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The Unique Type of Loneliness That Comes With Chronic Illness

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It seems like getting familiar with loneliness is inherent in living the chronic illness life. This loneliness doesn’t come from being literally and physically alone, though I’m learning there is a decent amount of “alone time” one has to learn to appreciate when being chronically ill. There will always be those nights in the hospital by yourself and the long days flaring at home alone, and the likelihood of attending the perpetual frequent doctor appointments alone is inevitable. But I mean the loneliness of always feeling alone no matter what you do and whom you’re with.

There’s no one who will ever quite understand what it’s like to live every day not knowing if you’ll be in pain, able to keep a meal down, remember to take all of your medicines on time or maintain a sense of positivity and hope when circumstances seem unchanged. I realize everyone’s life is unique and there will always be experiences unique to every individual, but the thing about living with a chronic illness is it’s the unintentional isolation that binds us all together in a way. Somehow, though unexplainable, we all feel a sense of connection in our loneliness. I guess it’s a bit of an overstatement to say all, but I’ll say “many” in my experience express this sentiment in one way or another.

Somehow we all understand there’s a path in which we go that no one else is able to follow. Doctors can’t explain many of our symptoms and conventional medicine has offered little to no reprieve. It’s a weird feeling to convey in words. There’s this competing feeling of “no one will ever get it” and “lord please I just need someone to get it.” Though words leave you when time comes to explain what it is exactly that you mean.

I’ve grown frustrated and tired of the capricious nature of accepting circumstances you cannot escape but cannot change. A portion of me has grown comfortable in being misunderstood, giving me excuse to retreat from the world and exist in a self-created bubble of tolerable happiness. While the rest of me yearns for the ability to cure my loneliness.

When I was first diagnosed I read a ton of articles on “how to cope with a chronic illness diagnosis” and they all seemed to say surround yourself with positive people and those who “love on you best,” but honestly, in our society? Everyone’s hustling from one job to the next, inefficiently educated in their degree or experience for “good jobs,” trying to stay above the political chaos and looking for connection in a disconnected world.

Not only are our experiences difficult to quantify, we live in a hustling and bustling world in which being lucky enough to even have someone who tries to understand is worth its weight in gold anyhow. I’m lonely but I’m learning to accept the lingering sense of “no one will ever get it” and allow those who take the time to try an opportunity too.

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Thinkstock photo via NeonShot.

Originally published: November 8, 2017
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