Being Less than Patient

Being Less than Patient, www.juliedevaney.com

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.

About the author: Julie Devaney is a patient activist living in Toronto. She is the author of My Leaky Body (Goose Lane Editions: 2012) and co-editor of MESS: The Hospital Anthology (Tightrope Books: 2014). My Leaky Body was one of Quill and Quire’s Top Five Non-fiction books of 2012. Julie was named a Woman Health Hero by Best Health Magazine in 2011 and has been profiled on CBC Radio’s White Coat, Black Art and The Current, in Chatelaine and the Toronto Star. Her writing has appeared in The Globe and Mail, Toronto Life and numerous anthologies. Julie has given hundreds of presentations at medical schools, nursing conferences and theatres throughout Canada and in the US and the UK using participatory techniques with patients and professionals to formulate strategies for change and innovation in healthcare. Her work at the University Health Network in Toronto has transformed real patient stories into staff training.
Category: Health Update
  • Melanie November 16, 2016, 8:38 am

    It always amazes me the assumptions people make about another persons illness. Although, I met a father recently whose 24-year old daughter died from metastatic breast cancer this year and he blames himself. He is so sure it is something that he did that caused her to be sick and I just wanted to cry for him (and did when I got home). I’m going to go check out that dietitian blog now. Thanks for sharing.

    • Julie November 29, 2016, 5:08 pm

      Hi Melanie, Thanks so much for commenting. I only saw this today when I logged in to update. I probably got an email that is still in the swamp of emails I haven’t managed to get through from the hospital days. It is so, so sad that we use energy on self-recrimination that we could be using on self-care. And infuriating that I’m sure the man you spoke to found no shortage of sources to fuel his self-blame.

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