on *live tweeting* my #chroniclife

Deciding to take part in an initiative by Britt J. Johnson (aka Hurt Blogger), I recently tweeted snipits of an entire Saturday in an attempt to communicate the ways in which chronic pain affects my daily life.

When I initially came across the project through reading the #chroniclife tweets of others, I was overwhelmed with a sense of not-being-alone (why don’t we have a proper antonym for “alone” in the English language?). It was comforting to see how the daily lives of others are equally consumed by the task of pain management, and helped me to become more aware of the ins and outs of other invisible illnesses. It also made me feel more normal in my hourly mini-battles with migraine, especially since these tweeters were young-ish “healthy looking” folks like me.

At first, I was hesitant to participate in the project for fear of being a total hypocrite, replicating exactly the type of social media posts I typically loathe…

“Just put the boys down for a nap! Time to put my feet up and watch some TV!”

“Shovelled the walkway. Now to put on the soup for dinner!”

…because who gives a crap? These are the mundane posts I block and routinely complain about: how dare I clog people’s feeds with similar nonsense.

I did it anyway out of an urge to connect more directly with the online chronic pain community. I tried to be as matter-of-fact and non-whiny as possible, but I’m willing to bet my #chroniclife tweets are still totally mundane, and block-worthy for people who don’t have chronic pain. However, as evidenced by the increased attention to my twitter feed that day, people who are living with chronic illness care about this stuff.

migraine supplements

My mom (thinks I’m cool) said it provided her with “a little window into my life,” and several twitter users chimed in with replies to the effect of “me too!” For me, it felt like public journalling, and thus a way to more acutely tune into my own habits. It felt affirming and validating to have a written visual account of how my day revolves around the pain. In another way, I was saddened by this fact and wanted to return to the relative silence of allowing these habits to be background noise, secondary to the parts of my day that are joyful. Then again, the realization that I have reached a point where I am usually able to integrate pain management in an automatic way is, I think, a testament to some sort of progress.

to go out or not to go out

At the end of the day (literally), I felt a combination of social media fatigue, sadness, pride, and belonging. For me it was a worthwhile activity and I recommend it to anyone wanting to reach out to others with chronic pain.

For a full list of particpants visit: https://twitter.com/HurtBlogger/lists/chronic-life

What are your thoughts on the #chroniclife experiment?

 

 

4 comments

  1. I guess what I think is way less important than what you discovered by doing the online thing. I’ve got to the stage now that managing my pain is less about discrete packets of “coping” and more about living well, building in those coping things so they’re just part of life. I’ve found that attending to “what I’m doing” to cope with my pain makes my pain far more noticeable and irritating and it interferes more than when I immerse myself in doing what I want my life to be about.
    As a signal to others who don’t have to deal with chronic pain, I guess it can shed some light on the invasive nature of pain in that everything we do influences and is influenced by pain (or fatigue). Because there’s no doubt that there is no part of my life that isn’t affected by my pain (or hasn’t been affected at some point). As life goes on (I’m 50 now, I first developed chronic pain when I was around 15 or so) I’ve tried to create a lifestyle that is full of what I want in it rather than all the things I must do to manage my pain. I’ve probably integrated all those things so it doesn’t feel as “in your face” as it used to.
    You’ve made me ponder – how much of my daily life is about coping with pain, and how much is just living? and how much would I be doing as I get older anyway? Good food for thought!

    1. Yes, not in tweet form, my life also looks less like “discreet packets of coping” and is more about all the things I do to live well, period. I think you’re right that perhaps the best thing coming out of this project is a spreading of awareness (even if we are preaching to the choir). Thanks for sharing your thoughts!

      1. Wouldn’t it be cool if there was a way to give people an experiential taste of life with chronic pain? Especially life with “pain-that-comes-and-goes-and-there’s-no-magic-pill”. Empathy might be on the increase.

        1. For doctors especially…

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