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Why My Illness Makes Me Feel Most Isolated When I'm Out With Friends

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Living day in, day out with the physical symptoms of a chronic illness is hard enough as it is. Dislocated joints are hard, pain is harder, but the hardest part is not always what you would expect. It’s the isolation you feel.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

I don’t necessarily mean the type of isolation where you are stuck in a dark room alone. While this does happen to me quite regularly, it’s not these days when I feel the most alone.

In fact, these days can sometimes be the days where I feel the opposite. That’s because when I am too weak to get out of bed, people start to worry and begin to understand you are sick. On these days, I get texts to ask if I’m OK and people offer to help me in any way they can. These are the times where people show compassion and empathy, and as a result, I feel so loved and supported.

But for most of the time, I appear healthy. I manage to get through the day relatively normally and I can usually find enough strength to go to classes or go out with friends. Even though these are the days where I know I am not physically secluded, they are there ones where I can feel the most alone.

This may sound rather contradictory, but let me explain. When I am out with friends, I am exposed to their way of life, the way of life I would much rather be living. I don’t mean that they are traveling and doing extraordinary things, but rather I mean the simple tasks that I wish I could do. These include being able to concentrate for more than a few minutes before brain fog kicks in, or watching them wear clothes appropriate for the weather as I wear the same outfit for the umpteenth time as it’s one of the only ones I can wear without too much pain. Sitting in a class and observing everyone around you taking notes easily and quickly makes me boil over with envy as I cradle my shoulder which has just subluxed from writing for a few minutes. It’s sitting at lunch watching people stress over what they will eat when they can’t decide because they “could eat everything” as I have to settle for yet another plate of mush to avoid a jaw dislocation. It’s being incredibly jealous of the people who are able to climb the stairs, as I have to take the lift to ensure my knees don’t pop and the whole world sees me fall.

However, even though I feel these things, I could never openly tell my healthy friends this as I fear they will just think of me as being a bitter person. And so, I keep pushing through the day the best I can, which means I will outwardly look like any other person. And on these days, I don’t always get the support and assistance I need. No matter what I look like, I will always be fighting a battle with pain on the inside. But on my “good” days, everyone forgets that and I am expected to be able to keep up, something I cannot always manage. And this is what makes me feel isolated.

I will never expect anyone of my friends or family to fully understand what I go through every day, as it’s incredibly difficult to explain Ehlers-Danlos syndrome and chronic pain to those who have never felt it, but it’s incredibly heartbreaking when you tell people what’s going on yet you get overlooked and are expected to manage in the same ways your peers do. Although I want to be, I am not everyone else. And this longing to be “normal” and, even more so, to be understood is what really makes me feel alone.

Thinkstock photo via TeerawatWinyarat.

Originally published: May 4, 2017
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