Madeleine, a 19-year-old medical student and chief moderator of r/DiagnoseMe, thinks traditional healthcare providers could learn from her sub – she argues that the ability to provide pictures could transform online appointments. Yet she believes the most revolutionary aspect of her sub is that it promotes self-advocacy.
“I’ve had my fair share of really poor doctors that don’t listen,” Madeleine says, “As a young woman, I don’t necessarily feel that my voice is always heard.” Madeleine believes her sub provides people with the tools to speak up for themselves.
r/DiagnoseMe is technically 12 years old, but when Madeleine stumbled upon it around four years ago, the page was empty and dead. She messaged its creator, who allowed her to take over, and she revamped it, adding nine rules. One that is impressed upon the sub’s users over and over again is rule six: “This subreddit is not a replacement or supplement for a doctor. You should not, in any way, avoid seeing your doctor or alter the frequency of your doctor visits because of anything said in this subreddit.”
In 2012, Reddit updated its user agreement with a “Medical Information Disclaimer” explicitly stating, “The Website is not a forum for the exchange of medical information, advice or the promotion of self-destructive behaviour” before adding in all caps that, “THE INFORMATION ON THIS WEBSITE IS PROVIDED FOR EDUCATIONAL AND ENTERTAINMENT PURPOSES ONLY, AND IS IN NO WAY INTENDED TO DIAGNOSE, CURE, OR TREAT ANY MEDICAL OR OTHER CONDITION.” While this disclaimer no longer features in Reddit’s current user agreement, various subreddits do ban their users from soliciting medical advice.
Madeleine believes subs like hers are important because patients can share their experiences. Though there are much larger subreddits solely for speaking to doctors, Madeleine argues that “everyone has some experience” and some users can “provide valuable experience that doctors don’t necessarily have.” While the danger of misdiagnosis seems incredibly high, the subreddit is remarkably good at self-policing, and the top comment on the majority of posts usually features the words “go see a doctor”.
And the sub has its own doctors, too. Jacob Clarke is a 31-year-old MD from Kansas who works for FORWARD, The National Databank for Rheumatic Diseases (he verified his identity to me by sending an email from his work address). Clarke – who suffers from inflammatory bowel disease and enteropathic arthritis – has experienced his fair share of dismissive doctors over the years and likes to comment on r/DiagnoseMe to “validate concerns”.
“Reddit really is just a very lean way of communicating,” Clarke says, contrasting the site with the “multiple layers of bureaucracy” involved when a patient seeks help from a traditional healthcare provider. “The amount of work it takes for a patient to carve out time to go see their physician or to carve out time to better understand a condition can be overwhelming for many.”
Which isn’t to say Clarke thinks r/DiagnoseMe can replace going to the doctor – instead, he leaves comments to “catch a few of those patients who have fallen through the cracks and redirect them back towards the health system.” He doesn’t let other commenters know he is a doctor because, “I really don’t want someone trying to take my word as gospel.”
Of course, this is the internet – not everyone on the sub acts as appropriately as Clarke. Madeleine says the biggest moderating challenge is deleting comments from trolls who post “This is cancer.” “It’s a horrible joke but people do make that joke a lot,” she says. Other posters who are trying to be helpful can end up being unhelpful, such as the poster who told Aidan to rush to the emergency room without providing any context, or the person who incorrectly claimed someone’s spinal fluid was leaking after looking at their MRI scan.