Do you know what a life lived with chronic illness is like? If you have a chronic illness, how much do you share and how much do you hide?
Today was supposed to be a writing-book day. I'm so bone tired, I can't focus. Taken me 4 hours to write 500 words #chroniclife
— Lene Andersen (@TheSeatedView) February 2, 2015
Last week, my friend Britt (a.k.a. Hurt Blogger) did an experiment and a whole lot of people, including myself, joined her. In an effort to show the unvarnished truth about living with chronic illness, Britt committed to 48 hours of tweeting about hers with some specific parameters. I got started a bit late and had to quit early, but did my best to tweet every time my variety of chronic illnesses made themselves noticed.
I wasn’t the only one who joined in — you can see all the others in Britt’s Chronic Life Twitter list or search for #ChronicLife. It also spawned a spinoff about parenting with chronic illness. Do a search for #ChronicMom to see the results of that.
Seeing the reality of all these lives lived with chronic pain shared in public was incredibly powerful. Bearing witness to someone not pretending for two days and sharing their unvarnished truth was an honour. Learning about the variety of ways in which chronic illness impacted daily life was a real education and I think for all of us who participated, as well.
At first, I found it difficult to be public about how my chronic illnesses manifest themselves. Not because I consider it private — long ago, I made a commitment for my blog to be a place of emotional honesty about chronic pain and RA. As social media has entered my life, I've tried to honour that commitment there, as well.
It was difficult because there is so much I ignore.
Filtering out much of the noise that comes with chronic illness become second nature. When you live long enough with the pain, medication, side effects, and other detritus of chronic illness, it becomes an instinctive, subconscious thing. You get busy with life, focus elsewhere, and move on.
Stopping that filter was as educational as watching others stop their filtering process. It made me realize how much of my life is accompanied by this background soundtrack and how much I do filter out. Apparently, my promises of emotional honesty only go so far, even to myself.
In her post after the experiment, Britt mentions the concern of appearing to whine when you’re honest. And that’s very much a part of it. Yes, we are honest about much of our illness to educate and raise awareness, but it appears that we all draw a line when it feels like it might be “too much.” Too much to whom? To the healthy? To others in the community? To ourselves?
At the end of this wonderful experiment, I felt educated, empowered, and very much part of a community. And I feel a lot less likely to judge myself when I’m honest.