On Wednesday November 16th I am scheduled for what I hope will be my surgical swan song. This will be my fifth major operation and while I don’t feel remotely squeamish about the details being public, the prospect of explaining things is exhausting. So I found a lovely patient blogger in Sheffield, UK who seems to have had the same surgery for similar reasons. Her name is Sam Cleasby and you can read all about the surgery here.
Astonishingly, Sam’s blog entry was the first google hit when I for searched “j-pouch excision”. I’m renting a wheelchair and I was looking for recommendations for the best post-surgical cushion. I have found so many traumatizingly dubious stories online that I typed with one hand, stretched as far from my body as humanly possible, peeking at the screen through the fingers of my other hand, convinced that I was about to come upon a trove of Internet horror stories. I was so grateful to find Sam instead. And now I don’t have to describe the surgery at all because she did. And honestly, with the random messages I’ve gotten from strangers on the Internet in the last ten years about what I’m doing wrong and how I’m making myself sick, it was a tremendous relief to see that someone else got it. Solidarity is a million times more comforting than sympathy (and obviously a trillion times more than thinly veiled judgment).
Since being very public with my own health and diagnoses all kinds of unexpected people feel emboldened to comment on my food choices, my life in terms of scheduling, work, choices, and my physical appearance. Ninety-nine out of every hundred messages I have received in the last ten years have been warming and supportive and usually in the vein of “I’ve been there or somewhere similar I get it and I’m thrilled to feel like you get me.”
But for the one in a hundred that stoke my fears and fuel my (and I imagine every chronically ill person’s) constant anxious inner dialogue about whether we’re doing this “right”, patient-status creates a context for other people to overestimate our intimacy and violate personal boundaries under the guise of concern about health. We can assume that most people mostly mean well, and that their aggressive benevolence and concern policing isn’t intended to shame or blame me, but the closer I get to surgery, the less energy I have for generosity about other people’s intentions.
This is one of the many factors that drove me to claim the mantle of “Patient Expert”. I am perfectly willing to accept that other people have alleviated various symptoms in their own bodies using any number of methods and food choices. But since they have literally no experience with me or my body they have absolutely no reason to assume what worked for them would work for me. Or that I didn’t spend more than a decade trying everything already and couldn’t be less interested in their scrutiny or opinion. Please read my new favourite dietitian, Diana Chard, whose blog sensibly responds to all manner of outrageous dietary health claims.
I recently looked up the definition of the word patient. I must have done this before at some point, but for good reason, blocked out the result. It originates from the Latin, “pati”— which means “suffering”. I believe I have been patient enough, in every sense. I’m opting to suffer less faux-sympathy that comes in the form of uninvited advice. My body is just going to do what it’s going to do, and as I said in this essay, I am mostly amazed that I’m still here at all. So this time, as I enter what I hope will be the last chapter in a thirteen year surgical journey, and the ending of this past year of intense pain, I am opting to be less than patient.