Last updated: January 2023
Some people have no idea what’s it like to feel so utterly alone in this world. I’ve felt that way a lot, since first being diagnosed with sickle cell.
It’s like constantly feeling like an outcast. Struggling to make really deep friendships because you miss things that are out of your control. It’s being made fun of for not being able to keep up with the other kids. It’s a baring and unimaginable amount of pain, alone in the dark in utter silence. It’s screaming into the abyss for help but somehow no one hears you. Because they don’t want to, or they’re somehow incapable of understanding why you’re screaming over what they perceive as nothing.
Sitting with my loneliness
Though it hurts to somehow always return to this familiar feeling of loneliness without bounds, I’m grateful. Because even though I long for understanding and acceptance and true connection, I at least have learned how to sit in my loneliness.
I feel bad for the people who have never been alone. Who chase after people and things to feel the void. Or maybe they were just blessed with abundance and strength in the community from a young age. But people confuse loneliness with being alone. Some people have everything in the world, are surrounded by community and still feel utterly alone.
Enjoying my own company
I’m perfectly fine being alone. I rather enjoy my own company and seek solace in my alone time – a statement that was not true in my adolescence. I would much rather have the few, meaningful connections that I do have over all the surface-level connections in the world. But yes, I still get lonely. It’s the feeling of not having someone in a moment you need something, anything really. Humans aren’t meant to be lone creatures. We need community.
They say it takes a village to raise a child. I think the same goes for sickle cell warriors. We’re so strong because we’ve learned how to survive on our own. How to face a world that doesn’t believe you’re in more pain than fathomable. And somehow still have compassion left to make that world a better place.
I used to feel like having sickle cell was a curse, but in so many ways for me it’s become a blessing. But sometimes it hurts to feel, care this deeply, about people and a world that makes it so blatantly obvious it doesn’t care about you.
Understanding the world around me
There are days I really wish I cared less. I think people can be so selfish in their pursuits and I for some reason choose to give more than to take. I don’t do it in hopes of changing people or receiving anything in return. I do it because I believe in putting good energy out into the world and that it will come back to you. Because I truly treat others how I want to be treated and do my best to understand when they don’t do the same for me.
It’s like how everyone wonders what it’s like to have a pain crisis. They’re curious to the point of wonder but yet struggle so much to imagine what it’s like that they can’t even always believe the pain is real.
But the pain is real, even if no one can see or feel it. And loneliness can be as consuming as the pain, or grief I’d imagine. Still, I’m not going to give up on finding those real connections. After all, I found this wonderful community of people who make me feel so seen, heard, and appreciated.
Are you interested in connecting with other sickle cell warriors?