We need more men to speak about living with sickle cell disease

Note: This column includes thoughts about suicide. Resources for help are listed at the end of the column.

Recently, I was privileged to speak at the Smile of a King Foundation, which was formed in London to support the mental health of Black men. It honors Tashan King, a Black blood donor who, early last year at age 24, died by suicide. My particular remarks were to raise awareness for blood donations and sickle cell disease.

This event was important to me, and not just because it was an opportunity to raise awareness and encourage more blood donation. It was also a chance to encourage Black men to speak up about their emotional problems so they can avoid premature endings like King’s. I’ve had my challenges with sickle cell, and it wasn’t until I began to speak up that I saw a difference in my mental well-being.

At this event, sadly, the turnout could’ve been better. The event, specifically targeted to encourage men to speak up, drew more women. There were many reasons for the discouragingly low attendance, but I’ve deduced it was because men tend to avoid discussing their health. As in all of the foundation’s in-person events, however, the remarks were recorded and shared online.

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The central encouraging part of my day was seeing a man with sickle cell speak about his experiences to an audience for the first time. In fact, I’m always refreshed when I see other male patients with sickle cell talking about their journeys. I don’t see it often, and it evokes a sense of kinship because, as we’re the same gender, there are similarities in our experiences.

For example, we feel pressure to fit the mold of what society believes a man is supposed to be, even if we don’t because of our chronic condition. In addition, there’s the impact of sickle cell on our roles as a brother, husband, or father. It also affects our approach to dating and relationships. The list goes on.

Seeing this guy take the stage for the first time was inspirational. Here are some of my main takeaways from seeing a fellow man speak about sickle cell.

Strength in vulnerability

He spoke about how much encouragement he needed to stand before everyone and discuss his journey. He said he wouldn’t have done it if he hadn’t made a promise to his wife.

It reminded me that being vulnerable isn’t an easy thing to do. I’ve often come off the stage exhausted by the mental fatigue of explaining my journey.

Pain beyond a crisis

The pain of a sickle cell crisis and hospital admission lingers far beyond the actual episode. Trauma, guilt, and self-worth are all repercussions of a crisis. Each patient will experience this in different ways and at different points in time.

Still, these consequences often go unseen because we’re no longer in physical pain. These unresolved feelings then manifest in many ways, including anger, mistrust, or depression.

There is healing in acceptance

The speaker found healing through his faith, and I could relate to that. Learning to embrace the cards you’ve been dealt and use them to the best of your ability can lead to healing. Learning how to manage my condition and take the best character traits from my experiences has continued to heal many of my emotional scars.

I want to see more men speak about their experiences. I didn’t have many men I could relate to growing up because nobody else had sickle cell. Now, however, I’m seeing more and more men take the step to speak up about their experiences. This change gives me so much encouragement and the belief that a shift is coming in the mental well-being of all patients.

If you are struggling with thoughts of suicide, please contact the Suicide Prevention Lifeline in the U.S. (988, or 988lifeline.org, available 24/7) or Samaritans in the U.K. (samaritans.org).

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.