A little while ago, as I was pondering the title for my public facebook page, my first impulse was for the word ‘SHAME’ to be placarded on it. Something like “Ditch the Shame, You’re Freakn’ Amazing!” My husband, who doesn’t have a chronic illness and who has heard me talk about it a lot ever since I decided to do this work publicly, thought it was a good idea too. And in a way, it was, because whether we admit it to ourselves or not, somewhere inside, on the surface or hidden deep down, we do hold shame about having a chronic illness. It’s pretty much inescapable in this society: You got chronic illness, you got shame.
But then I thought back to my younger self dealing with chronic illness, and I imagined someone bringing up the idea of SHAME—or worst, telling me I HAD shame and I should deal with it! I would have been SO TURNED OFF, uttered a sharp F*** YOU, and moved on quite angrily thank you. (okay, I probably would not have said it in actual words but I would have felt it and thought it pretty darn intensely!)
It’s a strange thing but somehow, the mere consideration of the word SHAME had the power to conjure up a dangerous opponent who had the ability to take down my strength and resolve. I could NEVER allow myself to explore that sentiment. Better leave the ‘thing’ alone as "He-Who-Must-Not-Be-Named".
Support groups had the same effect (I bet you’re with me on that). Some people (including doctors) suggested they could be helpful but I viscerally hated them (it’s a strong word but it’s the right one—even more so for someone suffering from ulcerative colitis!). I found them to be literally revulsive and consequently, never stepped into a single one. In the same way as “He-Who-Must-Not-Be-Named", joining would have meant admitting my ‘thing’ and honestly, I always imagined a bunch of whiny victims sitting around in a circle and commiserating. You would NEVER see me there.
I don’t really know how to explain this, but this kind of rejection is a reality for many who live with a chronic illness, perhaps mostly in the early years of dealing with it (maybe all along). Why? Because most of us are strong and defiant and swear our illness will never define us. I think that looking for our shame (and finding it) somehow makes us victims (not that it should). And once you’re outed as a victim (to the world and to yourself), your life is no longer the same.
I ended up exploring the contours and content of shame and I’m now on friendly terms with it (mostly). In fact, facing this demon can be beneficial. Sometimes, the things we find ourselves avoiding have the most to teach us.
In the end, I decided not to use “shame” in the banner, not for now anyway. Shame will still be part of a lot of conversation, but participation will be optional.
Where are you in your journey with shame?
(BTW, all answers are good. It comes and goes. It’s the name of the game)
P.S. You’ll notice I actually did use SHAME in the title of my website homepage video. In that case, I thought it was appropriate.