Moving equipment and machines is part of my everyday career, and there were times when my body made those things incredibly difficult. I was building my career and my future while silently dealing with a disease that affected my ability to physically do what I needed to do.

I think about becoming a mother and having a newborn son and how much I wanted to enjoy those moments. Instead, HS was always somewhere in the background. It affected me in ways I didn't always know how to explain, and the truth is, I became really good at hiding it. I would smile, show up and tell everyone I was okay. But inside, I was struggling.

One of the biggest turning points in my journey was finally speaking up and finding the HS community. Finding people who understood HS without me having to explain every part of it made me realize that I wasn't alone. Being part of this community gave me a family I didn't even know I was missing. I found people who understood the pain, embarrassment, isolation, and emotional weight that comes with living with HS. They reminded me that I didn't have to go through this alone and showed me the power of sharing our stories and making space for one another. Through that community, I also learned how important it was to advocate for myself. Speaking up doesn't always mean being the loudest person in the room. Sometimes it means saying how I really feel, asking for help when I need it, asking questions, or saying, “This isn't okay. I need you to listen to me.”

The more I advocated for myself, the more I realized that my voice could help someone else too. That's what led me to become a patient advocate. After several incision and drainage procedures and eventually having a deroofing procedure, I continued learning and speaking up for myself. Advocating for myself gave me the courage to explore different treatment options, find the right HS specialist, and work toward finding a treatment that has helped me experience fewer flares and, sometimes, no flares. But my journey didn't stop with finding treatment. It grew into something much bigger.

Today, advocacy has become a huge part of my life. Through the HS community, patient organizations, foundations, events, support groups, and social media, I've had the opportunity to connect with other warriors, share my story, and help create spaces where people living with HS can feel seen, heard, and understood.

Being involved with the HS community has shown me that sometimes the most powerful thing we can give another person is the feeling that they are not alone. I've had the opportunity to stand alongside other warriors, share our experiences, educate others about HS, and help shine a light on a disease that is still so misunderstood. Every time I tell my story, I think about the younger version of myself who spent years wondering what was wrong with her.

I wish she could have found this community sooner. The more I learn, the more I want to share. Every piece of knowledge I gain that could potentially help another person means something to me. Being able to use what I've learned from my own journey to help someone else feel less confused, less ashamed, or less alone is an incredible feeling. Knowing that my voice and my experiences can help another person find the courage to advocate for themselves is what keeps me going.

If there is one thing I wish everyone understood about HS, it is that it is so much more than a skin condition. HS is a chronic inflammatory disease that can affect you physically, mentally, and emotionally. Most importantly, every person's HS journey is different, and every journey matters.

There isn't one way to live with HS. There isn't one experience that represents everyone. Some people may receive answers quickly, while others may spend years searching for one. Some people may have different symptoms or challenges than others. But every person's story deserves to be heard. I want people living with HS to know that their pain is real. Their feelings are valid. Their story matters. And most importantly, you are not alone.

I also want people who don't live with HS to understand that what you see on the outside is only part of the story. There is so much that happens beneath the surface that people may never see.

Today, I am a stronger woman. I have found resilience. I have confidence. Most importantly, I have found my voice. I spent years feeling unseen, but now I use my voice to help make sure other people don't have to feel that way. HS has changed my life, but it has also taught me strength, resilience, compassion, and the importance of using my voice. It has connected me with a community I now consider family and given me a purpose I never expected to find.

I know HS will continue to be a part of my journey, but it does not get to define my ending. I spent years feeling covered(hidden), misunderstood, and alone. Now, I choose to uncover the truth about HS, share my story, and help others feel seen. 

Dawmart Castillo aka Dee

One of the things that stayed with me most about this story was the image of a young mother wanting nothing more than to hold her baby comfortably, while silently battling a disease she didn't yet fully understand. I personally couldn't imagine being a young mom and not being able to hold my baby comfortably, that would eat away at me. I will never say this enough, moms with HS are super heroes.

This story is a reminder that HS doesn't wait for a convenient moment to disrupt our lives. It shows up during milestones, motherhood, careers, relationships, and the everyday moments we sometimes take for granted. But there's another part of her story I hope resonates just as deeply. Finding your voice doesn't always mean speaking for an entire community. Sometimes it begins with finally speaking up for yourself. Asking another question, seeking another opinion, admitting you're struggling, refusing to accept being dismissed and sometimes, those small acts of self-advocacy become the foundation for something much bigger.

Thank you for trusting Uncovered with your story and for reminding us how powerful community can be. You went from searching for someone who understood your pain to becoming someone who helps others feel understood. That's something worth celebrating.

To the warrior reading this who is still searching for answers, quietly struggling through motherhood, pushing through a workday, or simply trying to find the courage to speak up: your experience matters, even when no one else can see what you're carrying. You deserve to be heard long before you reach your breaking point.

And you don't have to become an advocate, an educator, or a public voice for your story to have value. Sometimes simply making it through another day is enough. If you’re ready to share your HS Journey, we’d be honored to tell your story through Uncovered.

Want to keep up with Dawmart?

IG: Chronicallydmx

 

 

Happy Healing from the EmpoweredHSWarrior