The other day a friend of mine from Washington called me while he was completely wasted and it was quite hilarious and weirdly touching. My friend, called me to express how worried he was about me and how seriously I should take my health during this pandemic (only one other friend has expressed concern like this, my other friends attempted to get me to go to the beach).

So yeah I was genuinely surprised that someone was checking up on me. And that got me thinking about how rare a connection like that is and how much I despise how rare it is.

Since the start of this pandemic I have had time to kill, I have spent my time trying to connect with more people with SC that I can relate to. After hours of searching I found what I was looking for on Reddit; an invite only Discord group specifically for people with Sickle Cell 18+. This is very new to me, never have I ever been part of a group (besides my sibling group), with anyone else who has the same condition I do, never have I been part of a group chat where advice and answers to my specific questions are given. I’ve never been part of a group where people wake up in the morning and ask how I slept and it’s not a general question but has a more specific underlying question; they mean ‘how long did you sleep tonight with those aches and pains’, ‘how are your oxygen levels this morning’ ‘any joints feel like they’re on fire?’. A question answerable by all in this group. Questions I’m so used to presenting in regular group chats that get completely ignored or glanced over because no one can relate.

With this new group of like-minded Sickle Cell Warriors I can finally talk about how my sleep cycle is greatly affected by my hip pain and someone else who is going through the same thing offers advice that works. I can moan and complain and get replies not silence… never before have I felt okay moaning and complaining about this drug and that drug, this pain and that pain, this hospitalization and that hospitalization and having someone honestly reply “saaame” and totally mean it.

These individuals I’ve met are like me even though we have very different lives and past experiences, from the 18 years old to the 40 year olds, growing up in dozens of different countries. A complicated group of anime, art, design, photography loving, gaming nerds, medical professionals and so much more, people who deal with the invisible problems I struggle with daily. I am not normal or average and it feels amazing having a group of people where I don’t have to pretend to be normal to feel normal.

From day one it was like society was this violent, complicated dance and everybody had taken lessons but me. Knocked to the floor again, climbing to my feet each time, painfully humiliated. Always met with disapproving faces, waiting for me to leave so I’d stop fucking up the party. I always felt like I was on the outside, where the freaks huddle in the cold. Out there with the misfits, the broken, the glazed-eye types who can only watch as the normals enjoy their shiny new cars and careers and marriages and vacations with the kids. The freaks spend their lives shambling around, wondering why and how they got left out. Their encounters with the world are marked by awkward conversations and stifled laughter, hidden smirks and rolled eyes. And worst of all, pity.

You can be a drunk. You can be a survivor of abuse. You can be an ex-con. You can be a homeless person. You can lose all your money or your job or a husband or a wife, or the worst thing imaginable, a child. You can lose your marbles. You can be standing inside your own failure, a small sad stone in your throat, and still you are beautiful, your story is worth hearing, because you–you rare and phenomenal misfit–are the only one in the world who can tell the story the way that only you can.

I feel like I’ve always known this but I’ve never realized it. I’m not sad it took me 27/28 years to realize this, I’m happy because it took me only 28 years to realize this and not a lifetime. Because I have a long way to go and lot of lives to help and connect with, a community to start, a community I was unable to find until I was an adult.