2 years on: Raising awareness by documenting life with sickle cell

Hello, June! This month is very significant in my life, with various celebrations and anniversaries. For one, I’ve spent two years writing almost weekly about my sickle cell disease journey on Sickle Cell Disease News! I was in awe that I lasted a couple of months and was astounded to have lasted a year. Now at two years, I have trouble finding the words to express how this anniversary feels.

I’m happy because I proved to myself I could be consistent despite a condition that always tries to break your streak. I’m sad because I wonder where two years of my life have gone. I kid, but ultimately, I’m proud of my achievements.

I like to avoid the limelight; giving myself plaudits seems strange. However, when I think about who I was two years ago, it’s difficult not to see the growth and development in my writing and as a person.

Writing about my experiences over the past two years has provided a space for immense personal growth. Before my column writing, I was timidly on the path to becoming an advocate. I’d only share my talks or interviews with close friends. I did advocacy on the side, considering it insignificant unless someone wanted to delve deeper into what I did.

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In this writing space, I’ve found my voice. In sharing different topics or expanding my thoughts, I’ve had to search myself to assemble my sickle sagas. Writing has challenged me to delve deeper into my emotions, experiences, and challenges, in time providing me with a better understanding of who I am and how my condition affects me.

In this writing space, time holds still as I pause to describe what I feel or felt in the past. In a world constantly evolving and moving forward, this opportunity to exist outside of the rush in my head gives me a sense of grounding and a chance to heal. In this grounding, I can accept what’s happened and move forward.

For years, I was moving forward physically without fully recovering mentally, which devastated my mental health. As I write about some of my more traumatic experiences, I’m pushing myself to accept, forgive, and move on from the challenges I face with sickle cell. My thoughts, and even sickle cell itself, can become isolating and make me lonely.

However, finding support and connections over the past two years has been excellent for me. With my openness, I’ve encouraged others to do the same or to reach out. From the community of patients who can understand or the audience that wants to understand, I’m grateful. Everyone has given me so much encouragement, and I’ll always be thankful for that.

When I started my sickle cell sagas, I sought to share experiences, encourage, inspire, and educate everyone so that one day, the lack of awareness and information can be seen as a problem of the past. At two years, that’s not yet a thing of the past, but I can see a movement in the right direction.

Thank you to everyone who has supported me over the past few years. Wow. My name is Dunstan Nicol-Wilson. I work as a clinical project manager, freelance writer, and advocate for sickle cell.

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.