Uncovered: The Crystal Summerz Story

Welcome back to Uncovered, as mentioned before no two stories are ever alike. Some stories remind us that healing isn't always about getting our old life back. Sometimes it's about discovering a purpose we never could have imagined. This week's Uncovered story comes from Crystal Summerz, an advocate and a friend. She has lived with Hidradenitis Suppurativa for more than two decades. From developing her first symptoms at just 12 years old to navigating stigma, misdiagnosis, chronic pain, and the heartbreaking decision to walk away from a lifelong dream of becoming a police officer, Crystal's journey is one of remarkable resilience. What resonated with me most was the way she transformed loss into leadership. Rather than allowing HS to have the final word, she chose to use her experiences to educate others, advocate for earlier diagnosis, and ensure no one feels as alone as she once did.

Today, we are honored to share Crystal's story.

My name is Crystal Summerz, and I have been living with hidradenitis suppurativa (HS) for more than two decades. My symptoms first appeared when I was just 12 years old. While other kids my age were focused on school, sports, and friendships, I was trying to understand why I kept developing painful boils in places no one ever talked about. I didn’t have the language to explain what was happening to my body. I only knew something wasn’t right. My diagnosis journey lasted about a year, but that year felt incredibly long. Before I had answers, I had assumptions made about me. I was told my symptoms were because of my weight. I was told I wasn’t clean enough. Neither explanation made sense to me, but when those messages come from a medical professional, it’s hard not to question whether you’ll ever be taken seriously.

As my symptoms continued, I was given another explanation that there was something wrong with my blood and it needed to be “cleaned.” That appointment is when I was diagnosed with HS.

Receiving the diagnosis was bittersweet. It was devastating to learn I had a chronic inflammatory disease with no cure, but it was also a relief. For the first time, I knew my condition wasn’t caused by poor hygiene or something I had done wrong. I had a name for what I was experiencing, and with that came the opportunity to begin understanding how to live with it. Over the years, HS has affected nearly every area of my life. It has influenced what I wear, where I go, whether I can sit comfortably through an event, how I exercise, and whether I make plans at all. There have been birthdays, vacations, and important milestones I’ve missed because my body simply wouldn’t cooperate. Chronic pain and fatigue became constant companions, and there were seasons when I questioned my confidence, my independence, and even my future.

One of the greatest losses HS brought was changing the course of my career. I worked incredibly hard to graduate from the police academy and earn my state certification. Becoming a police officer wasn’t just a job it was a dream. But as my disease progressed, the physical demands became increasingly difficult to manage, and I had to walk away from a career I had fought so hard to achieve. At the time, it felt like HS had stolen my future. Looking back, I can see it was redirecting it.

What began as one person’s search for answers slowly became a passion for advocacy. I realized that if I had experienced misconceptions, stigma, and a lack of awareness, countless others were experiencing the same thing. I wanted to help change that.

Today, I use my voice to educate others about HS, speak at conferences, partner with nonprofit organizations, participate in patient advisory boards and think tanks, and create educational content that reaches people around the world. Whether I’m speaking to healthcare professionals, supporting someone who has just been diagnosed, or sharing the realities of living with HS online, my goal is always the same: to make sure no one feels as alone as I once did. Along the way, I’ve learned that managing HS isn’t just about treating the skin. It’s about caring for the whole person. Learning my body’s triggers, managing my diabetes and insulin resistance, finding knowledgeable healthcare providers, prioritizing movement when my body allows, and surrounding myself with a supportive community have all played an important role in my journey. Healing has never been linear, but I’ve learned that progress is possible even when perfection isn’t.

If there’s one thing I wish people understood about HS, it’s that this disease is so much more than “bad skin.” It is a chronic inflammatory disease that affects physical health, mental health, relationships, careers, finances, and quality of life. The scars people see are only a small part of the story. There are invisible scars, too, the anxiety of wondering when the next flare will come, the plans canceled at the last minute, the exhaustion of living with chronic pain, and the emotional weight of constantly explaining an illness most people have never heard of.

I also wish people understood how important compassion is. Comments like, “Have you tried washing better?” or “It’s just a boil,” dismiss the very real challenges people with HS face every day. We don’t need judgment, we need awareness, earlier diagnoses, more research, better treatments, and healthcare providers who recognize the disease before patients spend years questioning themselves.

If you’re reading this while living with HS, I want you to know this: your diagnosis does not define your future. Your scars do not determine your worth, your beauty, or your ability to live a meaningful life. There will be difficult days, and there will be grief, but there can also be joy, purpose, and community.

HS changed the direction of my life in ways I never expected. It closed one door, but it opened another that has allowed me to connect with thousands of people around the world, advocate for meaningful change, and help others find hope in the middle of their own journeys. I would never have chosen this disease, but I have chosen what to do with it. And if sharing my story helps even one person feel seen, understood, or empowered to keep going, then every scar has become part of something greater than myself.

Your Turn

Crystal’s story is a reminder that grief and purpose can exist in the same life. Living with HS often means mourning the plans we thought we’d have while learning to embrace the ones we never expected. Careers may change; dreams may shift but that doesn't mean our lives become less meaningful.

Thank you, Crystal for trusting Uncovered with your story and for continuing to advocate so passionately for the HS community. Your desire and willingness to educate, encourage and speak openly is helping create the future our younger selves needed. And to everyone reading this whatever chapter you’re in right now, whether you’re newly diagnosed, searching for answers, grieving what HS has taken or discovering a new purpose, I want you to know this

Your story is still being written. And it does get better later.

If you'd like to share your own journey with Hidradenitis Suppurativa, we'd be honored to feature your voice in the Uncovered series. Because every story shared makes someone else feel a little less alone.

Keep up with Crystal on social media.

IG Summerzcrystal/ TikTok crystalsummerz

Sending love, light and lots of healing your way. The EmpoweredHSWarrior