Reflecting on 4 years of sharing my experiences with sickle cell

As I mark four years of writing for Sickle Cell Disease News, I find myself reflecting on the journey with a deep sense of gratitude and humility. It’s incredible to think back to when I started. I was unsure of what I’d write about week after week, and yet here I am, four years on, still sharing my life, thoughts, and experiences with you all.

First and foremost, I would like to extend my heartfelt thanks to the team at Bionews, the publisher of this site. Thank you for encouraging me, believing in my voice, and giving me the space to be open and honest about what it means to live with sickle cell. Vulnerability is never easy, especially when you’re writing for a public audience, but the support, patience, and guidance you’ve offered me through edits and feedback have been instrumental. I’m especially grateful for how you’ve helped shape my ideas into powerful stories without ever compromising the authenticity of my voice.

Second, to you, my readers: Thank you. Whether you’ve read just one column, left a comment, or reached out to me directly, your engagement has meant more than you know. Even when I can’t respond to every message, I see them. Your words have encouraged me to keep going, especially on the days I struggled to find motivation and wondered if my words were reaching anyone at all.

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Sometimes, writing these pieces has felt like I’m speaking into the void, but in a way, that’s what has given me the courage to be vulnerable. It removed the pressure and allowed me to speak from a place that’s deeply personal and honest. But the truth is, I’m being heard. Knowing that my story resonates with others, perhaps offering encouragement or a sense of connection, makes every word worthwhile.

I also want to take a moment to give myself some credit. Being open about my journey with sickle cell disease hasn’t always been easy. If you’ve been with me from the beginning, you’ve witnessed my transformation in how I perceive and navigate this condition. You’ve read about the mental health struggles, the challenges of identity, what it means to be a man with sickle cell, and even my reflections on the future, like starting a family or adjusting my life to the unpredictable nature of this disease.

You’ve been with me through the moments I’ve missed celebrations, traveled during flare-ups, and pushed through exhaustion to attend events. These columns have documented both the monumental and the mundane, the full spectrum of life with sickle cell. I’ve never wanted to sugarcoat my reality, because the truth is that living with sickle cell isn’t easy. However, I hope that by sharing everyday moments — the missed birthday party, the hospital stay, the fleeting joy of a good day — I’ve helped raise awareness about just how varied and complex this condition can be.

I dream that, one day, I won’t have to explain sickle cell at all, and that it will be so widely known and understood that awareness is a given, not an ongoing battle. It’s a big dream, but one worth working toward.

To the researchers, healthcare professionals, and policymakers who have reached out over the years, thank you. Your interest in understanding the lived experience of people with sickle cell gives me hope. The gaps in research, funding, and equitable care are still vast, often marked by systemic inequalities and racism. But your willingness to listen, learn, and engage means progress is possible. Please continue to use stories like mine as reference points to fuel change in your communities and institutions.

To everyone who’s walked this path with me over the past four years, thank you. Whether you’re a fellow warrior, an advocate, a healthcare worker, a researcher, or a curious reader, thank you for sticking with me and for reading.

Here’s to more experiences to share, more awareness, and more change.

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 pertaining to sickle cell disease.