by Carolyn Thomas ♥ @HeartSisters
I read recently about a conference on breast reconstructive surgery following mastectomy, to which not one single Real Live Patient who had actually undergone breast reconstructive surgery following mastectomy was invited to participate. This is, sadly, yet another example of “Patients Excluded” health care conferences – in stark contrast to the growing number of notable conferences that have garnered the “Patients Included” designation.*
The result of attending a “Patients Excluded” conference is just as you might imagine: hundreds of people working in healthcare getting together to talk at each other about caring for people who aren’t even at the table. Or, as one physician arguing for “Patients Excluded” conferences protested online:
“I already hear patients’ stories all day long in our practice. Why should I have to listen to more stories at my medical conferences?”
Continue reading ““We are all patients.” No, you’re not.”
Note from Carolyn: “I’m taking the weekend off as we celebrate with family and friends the wedding of my favourite daughter, Larissa to her longtime beau Randy. So meanwhile, I’ve obtained permission to republish this guest post by Casey Quinlan for you. Enjoy!”
It’s not easy hearing your name and [insert dread diagnosis here]. I know this only too well after having to find the funny in my own journey through cancer. Cancer is, however, most often a diagnosis that you fight to a defined end. What’s it like to find the funny in a chronic condition?
I have a number of friends who are battling MS, one of whom, Amy Gurowitz, shared a link on Facebook the other day to Jim Sweeney’s online empire of improv humor and chronic disease. Jim’s MS journey started with vision problems in 1985, he was officially diagnosed in 1990, and has been dealing with the disease – finding the funny most of the time – ever since. Continue reading “Finding the funny when the diagnosis isn’t”