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When You're Stuck in the Confusing State of Being 'Sick, but Not That Sick'

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I’m 21 years old. I’m a former fitness coach, dancer, actress and model. I’ve done things some people wait a lifetime for.

Then my body said no. Get off the stage and into bed. Your joints aren’t going to work. Your head will hurt. You’ll be somewhere past tired all of the time. You’ll be dizzy. You’ll be nauseated. You’ll want to give up.

I developed a mystery condition, one that no one can quite pinpoint: fibromyalgia, Lyme disease, lupus? When the doctors can’t tell you what the f*** is wrong, it’s hard to stay positive.

I guess that’s why I’ve experienced all of the good things I have. Maybe the human body can only experience so much before it breaks down.

I grab a seat on the train and can’t give it up to the first elderly woman to walk in. I look like that entitled millennial who can’t be bothered.

I have to say no to countless outings and events. Sometimes it’s just too hard.

Sometimes I say yes regardless. I’ll be in bed a few days to make up for it.

I’m constantly torn between “I won’t let this hold me back” and “I need to listen to my body.” Inspirational stories pop up all over the internet and tell me how there’s so much more to me than my illness.

I finally caved and bought a cane: Viktor, my “supportive boyfriend” to help through this. He holds me up when the cobblestones are spinning and reminds me when there’s a wall in front of me. There’s a sort of kinship that forms when I meet the gaze of the elderly man leading his walker through Waitrose. There’s a new look in the eyes of the coffee shop guy. Confusion? Pity?

No one asks.

I can’t help but grieve for the “old me” (though I would argue that the current me certainly feels older). I’m glad I’ve gotten to do as much as I have either way.

But, at the same time, I’m not that sick. I can still walk and dance with a decent partner. I’m lucky enough to go to university and travel the world. It could be so much worse.

I hold myself back from asking for help. I can cook dinner and clean the house and finish my work.

I can’t expect people to understand. You can’t unless you’ve been there and I wouldn’t wish this on anyone. Hell, I can’t understand it myself.

All I can do is try. I can try to be “normal.” I can try to compromise when my body rebels. I can try to find the place between pity and care.

And I’ll be OK.

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Thinkstock photo via jacoblund.

Originally published: May 5, 2017
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