He had a worrying new rash. Reddit had the answers

People struggling to access professional medical advice are increasingly turning to unqualified strangers for advice
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It started as a spot. One unmemorable day last summer, 22-year-old Aidan noticed a little red lump on his cheek – naturally, he thought very little of it. When the patch started to grow and flake, he assumed it was his own fault for picking at it. But over the course of a couple of weeks, the redness spread, creeping down towards his stubble and up towards his eye. One morning, Aidan woke up, looked in the mirror, and felt a flood of panic. A red, swollen, and flaky rash was taking up almost a quarter of his face. His first instinct? To head to Reddit.

According to a 2016 YouGov survey, 51 per cent of adults in the UK use the internet to self-diagnose when feeling unwell; roughly a third of Americans do the same. Yet while most of us are familiar with “Dr. Google”, not many of us would turn to Reddit for help. “I knew that it was one of these places that I could get any sort of information that I would want,” Aidan – a Redditor of six years – explains. After a quick search, Aidan found r/DiagnoseMe, “the internet’s walk-in clinic”.

Just under 19,000 people subscribe to this subreddit, which features everything from blazing rashes to mysterious markings to suddenly yellowing eyes. Though the sub’s moderators have verified some users as doctors, the vast majority of commenters add the disclaimer “NAD” (“not a doctor”) before their posts. You’d be forgiven if you have the opposite instinct to Aidan – if the idea of anonymous Redditors commenting on your body makes you want to run for the hills.

And yet, the popularity of r/DiagnoseMe tells us a lot about healthcare systems globally. While the sub’s tagline, “Because going to a doctor would be too expensive” implies it has a single benefit for a singular nation, it is visited by a variety of people for numerous reasons. Some have been dismissed by doctors. Some are waiting too long for an appointment. Some are riddled with anxiety about wasting their doctor’s time. Others are scared to visit healthcare facilities during a pandemic (in the last year, the sub’s following has grown 37 per cent).

“We were in the height of the pandemic at the time,” Aidan says, explaining his decision to post pictures of his rash, “I was weighing up the risk of potentially being exposed to Covid [in A&E].”

When Aidan posted his rash, one of the first commenters urged him to, “Get to the hospital NOW”. “It was terrifying,” he says. Though he decided before posting to “take the comments with a grain of salt,” the urgency and lack of detail in the comment filled him with fear. Spurred on by similar comments pressing him to seek help, Aidan rang Scotland’s NHS 24 number and spoke with a doctor who prescribed him antibiotics and steroid cream.

“I went to Reddit first because I thought that it was a bit less official than going straight to the NHS and burdening their helplines,” he says. Aidan’s experiences expose gaps in the UK healthcare system. While Redditors were able to see his face and offer their (inexpert) opinion, he had to beg the NHS doctor to give him her email address in order to send over some pics.

“Because it was over the phones there was only so much information that I could really give her, so I kind of kept pushing her, ‘Can you please just let me send you a photo of this?’. She doesn’t normally give out her NHS email address but thankfully on this occasion she did.”

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.

It is extremely common for people to share X-rays and scans on the sub, usually looking for answers because they have to wait for their next doctor’s appointment. Also common are skin conditions like Aidan’s, and the sub as a whole is very picture-heavy (r/AskDocs, in contrast, is mostly text). While waiting times in traditional healthcare settings are a problem, patients on r/DiagnoseMe risk going ignored if their post isn’t sufficiently grabbing. Aidan deliberately designed his post to be interesting, collaging five pictures of his rash spreading.

Still, the subreddit has its success stories – from reading blood test results to reassure a woman that she was not pregnant to correctly diagnosing transient global amnesia to insisting people get antibiotics. A March 2021 study from Harvard Medical School asked 5,000 Americans to provide a diagnosis for a list of symptoms before and after using Google. Diagnosis accuracy jumped 4.2 per cent after Googling, with 54 per cent offering a correct diagnosis. The study’s authors concluded, “contrary to concerns of its harmfulness, an internet search was associated with modest improvements in diagnosis”.

“I don’t know what I would have done had I not put up that post, but I definitely don’t think I would have taken as quick action,” Aidan says. Comments about the danger of the rash approaching his eye, “pushed me towards contacting the NHS”.

Because Aidan never got to see a doctor in person, he still doesn’t have an official diagnosis, but thankfully the pills and cream fixed things within a week. “I’m sitting here with nice, clear skin on my face now.”

As such, Aidan recommends the sub to others – with a caveat that every comment should be taken with a grain of salt. Clarke says while there are obvious “pitfalls” with r/DiagnoseMe, these are pitfalls that exist offline too. “I can’t begin to count the number of times where either myself or someone has talked about a symptom they’ve been having and all the mothers and mothers-in-law and grandfathers come out of the woodwork with their remedy,” he says. “I really just see [the sub] as an expression of what we do in our everyday lives. I think we often want to help one another.”

The story of r/DiagnoseMe is unexpectedly wholesome: people on the internet can be remarkably helpful at times. The pressing question is: should they have to be? While r/DiagnoseMe is clearly a rewarding space for some, the sub is inherently riddled with risk. Though it is heartening that many have found help on the sub, its existence highlights an abundance of problems with traditional healthcare. In a world without overworked doctors, long wait times, expensive bills, and anxiety-inducing receptionists, would this subreddit need to exist?

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This article was originally published by WIRED UK