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#ImBusyBeingSick Hashtag Explains How Time-Consuming It Is to Be Sick

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When people hear that you have a chronic illness, one of their first thoughts may be that you must have tons of free time to “hang out and relax,” especially if you aren’t able to work and spend a lot of time at home or in bed. They might think, if you have so much “free time,” why can’t you “work harder” at getting better? But being chronically ill is not a life of leisure — it’s filled with doctor’s appointments, researching your condition and resting, not for fun but to regain energy. Now, there’s a new hashtag that helps to explain this misunderstood aspect of chronic illness.

Annie Segarra, a disability activist with conditions including Ehlers-Danlos syndrome and postural orthostatic tachycardia syndrome (POTS), started a hashtag on Twitter last week called #ImBusyBeingSick to help explain how having chronic health challenges can keep you busy.

Segarra told The Mighty the hashtag came out of an “eye-roll of a moment” where yet another person assumed that she doesn’t “try” hard enough to not be chronically ill.

“I’m not the first person to compare having a chronic illness to a full-time job and I won’t be the last,” Segarra said. “It takes a lot of labor on top of being sick to survive being sick.”

Segarra said, this summer, her POTS has heavily impacted her days with repeated fainting and losing consciousness, and has taken a huge toll on her productivity and ability to perform responsibilities.

“I’m not lazy, I’m not on vacation, I am busy, my time is occupied by my illness. That’s just the way it is,” Segarra said.

Others with chronic illnesses chimed in, using the hashtag to talk about why being sick keeps them busy:

Last year, Segarra started the #InvisiblyDisabledLooksLike hashtag, encouraging people with invisible disabilities to share photos of themselves to reveal the different ways disability can look.

What’s your response to #ImBusyBeingSick? Share in the comments below.

Originally published: July 18, 2018
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