Site icon Gary A. Swaby

The Everyday Struggle of a Man with Sickle Cell

A lonely sickle cell sufferer

I wrote about the complications that I’ve experienced in relationships before, but now I really want to breakdown the psychology of being a man with Sickle Cell Anaemia, or any similar chronic illness.

First, a few disclaimers: What I’m about to say may not apply to all men with Sickle Cell. I can only speak for myself and other cases that I’ve heard about. Secondly, It’s important to understand that women also have similar difficulties as men and some that differ. Women with Sickle Cell also have the pressure of complicated pregnancies. In the future, I will aim to have a guest post from one of the women I know with Sickle Cell so we get both perspectives.

The Psychology of a man with Sickle Cell

Although I like to think in unconventional terms, the fact of the matter is that we live in a world with perceived societal norms. The notion of equality aims to dispel gender roles, but the fact is that men have been conditioned for generations to be strong…to be leaders…to never show weakness. Society champions the idea of the alpha male. Everybody loves the idea of a Superman.

But when you’ve grown up with a lifelong illness, donning the Superman cape isn’t so easy. We’re constantly defeated by our one true kryptonite. It derails our lives without warning, dismantling any hopes of living a stable lifestyle. When you’re so weak and vulnerable, and when your powers can be taken away in a moments notice, how can Superman successfully protect his Louis Lane every day?

What I’m trying to say here is that as a man, I’ve tried hard to be society’s version of a perfect man. I want to be strong, I want to be a protector for the people I come to love, and I want to be that emotional support that everyone can count on at any time. But as I get deeper into my thirties, I feel as fragile as I’ve ever been. I feel hopeless. I’m struggling to even look after myself let alone a family. And this pressure to be the societal norm puts a permanent indentation in my line of thinking.

This indentation makes developing relationships with new people complicated. Because even when I meet someone who’s my idea of the perfect person, I’m weighed down by the pressure to be at my optimal level of performance for them. And most days I’m not even near optimal. This quickly brings doubts about the sustainability of the relationship. I’m always thinking in the back of my mind that I’ll be slowing the person down, or that I’ll just end up being a burden.

Soon enough, this results in me sabotaging the relationship before it has the chance to blossom.

Living with an invisible illness is brutal

Sickle Cell, like mental illness, is an invisible illness. What this means is that the average person will look at me and assume I live a functional life. They’ll have preconceived ideas about me as a man. And this is understandable for the most part. You can’t visibly see pain and suffering. And for Sickle Cell sufferers, we’ve learned to cope to the point that we’re not always on the floor rolling around screaming. Sure, that does happen, but when it does happen we’re usually in the hospital so fast that no one has the chance to see it.

But in an everyday scenario, my body could be throbbing in pain non-stop but a person won’t be aware because I’m doing my best to hold it in and look normal. I want to be strong, and I want to be Superman. And when people look at me and see Superman, they’re unaware of how broken I really am.

This brings another psychological battle into play…one that’s extremely hurtful. It’s the fact that I’m scared to let the world know how absolutely broken I am because of the fear that they won’t believe me. It will destroy me to know that even people I care about don’t believe the extent of my struggle.

As a man, we can pretend to be Superman for so long that people dismiss our cries of pain. They don’t believe our cries to be real. And when we’re so broken that we can no longer pretend, we’re left all alone to pick up the pieces because everyone believes that we’re fine. They’re unwilling to believe that Mister Strong-man is so weak and vulnerable.

And all of these things combined makes you feel like you’re a failure of a man. Like you’re incapable of ever living a meaningful life because nothing has ever been long-lasting or sustainable. That you’ll never be able to look after a woman and children because you can’t even get yourself together.

Being a man with Sickle Cell Anaemia is a daily struggle, and therefore I’m forced to live life one day at a time, lacking in the ability to plan too far ahead in the future.

There’s much more I have to say on this topic, but the subject matter would be too personal for such a public outlet. I will be working on an introspective memoir in the future where I’ll publish my most vulnerable thoughts and feelings. For now, let me know if this content was useful for you. It helps me find the motivation to produce more like it. Thanks for reading!

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