#ImBusyBeingSick Hashtag Explains How Time-Consuming It Is to Be Sick
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.”
People do not realize how time consuming having a chronic illness is#ImBusyBeingSick
Personally my days are either spent in bad sleep spells, coming in and out of consciousness
Stuck in bed from pain
Stuck in the bathroom from nausea or digestive issues
Time consuming #EDS
— Annie Segarra ????️????♿ (@annieelainey) July 13, 2018
I also think people find #ImBusyBeingSick hard to believe because they don't realize that when I'm out and about it took a lot of rest and preparation to get to that point or that I'm #FakingWell.
"It can't be that bad! I saw you just yesterday doing the thing!"
— Annie Segarra ????️????♿ (@annieelainey) July 14, 2018
It takes a lot of sick days to be granted one or a few good days.
And it takes a lot of naps, meds, self-care, and private episodes of symptoms or mental health lows to keep #FakingWell.
— Annie Segarra ????️????♿ (@annieelainey) July 14, 2018
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:
I absolutely hate it when people tell me:"Oh I wish I could lay in bed all day! haha"
It's not relaxing. It's not chill, I'm in constant pain, unable to do anything. I'm in bed, busy being sick.
— Kel (@Kytahl) July 14, 2018
Co-sign! Before I got sick, spending 90% of my days in the house would have meant reading ALL the books, making plans, & writing ALL the new things. But now #ImBusyBeingSick which is mostly unrestful sleep, staring into space, & trying to find a comfortable sitting/lying position https://t.co/C6Cdup48aT
— Laura Elliott (@TinyWriterLaura) July 13, 2018
When I can’t work, I’m not laying around at home enjoying a free day. I am struggling to perform basic tasks, like feeding myself. I am often unable to find the energy to speak. Moving at all is a struggle. I’m not enjoying my “day off” at all. Instead, #ImBusyBeingSick
— Abrea♿️, Flirty????& Cadenza???? (@Cadenza_33) July 14, 2018
The question I hate most is not "How are you feeling?" It's "What do you do all day?"
I'm shuffling between endless appointments, calling doctors or my insurance, and if it's a bad one, I'm just trying make it through the day on audiobooks and icepacks.#ImBusyBeingSick
— Beth Morton (@beth_morton) July 14, 2018
A girl asks you out. You say yes. She asks if Tuesday is okay. You have an MRI Tuesday. How about Wednesday, she says. You’re having a blood transfusion Wednesday. Thursday? You are having surgery. She thinks you have lost interest #ImBusyBeingSick
— James The Worst (@cronchmycane) July 14, 2018
#ImBusyBeingSick when people ask me what my future looks like….ummmm probably just surviving.
— chronic adventures (@bedrestrose) July 14, 2018
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.
Erin is the former senior editor and chronic illness editor of The Mighty. She joined The Mighty in 2015 and previously worked at Inside Weddings magazine, Mic, and The Huffington Post. She was also the features editor at The California Aggie, UC Davis' student newspaper. She is honored to be a part of the Mighty community!
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