I think within the chronic illness community there is a disproportionate burden on anyone who is dealing with a condition for which research and resources are little, even if the community is strong and supportive. Can you tell us more? Based on your research, do you find that this is particularly true for endometriosis compared to other conditions (eg invisible ones)? In your book, you focus on the additive burden on people living with endo to be their own advocates.
So, I felt really motivated to try to challenge that and, hopefully, begin to rewrite it. It’s almost like there’s a script to it that’s been around for hundreds, if not thousands, of years. Or from the people in our lives who don’t really understand. We’re talking about these experiences in the same way but we’re also hearing - with disconcerting consistency, really - the same things from medical professionals. So often when I read accounts, or talk to people, the stories are really verbatim. Both in terms of the historical precedent and, presently, just how many women tell the same story.
I think the most surprising thing has always been, and continues to be, the sheer breadth of this issue. I also reached out to folks like Noemie who I figured out were sort of on the cusp of research which was exciting both because I wanted to have their perspective and expertise but specifically with Citizen Endo I was so pleased to be able to talk about the work in the book and be able to use the platform I’ve acquired to continue to elevate it. So I relied a great deal on the help of librarians both where I live and in NYC. Actually, by the time I started writing the book I was no longer at that job and therefore didn’t have nearly as many resources to work with.
I read a lot! Mostly in the beginning I was parsing through medical journals because, at the time, I was working in a hospital and had access to those resources. Then, subsequently, trying to unravel what that diagnosis met. The research piece was probably more intuitive for me because I love research to begin with, but also because at that point I’d already been doing a lot of research as part of trying to get a diagnosis. How did you find resources for the research your book? What surprised you most during this search as both a researcher and a patient? Your book skillfully mixes personal account and research- discussing your personal journey with endometriosis while also explaining the latest scientific findings and providing background on women’s health.
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