…the Water Genie told Haroun about the Ocean of the Streams of Story, and even though he was full of a sense of hopelessness and failure the magic of the Ocean began to have an effect on Haroun. He looked into the water and saw that it was made up of a thousand thousand thousand and one different currents, each one a different color, weaving in and out of one another like a liquid tapestry of breathtaking complexity; and the Water Genie explained that these were the Streams of Story, that each colored strand represented and contained a single tale. Different parts of the Ocean contained different sorts of stories, and as all the stories that had ever been told and many that were still in the process of being invented could be found here, the Ocean of the Streams of Story was in fact the biggest library in the universe.
-Salmon Rushdie, Haroun and the Sea of Stories
The diagnosis stories of people with chronic disease are an unappreciated resource in an unorganized library. This discussion is a continuation of a question I was first curious about a few years ago: Are other people’s diagnosis experiences with Crohn’s disease like mine? I combined my diagnosis story with another blogger’s story and made a piechart of our experiences . To further accommodate my curiosity I posed a question in Crohnsforum and analyzed the responses . For this update I’m adding more data; this time from a Facebook group for Crohn’s patients called Crohn’s Disease . This is the updated question I posted: “Was your Crohn’s misdiagnosed? If so, how many times? And what were the wrong diagnoses? A few years ago I studied this question and got a decent amount of responses. The results are published but I’d like to add to the data set. So if you feel like telling your story, I’ll add it to the data and republish with the updated results.” The new responses more than doubled the previous data set. The new results are significantly more detailed: More responses means more misdiagnosis categories and I’ve grouped responses more thoughtfully, there’s analysis of how many misdiagnoses typically occur, how long it took to get a correct diagnosis, an analysis of the gender differences of the diagnosis experience, and some examples of iatrogenic events besides misdiagnosis.
This research shows, even though the data set is small, that there’s meaningful differences in the Crohn’s diagnosis experience of males and females. It wasn’t a result I was expecting. The dangers that our healthcare system present Crohn’s patients, both as a result of misdiagnosis and unnecessary treatment, aren’t equal opportunity.
All the data I’ve gathered is open to anyone who wants to take a look. My spreadsheet organization, scrap work, R code, and raw data files, are all available for download as a zip file: Crohn’s Diagnosis Stories raw data files.