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Sickle Cell in the Time of COVID-19

COVID has forced the world to slow down, take a pause, and really evaluate the state of our society, of humanity. The lockdowns have made us all do things that we really should have been doing before it got to this.

The whole world has slowed down

We’re spending more time at home, with our families, and educating ourselves and all of the problems we as a society have to overcome. But the thing about having sickle cell disease is that your body forces you to slow down and take a break, whether you want to or not. In a lot of ways having sickle cell anemia has prepared me for the isolation that so many were facing for the first time in 2020.

The only difference is the whole world has slowed down. When I have a sickle cell crisis or pain episode, though my body needs to take a break, the world – before COVID – would keep moving at the same pace.

The world never before waited for me to rest up and get better, but my body forced me to slow down anyway. Since my diagnosis, I have had a very different outlook on life than most people. The things people do now, the way in which they fear for their lives, not knowing if they’ll get COVID and if they do how sick they’ll get, are the things I’ve been worried about most of my life.

Gratitude

Everyday, I am grateful to have woken up again and to not be in pain. I am acutely aware of how short and not guaranteed life is. But COVID has been a rude awakening for the rest of the world. People all over the globe are learning for the first time what it feels like to be the patient. To be critically ill and unsure what tomorrow holds.

Hoping for a better world

I would like to believe our joint experience of this global crisis has made us all more empathetic, more grateful, and kind; but when I see people not wearing masks or taking COVID precautions seriously, I’m reminded that for some nothing has changed.

Worry

When the world first started to slow and shut down, I found myself panicking. I was scared of what getting COVID would mean with being immuno-compromised and having sickle cell. I took heavy isolation precautions for the first few months, which I was able to do because school went completely virtual.

It was my first time feeling a different kind of isolation. Though I was used to feeling alone when I’m sick, this was the first time my body wasn’t the reason for my dismay. I was used to feeling as if no one in the world could relate to or understand my pain. But now, it was as if I was sharing this particular feeling of isolation with millions across the globe. In a way, it was comforting to know for once I was not alone.

Time moves on

But time, of course, moved on and slowly the world sped back up again. Now I wish things would slow down again, not because I’m afraid of my own health but because I’m horrified by the death toll COVID has claimed. Because I wish we as a society would continue to take pause and reflect on all that we have exposed and learned this year in isolation.

Reflecting on a year of isolation

When we were forced to take stock of the world around us, separated from all the things that stop us from appreciating our limited time in this world. I hope that when COVID becomes a discussion of the past, the lessons we’ve learned and community we’ve created will remain. I hope people will better be able to empathize with those like me, who never know when their body will strike and force them back into their own kind of isolation.

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