Rethinking what it means to be a man with sickle cell disease

If you’ve read my columns, you know how much I praise and appreciate my support system. Everyone close to me knows I have sickle cell disease, so I rarely have to explain it or worry that they’ll panic about my health. They see me regularly, and I’ve learned to communicate openly about how I’m feeling and managing.

Some people in my support system have seen me at my worst. They’ve had to carry me to the car during a crisis and witnessed how quickly I can go from being independent and capable to being completely debilitated by pain. Having people around me who understand sickle cell so well has changed how I think about independence, capability, and, more specifically, what it means to be a man.

Recently, I went to one of my friends’ event spaces to help set up. There were boxes to carry, things to unpack, and plenty to organize. As the other men started carrying boxes, I joined in. I was doing fine and relished the opportunity to contribute in that way. Then, one of my friends said, “Actually, Dunstan, could you help empty the glasses and dishes, make sure everything is clean, and stack them for the event?”

My immediate thought was: “Did they ask me to do that because they thought carrying the boxes would be too much for me?” I wondered whether they were deliberately steering me away from the heavier work because they knew I have sickle cell, or if they simply thought I was a better fit for that particular task. I’ll never know. But my first reaction was interesting because underneath it was a question about my strength and masculinity.

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I knew I could carry the boxes. I knew doing so wouldn’t automatically trigger a crisis. But it was also a long weekend, with an entire event still ahead of us. Perhaps conserving my energy was the smarter choice. That’s where the internal battle becomes complicated. Of course, I want the people around me to understand sickle cell and do what they can to help minimize the possibility of a crisis. But there’s still that male ego. There’s still the desire to participate in the stereotypically “manly” tasks — to lift the heavy things, carry the boxes, and prove that I can keep up.

Yet there’s no prize for carrying the boxes. The boxes needed to be moved, but the glasses and dishes also needed to be unpacked, cleaned, and organized. Both jobs mattered. Still, I found myself wondering how I looked to other people. Were they wondering why I wasn’t doing the physical work? Did they think I couldn’t handle it? Then I looked around at my friends. Nobody questioned it. Nobody batted an eyelid. They trusted that I would contribute in the way that made sense for me.

That took me back to something I struggled with throughout my childhood and teenage years: wanting to be like everyone else. I wanted to play in the snow like everyone else, even when doing so could lead to a crisis. I wanted to push myself physically and deal with the consequences later. I wanted to drink alcohol and keep up with the boys. I wanted to prove that sickle cell didn’t make me different. Some of that desire is still there.

A part of me still wants to say, “Let me be like everyone else.” But I’m beginning to understand that being different doesn’t mean being less. Sickle cell has shaped what I can do and how I approach certain situations. That doesn’t make me less of a man. It simply means I have to approach some things differently.

Perhaps that’s something I’m still learning. By taking on the lighter organizational tasks, I was able to conserve my energy. I still contributed. I still worked hard. And, importantly, I was able to enjoy the entire weekend without having a crisis or ending up in the hospital. And boy, did I unpack those glasses and dishes to the best of my ability.

Nobody thanked me specifically for carrying boxes or unpacking dishes. They thanked everyone for helping set up. Because, ultimately, that’s what mattered. We were all working toward the same goal. I’m incredibly grateful to have a support system that is thoughtful enough to understand when I might need protecting, but respectful enough not to make me feel incapable.

Perhaps part of me will always want to be like everybody else. But I can be strong and still know when to step back. I can be independent and still accept help. I can contribute without having to prove myself. And I can be a man without carrying every box in the room. Choosing to take care of myself isn’t weakness; it’s strength. And this time, I have no regrets whatsoever.

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.