What It's Like to Lose Five Friends in a Year to Your Illness


Life is short. While this is known in a theoretical way, nothing drives the message home like having five people with your rare disease die within a year, and four all in one month.

There are only 1,200 people worldwide with my disorder, and even less who are close to my age. The older ones all know each other thanks to the internet. Over time we have become good friends. There is nothing like being friends with the few people on the planet who have your rare disease. When no one understands what you go through on a day to day basis, it’s nice to finally find someone who does. It’s comforting to see people live their lives with the disease you have, knowing that having a rare condition isn’t the end.

Then your friends die.

You know the disease will most likely take your life in the end, but it’s theoretical — an idea, not fact. Then it becomes real. Your whole perspective on life shifts. You go from invisible to mortal. You feel you’re going to be dead sooner rather than later. You wonder if you’ll see your next birthday or Christmas. You feel like the floor has fallen out from under you and you believe your life is more fragile than others.

Then it happens again.

And again.

And again.

When you woke up on an average day in August your day was fine and normal, and by the end of a day in September, your life has changed so completely that you almost don’t recognize yourself.

Every night before you go to bed, your friend texts you to say that he has connected himself to his ventilator. Then you do the same, and before you close your eyes, you wonder if you will all be here in the morning. When morning eventually does come around, you’re afraid to turn on your phone in case someone died overnight.

By the time it happens again on a random October day a year later, you hardly react at all. You’ve become numb to death. You feel like you can’t handle another crushing blow because your emotions were used for the last four. Your biggest fear is that you’ll be next, a fear that at the age of 21 is too young to have, a fear that caused you to spend a Friday night writing a will.

But here I am, wondering which of us will go next and wondering if the next one will be me.

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