My Body Was Never the Enemy

I was 18 years old when I first realized something wasn’t right. I developed painful lesions in one of the most vulnerable areas of my body and sought medical help, hoping for answers. Instead, I was told I had herpes simplex virus. I remember the fear immediately washing over me. The shame. The confusion. The questions I was too embarrassed to ask out loud. Thankfully, within a week, a physician on my college campus recognized that something wasn’t adding up and gave me the correct diagnosis: Hidradenitis Suppurativa (HS). I wish I could say that receiving the correct diagnosis made everything easier.

It didn’t.

At the time, there were few resources, little awareness, and almost no one talking openly about HS. I certainly didn’t know anyone who looked like me living with it. As a young Black woman trying to navigate adulthood, I found myself carrying a disease that felt invisible to everyone except me.

Throughout most of my twenties, I relied primarily on holistic approaches to manage my HS. I explored nutrition, supplements, stress management, and natural healing practices. These tools became an important part of my life and gave me a sense of agency during a time when my body often felt unpredictable. But while I was trying to manage HS, life continued to unfold in ways I never expected.

In my late twenties, I experienced the devastating loss of two pregnancies through miscarriage. There are some losses that change you forever, and those losses were among them. The grief was profound. My body felt less and less like a place I could trust. It seemed as though every time I believed I was moving toward healing, another challenge appeared.

During that same season of life, I was also diagnosed with Anxiety, PTSD, and Bipolar Disorder Type II. To many people, especially within the Black community where conversations about mental health are often shaped by stigma and fear, those diagnoses can sound frightening. But my experience taught me something different. With the right support, treatment, self-awareness, and commitment to my wellness, I became well managed and began to thrive.

As a Black woman, I could not separate my physical health from my mental health, nor could I ignore the reality that we live in a society that is deeply anti-Black. The stress of navigating chronic illness, grief, trauma, and systemic inequities all intersected in my life. That is one reason I speak so often about Blackness. Our experiences matter. Our stories matter. And I have always wanted people to see that Black women can live full, joyful, successful lives while managing diagnoses that others may misunderstand.

As I entered my thirties, I continued searching for relief. Believing hormones might be contributing to my HS severity, I eventually underwent a partial hysterectomy for fibroids, hoping it would also alleviate my HS symptoms and flares since my HS had always been triggered by hormones and stress rather than food, soap, or fabric. I hoped it would finally quiet the disease. I hoped it would give me the peace I had been chasing for years.

It didn’t.

The flares continued.

The pain continued.

The disease continued.

And with every setback, I found myself asking the same question:

Why won’t my body cooperate?

Looking back now, I realize I spent many years believing my body was betraying me.

Then, on my thirty-fifth birthday, everything changed. I met Dr. Jamie Weisman.

To this day, I consider that meeting one of the most important moments in my health journey. For the first time, I felt truly seen. Not judged. Not dismissed. Not rushed through an appointment. Seen. Under her care, I began treatment with biologic medication. It was not an overnight miracle, but it gave me something I had been searching for nearly two decades: hope. More importantly, it helped me understand that healing was not about choosing between conventional medicine and holistic healing.

I didn’t have to choose.

Biologic medication gave me stability. It reduced the relentless inflammation that had dominated my life for years. At the same time, I continued embracing the practices that nourished my mind, body, and spirit. The truth is that my healing has never come from one thing. It has come from a combination of biologic medication, surgical intervention, when necessary, holistic wellness practices, spiritual growth, and the unwavering support of community.

Each piece mattered. Each piece helped carry me forward. Healing, however, was not only physical. For years, HS profoundly affected how I saw myself. 

The lesions. The drainage. The pain. The scarring. The surgeries. I became hyperaware of my body and convinced that everyone else noticed the things I wanted to hide. Even after undergoing extensive wide excision surgeries under my arms and in my groin, I still carried years of shame and insecurity.

The scars were no longer just on my body. They were in my mind.

Then, in 2022, I made a decision that would change my life in a way I never expected.

I booked a boudoir photoshoot. I thought I was signing up for beautiful photographs. What I actually received was a new relationship with myself. For the first time in years, I looked at my body through a lens that wasn’t focused on disease.

I wasn’t examining scars.

I wasn’t looking for flaws.

I wasn’t calculating what needed to be hidden.

I saw a woman.

A beautiful, sensual and resilient woman. A woman who had survived.

That photoshoot gave me something HS never could take away: permission to see myself differently.

Since then, I have become relentless about refusing to hide.

I wear sleeveless tops. I show my underarms. I wear swimsuits. I take photographs. I take up space. I allow myself to be visible. Not because my scars disappeared, but because I finally stopped believing they diminished my beauty.

If there is one gift, I wish every woman living with HS would give herself, it is the opportunity to see herself through compassionate eyes. Whether that comes through a boudoir session, professional photographs, art, movement, or simply standing in front of a mirror and choosing kindness, I hope every woman living with HS experiences a moment where she remembers that she is worthy of being seen.

Confidence is not the absence of scars. It is deciding that your scars no longer get the final say.

Today, yoga helps me reconnect with a body I spent years feeling disconnected from. Sound baths calm a nervous system that has carried decades of pain and trauma. Meditation and my study of Buddhism help me approach suffering with compassion instead of resistance. My spiritual practice reminds me that healing and curing are not always the same thing.

For a long time, I thought healing meant getting rid of HS.

Now I understand that healing is something much deeper. Healing is learning to trust yourself again. Healing is learning to love yourself again. Healing is learning to see your body as an ally instead of an enemy.

Today, I am not only an HS patient. I am an advocate. I am a speaker. I am the founder of Empowered HS Goddess Foundation, an organization dedicated to supporting people living with HS, particularly Black women and women of color who are too often overlooked in healthcare conversations.

Every time I share my story, I think about the eighteen-year-old version of myself sitting in fear and uncertainty. I think about the woman grieving miscarriages, the woman recovering from surgery, the woman who believed she would never feel comfortable in her own skin again. And I wish I could tell her this:

Your body is not the enemy. Your body is carrying more than anyone can see. It carries pain, grief, loss, scars. But it also carries wisdom, resilience, beauty and despite everything, it carries you.

If there is one thing I wish people understood about Hidradenitis Suppurativa, it is that we are so much more than our disease.

Behind every flare is a person building a life, nurturing dreams, loving deeply, finding joy. A person choosing courage over and over again.

My story is not a story about disease. It is a story about resilience. And after nearly three decades living with HS, I am still here. Still healing. Still growing. Still becoming.

Leia Ali
Founder & Executive Director
Empowered HS Goddess Foundation 🌿💜🌺

Reading stories like this reminds me that healing rarely happens in one straight line. Sometimes it looks like surgery, biologics, yoga, lifestyle changes or finally allowing yourself to be seen without shame. And sometimes healing begins the moment we stop treating our bodies like enemies. Thank you for taking the time to read Leia’s story. Remember behind every warrior there is a whole a$$ human fighting to exist in a world that often misunderstands chronic illness. To our featured warrior, thank you for your vulnerability, honesty and courage. And to every warrior reading this: You are not broken nor invisible. Your story deserves space too. If you feel called to share your own journey living with Hidradenitis Suppurativa you can learn more about the uncovered series and submit here.