Researchers urge doctors to talk social media with hEDS patients

Study shows clinicians can help patients find tools, avoid misinformation

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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Researchers called on doctors to initiate conversations about social media with their hypermobile Ehlers-Danlos syndrome (hEDS) patients to help them find tools they can use and avoid misinformation.

People with hEDS frequently use social media to connect with each other and learn about their disease, though social media can also be a source of stress and bad health advice, the researchers noted.

The trio of scientists from Indiana University School of Medicine set out to understand how hEDS patients use social media, aiming to facilitate more productive discussions on the topic between patients and clinicians. The results were published in the study, “Social media use by patients with hypermobile Ehlers–Danlos syndrome,” in Molecular Genetics and Genomic Medicine.

hEDS, the most common type of EDS, is a disorder that affects connective tissues, resulting in symptoms such as unusually flexible joints and fragile skin.

It is common for people diagnosed with hEDS not to know anyone else diagnosed with the condition, which can lead to feelings of isolation. Over the last decade or two, many people with rare diagnoses like hEDS have found new opportunities for connection and information on social media platforms. Yet despite its widespread use, doctors and other healthcare providers rarely talk to their patients about social media.

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A roomful of zebras

People with hEDS often experience long, difficult journeys to get diagnosed, and many have symptoms that limit their ability to be out and about, the researchers said.

“Due to their protracted diagnostic odysseys and often physically limiting symptoms, patients with hEDS may be particularly positioned to turn to [social media],” they wrote.

For their study, the team surveyed 24 patients diagnosed with hEDS. All but three also took part in interviews to discuss their experiences in more depth. The patients ranged in age from 19 to 63, and the majority identified as white, cisgender, and female.

Most participants (67%) said they used social media two or fewer times per day. Nearly half (48%) reported less than an hour of social media use per day, and none used social media more than four hours a day.

Facebook (used by 95%) and Instagram (75%) were the most commonly used social media sites. Several participants mentioned the Facebook group EDS Zebra Memes, which shares EDS-specific memes and jokes.

Patients generally reported that social media had been a valuable way for them to connect with other people in the EDS community and feel less alone in their condition.

Social media offered “a place where I can know people like me,” one young woman said. “You can accept yourself more because you don’t always feel like you’re the person who has something wrong with you.

“When you’re in a room full of other zebras, you’re normal.”

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Taking information with ‘a pile of salt’

In addition to offering connection, participants said, social media could be a valuable source of information. According to the team, hEDS patients described social media as a way to obtain “accessible, wide-ranging information about care and experiences of other patients, as well as the potential for more empathetic spaces for sensitive conversations than they had come to expect from the healthcare system.”

Five participants who had never heard of hEDS saw videos about the condition on TikTok, which prompted a “eureka” moment and ultimately helped them get diagnosed, the researchers wrote.

Participants also found social media a good place to get information about topics that are taboo or uncomfortable to discuss with doctors, such as safe sex practices for people with hypermobility and alternative strategies for pain management.

But patients were clear about the need for information found on social media to be thoroughly fact-checked and vetted, noting that any tips from social media should be taken with “a grain of salt every time, maybe a full pile of salt,” according to the study.

To help sort useful tips from misinformation, the patients recommended that people with hEDS try to learn as much as they can about the disease from reliable sources, building a knowledge base that can help them judge further information.

“There has to be a specific base level of education that you have to have to be able to weed out the trash,” one patient said.

Several patients reported other negative experiences with social media, ranging from feeling left out when seeing friends doing things they can’t, to encountering “trolls” who harassed them or accused them of faking their illness, the researchers said.

Patients also noted that information overload could be overwhelming.

“While seeing others with similar symptoms and diagnoses was often validating and even reassuring … dwelling in these spaces and witnessing others’ struggles in such a condensed fashion can be scary and worrisome, they told us,” the researchers wrote.

Overall, the patients expressed a desire for guidance from their clinicians about social media platforms.

“It is crucial for clinicians to establish an open and non-judgmental space for conversation,” the researchers wrote. “Patients should feel comfortable raising and discussing their [social media] experiences, questions, and concerns, including information that they have encountered in these online communities.”