What I Wish My Able-Bodied Friends Knew as a Person With Chronic Illness
This is a difficult article to write simply because it could be easy to interpret it in the wrong way: “Oh, so you don’t appreciate our help,” “You know, we are trying,” “It’s not all about you – we have lives to live, too.”
I know my friends would not say these things, and they probably don’t think these things, but living with a chronic illness can make you feel like you are disposable. After all, if I abandon you then you can continue living just as you were. You’ll find new friends and you can move on. But, if you abandon me, well. I don’t have the same capacity to meet people, to form new friendships, to continue old ones. I am at your mercy. I can’t join your world, so I am left hoping you’ll continue to visit me in mine.
If there was one thing I wish my able-bodied friends understood it would be: I am, to a degree, dependent on you to come to me.
For example, today is my second day out of the hospital. My friends are going for a meal out and they want me to join. They’ve checked – the
food I can eat is on the menu. Why not come, it would be good for me? But what they don’t understand is it isn’t that easy.
Fresh from the hospital, I may look the same but my body is tired. I can’t walk as far, I can’t manage social interaction for more than 30 minutes. I can eat again, but before I got home I was nil by mouth for more than 60 hours to clear a bowel obstruction. I cannot eat large portions of food until I know I won’t become obstructed again.
So, they’ll go off and have fun. Then they’ll return, more food, more
laughs. And I’ll feel a bit more alienated. I’ve ended up spending
another day alone. You might say it was my choice, but this does not feel like a real choice.
I think summer is harder. It’s hard seeing all my friends go off on holidays, form new relationships, get new jobs, move away and start families when I’m stuck at home trying to entertain myself. “You should come,” they say, running off into the sunlight. It isn’t that easy.
I remember one friend of mine was upset because their holiday was cancelled last minute and they had to spend nine days at home. They moped for the weeks running up to it about how unfair it was, then spent the week seeing friends and went back to work. What they didn’t realize was they were entering my world for nine days. They were entering the space I’ve been sitting in for almost a year for nine days. And they couldn’t hack it.
What frustrates me the most is I know if many of my friends went into the hospital, they would expect different treatment. They’d be upset if all their friends went for a meal without them once they were out. For them, being in the hospital would trigger a mass outpouring of concern and help.
But me, well, for me it’s “normal.” “It’s not the same.” “I’m used to it.” Let me tell you – you do not get used to the hospital. You do not get used to the pain. The boredom does not become more tolerable and the loneliness isn’t easier to bear. It gets harder, it adds up, it piles on and makes life that much harder to get on with. But, like a soap opera that drags on for too long, people get bored. They want something new. Meanwhile, I’m left to get on with it like I have for 15 years. Like I’ll be forced to for the rest of my life.
And, childish as it sounds, it is not fair. It is not fair that you get to go and live your life while I’m put on hold. It is not fair that your difficulties, however minor, are treated with so much more concern than mine. And, it is not fair that I feel I have to quiet my story to make it easier for you to
tolerate. Because, frustrating as it is, my choices are not your choices. I need you more than you need me. And it’s me that needs to work out how to make this work, not you.
I wish you understood that.
I wish you knew our friendship is like that between two birds, one in a cage and one out free. If the free bird doesn’t visit the caged bird, the caged bird can do nothing but hope, and wait, and sing out for the free bird.
Well, this is me singing.
The song might not be pretty, but it’s my song. How will the free bird respond?
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Thinkstock photo via IgorKrapar.