Edit: Formatting on the quotes got super weird. Trying to fix that:
The first is this amazing article by Toni Bernhard, author of How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers (also amazing, by the way). Toni has a gift for explaining the common lived experience of people with chronic illness and their caretakers in a way that is clear, empathetic, and elegant without drifting too far into the "oh woe is me" or the "I will tough everything out and pretend everything is just fine." Definitely worth the read.
A few quotes in particular resonated with me:
Yes, it's okay to get sick or be in acute pain due to an injury or a surgical procedure, but then we're supposed to get better. Everyone expected that of me and I expected that of myself. For years, I felt embarrassed that I wasn't living up to the cultural normAnd:
Many of us believe that we've let our family and friends down.And:
The dilemma of how to "present" to the world. Should we spruce ourselves up and risk people erroneously thinking we can participate fully in whatever they're doing?Also:
We're often misjudged by others if they see us looking nice or being active in any way. Healthy people tend to assume it's all or nothing: we're either sick or we're not; we're either in pain or we're not. And so, if they see us doing anything "normal," they assume we're 100% well. This has happened to me many times. Someone will see me at an espresso place with a friend and assume I've recovered, unaware that I came from the bed and will collapse on it after the visit. People aren't deliberately being insensitive. They just don't know.And:
Caregivers face their own set of stressors. They must live with the frustration of not being able to make their loved ones better. They're suddenly thrown into the role of patient advocate in the medical system, a role for which they have no training or expertise. They often have to take over the running of the household. Caregivers see us at our worst, as we put on a good show for others (for me, this means running on adrenaline), only to collapse when we're in the privacy of our own homes or apartments.
On a lighter note, I enjoy watching jackasses get their comeuppance and boy has that happened with a vengeance with The Bloggess and a particularly clueless PR company (not the one that tried to recruit me to write for a "Mommy Blog" who had obviously not read much of anything here).
I sort of regret not being in Chicago anymore as I would have given serious consideration to dressing up like Beyonce the metal chicken and going to the PR company's offices downtown to tell them "Knock, knock, motherfuckers." Pretty sure that would have been the best bus ride EVAR.