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<span style="color: rgb(51, 51, 51);">&nbsp;There is an enormous capacity for how social media in our current age can be utilized. In cases of chronic diseases such as&nbsp;<span style="color: rgb(51, 51, 51);">Ehlers-Danlos Syndrome (EDS), there is a potentially overwhelming global network through which to source information, and both the good and the bad come along for the ride.</span></span>

Social media use by patients with hypermobile EDS

Sam Vershaw

*For open access link to the full article click here

Every 6.4 seconds a new social media account is created.

Since the rise of social media in the early 2000s, access to connection online has multiplied tenfold. On the average day, we spend about 2 and a half hours scrolling through social media. And this number will likely increase as the accessibility to modern electronics expands. In many ways social media has changed the way we communicate with the world around us. A multitude of platforms allows us to research dinner recipes, connect with people across the country, sell household items, and share life updates with just the tap of a few buttons.

While media access has brought these positive outcomes and hastened the immediate availability of information, it also creates avenues for miscommunication, misinformation and escalation of hateful discourse in society today. These myriad features associated with social media use, combined with an inherently underdiagnosed disease like Ehlers-Danlos Syndrome (EDS) create a potentially overwhelming global network through which to source information. And both the good and the bad come along for the ride.

Over the last year, Dr. Tom Doyle and I worked on a team led by Dr. Colin Halverson to examine these issues. We recently published our analysis in an article entitled “Social Media Use by Patients with Hypermobile Ehlers-Danlos Syndrome.” The interviews we conducted with hypermobile EDS (hEDS) patients dive into the benefits of social media use for patients with an underdiagnosed disease and the pitfalls that accompany those same interactions. Most participants from the study agreed they enjoy time spent on social media and found that their online interactions allowed them to connect with others they felt they could relate to, and otherwise had not found that type of connection in offline life. However, many also described situations where the presence of “trolls” or others with ill-intentions began to undermine the legitimacy of symptoms related to their health condition and the necessity for lifestyle changes.

A few participants described initial interactions with a subreddit entitled r/illnessfakers, where individuals with chronic diseases are targeted as exaggerating or falsifying symptoms for increased social media attention. Some postings on the subreddit have gone so far as to accuse these individuals of having “Munchausen by Internet,” the idea that they are not chronically ill with a condition like EDS, but rather are simply shopping around for a diagnosis. Participants interviewed in our study commented on the subreddit, r/illnessfakers, stating,

“They say they’re making things up and they’re just flexible,” one participant explained, stating that the users of the subreddit go on to dox and harass these people and their families. “It’s intensely sick. I can’t think of something more troubling” (16). One interviewee noted that people targeted by this subreddit have reportedly committed suicide as a result of the influx of abuse.”

As you can imagine, this subreddit inflicts harmful allegations on those dealing with chronic illnesses. In addition, giving those with confirmed EDS symptoms or diagnoses an undeserved reputation, often spreading misinformation about the disease and misinforming followers of the subreddit about the lifestyles required by those with EDS. Our study confirmed that those with EDS can find strong communities of support online, but this is made difficult with pages geared toward criticism and judgement such as this.

On top of that, now, not only do those with EDS need to pay mind to media sources with malicious intent such as r/illnessfakers, but also those that believe they are spreading helpful information and are not thought to be inherently destructive. With the rise of online social media use and media outlets, influencer culture has also made a detrimental impact on information surrounding the EDS community, as the prevalence of “party trick” content emerges, leveraging their joint flexibility or skin stretching capabilities with the goal of gaining media attention. Those with EDS also need to worry about content that portrays the real effects of their disorder, but from an overemphasized standpoint. Participants in our study agreed that the production of these party tricks or disturbing images promoted content which produced “the most views” but also encouraged unsafe behaviors, thus misinforming impressionable users with false information on connective tissue diseases.

As previously mentioned, there is an overwhelming capacity for how social media in our current age can be utilized. In the case of chronic diseases, there are so many positive aspects one can gain from engaging with online communities, with the hope that the positives will outweigh the negatives. The majority of our participants would tell you, however, regardless of information: take it all with a grain of salt.

Samantha Vershaw is a Research Assistant for the Indiana University Center for Bioethics

Dive in to the open access article here.

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Sam Vershaw

Sam Vershaw is a research assistant at the IU Center for Bioethics.

The views expressed in this content represent the perspective and opinions of the author and may or may not represent the position of Indiana University School of Medicine.