Reflecting on 5 years of finding my voice through writing

Five years ago, I wasn’t sure I could do this.

I remember staring at a blank screen and wondering whether I had anything worth saying. I knew what it felt like to live with sickle cell disease — the pain, the hospital admissions, the exhaustion, the grief. But writing about it publicly? That was different.

At the time, I didn’t have many outlets for what I was carrying. I wasn’t in therapy, and I didn’t always know how to process what I was going through. Many of my experiences with sickle cell felt unspeakable. So when I joined Bionews, the parent company of this website, and began writing my column, “Sickle Sagas,” it became the first place where I could turn those experiences into words.

Looking back now, I can see that my earliest columns were written from a place of hurt. I was trying to make sense of years of frustration, fear, and disappointment. I was writing about topics I rarely discussed aloud, partly because I thought I was supposed to be strong, and partly because I didn’t know whether anyone would understand. What surprised me was how many people did understand.

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Over time, the column stopped feeling like a solitary exercise and started feeling like a conversation. Patients, caregivers, advocates, and readers I never would have met otherwise became part of this journey. Their messages reminded me that the experiences I thought were uniquely mine were often shared by others living with sickle cell disease.

As the years passed, my writing changed because I changed.

In the beginning, many of my columns focused on pain and survival. Today, I find myself writing about travel, relationships, mental health, boundaries, and what it means to build a life alongside a chronic condition rather than constantly fighting against it. The disease is still there, but it is no longer the only thing in the story.

That shift has mirrored my advocacy journey as well.

My growth as an advocate

When I first entered this space, I wanted to say yes to everything: every campaign, interview, event, and blood donation drive. I felt a responsibility to show up wherever I was needed. There is value in that kind of energy, but there is also a cost.

One of the biggest lessons I’ve learned over the past five years is that advocacy has to be sustainable. I’ve become more selective about where I invest my time and energy. Not because I care less, but because I’ve learned that looking after myself is part of the work.

What gives me hope is that I’ve never felt alone in this effort. Across the sickle cell community, I’ve watched people push for better care, raise awareness, support one another, and refuse to accept that things cannot improve. I’ve seen conversations around blood donation grow louder, new patient groups emerge, and more people speaking openly about their experiences.

Progress has not always moved as quickly as we want. There have been setbacks, disappointments, and moments when it was difficult to hold on to hope. But the one thing that has remained constant is this community’s resilience.

That resilience has shaped the way I write. Even in my hardest columns, I usually find myself searching for some thread of hope at the end. That isn’t a writing technique; it’s simply who I am. If I’m going to tell the truth about the pain, I also want to tell the truth about the possibility of something better.

As I reflect on these five years, I’m grateful for the readers who have stayed with me through every stage of this journey. You’ve watched my writing evolve from a place of raw frustration into something broader and, I hope, more compassionate. In many ways, you’ve watched me grow up.

And that may be the thing I’m most thankful for. “Sickle Sagas” hasn’t just documented my life with sickle cell disease; it has documented my growth as a person. It has captured the shift from merely surviving to trying, imperfectly, to build a meaningful life.

Five years later, I still don’t have all the answers. I still have difficult days. I still have moments of fear and uncertainty. But I also have something I didn’t have when I started: confidence that our stories matter.

Thank you for reading them, sharing them, and reminding me that none of us walks this path alone.

Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, Bionews, and are intended to spark discussion about issues about sickle cell disease.