2.1 Ethical compliance

This qualitative study was conducted with the approval of the Indiana University Institutional Review Board. Participants were required to provide both written and verbal informed consent before their involvement in the study.

2.2 Participants and procedures

The study was conducted between April and August 2023 and involved individuals recruited from the Indiana University Ehlers–Danlos Clinic. To be included in the study, participants had to meet specific criteria, including having a robust clinical diagnosis of hEDS, a minimum age of 18 years, and proficiency in the English language. All eligible candidates from the clinic who had agreed to be contacted regarding research were invited to participate in the pre-survey. Pre-surveys were meant to provide support for the construction and interpretation of the subsequent qualitative interviews and were not intended to reach a number relevant for statistical validity.

Interviewees were selected from pre-survey respondents through convenience sampling, which was carried out irrespective of SoMe utilization statistics. This method ensured that both individuals who intensively utilized these platforms and those who did not were included in the study. As appropriate to qualitative research of this nature, the sample size was not pre-determined (Saunders et al., 2018), and instead, recruitment from the pre-survey cohort was closed when thematic saturation was achieved (Strauss & Corbin, 1998).

2.3 Instruments

The pre-survey encompassed various aspects of participants' SoMe engagement. It collected information about the SoMe platforms participants actively used, the frequency of their usage, their attitudes toward these platforms, their perception of the platforms' impact on mental health, the role of SoMe in encountering misinformation and conducting research, as well as the influence of online social life and networking. Questions for the pre-surveys were selected after an extensive review of the literature. The pre-survey instrument is available in the Data S2.

The interview guide was structured into sections to explore participants' experiences and perspectives regarding their SoMe usage. It explored how they utilized SoMe, their emotional and cognitive responses to such usage, the ways in which SoMe influenced their perceptions and understanding of EDS, its impact on their social lives and advocacy efforts, and their interactions in online support groups and communities. These questions were likewise derived from our literature review and informed by the pre-survey responses, addressing salient issues highlighted by previous research into SoMe and rare-disease communities (Koinig & Diehl, 2020; Morgan & Subbiah, 2023; Yabumoto et al., 2022; Zhu et al., 2021). The interview guide is available in the Data S2.

Interviews were conducted over the phone by one researcher (CMEH), who is a medical anthropologist and bioethicist and has doctoral-level training in qualitative research methods. During the interviews, the interviewer took detailed field notes. Additionally, each interview was audio-recorded and transcribed by MacWhisper, a HIPAA-compliant, AI-based transcription program. Researchers uploaded transcripts to Dedoose, a mixed-methods analysis tool (Dedoose Version 9.2.007; Los Angeles, CA). Thematic analysis based on the flexible, recursive phases outlined by Braun and Clarke (2006) was selected as the best method to investigate these interviews qualitatively and systematically (Braun & Clarke, 2023; Campbell et al., 2021; Holstein & Gubrium, 1997). This method allows the search across interviews for patterns of meaning. We began by reviewing the interview transcripts and familiarizing ourselves with similarities and potential points of interest. Then, we generated an initial coding tree, which we refined through discussion. As this is a recursive method, we moved back and forth between coding and reviewing. We then sorted the codes into themes, which we named, reviewed, and defined as a group. We finally produced the write-up of the report.

3.1 Sample description

Surveys were completed by 24 individuals, 21 of whom went on to complete a subsequent interview. The average interview length was 49 minutes, with a range of 21 to 83 minutes. The average age of participants was 39, with a range of 19 to 63 years. The majority identified as cis-female and White. Other participant demographics are summarized in Table 1.

In the interviews, we identified four primary themes. (1) We found that SoMe was a major source for meeting and befriending others with hEDS. (2) Participants also used SoMe to seek information about their condition, though they paid special attention to vetting information encountered in these virtual spaces. (3) They detailed the risks and downsides of SoMe use from their own experience. And finally, (4) they stated that clinicians did not discuss SoMe use with them despite the perceived utility of such conversations. We provide a deeper analysis of these themes in the remainder of this section. Personal details have been redacted, but a unique number has been assigned to each participant and is given after respective quotations.

3.2 Usage statistics

The majority of survey respondents reported opening a SoMe site or application two or fewer times per day (67%). Additionally, nearly half of survey respondents (48%) reported spending less than an hour per day using SoMe, and none reported using it more than 4 h per day. The slight majority of our interviewees felt that the amount of time they spent on SoMe was appropriate for them personally (53%), while the remainder felt that it was “too much” (47%). (None felt that it was too little or wished they would spend more time using these platforms.) Most survey respondents (71%) said they try to limit their time on SoMe. The majority (62%) were members of two or fewer online groups related to hEDS. A noteworthy minority, however, reported much higher utilization: 14% were members of 12 or more hEDS groups, and 10% reported checking SoMe 11 or more times per day.

Accounts on Facebook and Instagram were the most common among our interviewees. On average, they had 3.4 active accounts on different SoMe platforms. For more information on platform usage, see Table 2. Participants used Facebook to become members of private and public groups related to EDS. Their use of these groups is discussed in more detail below. On Instagram, TikTok, and Twitter/X, they followed clinicians and researchers to learn more about their condition. One quarter said they followed hEDS influencers, that is, people who use SoMe in a professional or semi-professional manner as a means to disseminate information and promote products and services related to hEDS. Twitter/X in particular was seen as a place to find “highly curated information” related to their condition (06), including scientific and academic news relevant to hEDS.

3.3 Theme 1: Social benefits of life online

The majority of our interviewees (90%) reported that their symptoms affected their ability to socialize as they desired. One woman turned to SoMe “when I was completely disabled,” since it remained enjoyable for her even when she was too weak to hold up a book to read (20). Another reported, “Usually, you're sitting around because you can't do anything, so you can still be on social media” (03). “It was a huge place of escapism when I got really sick with EDS,” acknowledged one young woman (04). Similarly, one woman stated that she primarily uses SoMe when “I'm having a really bad day” in terms of her chronic pain, because she is physically unable do anything else at that time (08).

The majority of survey respondents reported that they somewhat or fully enjoy checking their SoMe accounts (76%), finding it a satisfying or rewarding activity. SoMe use was a source of pleasant diversion. Several participants mentioned the Facebook group “EDS Zebra Memes,” a community whose purpose is to post funny images addressing issues faced by this patient population.

However, SoMe provided more than just escapism. Many participants also noted its value in raising awareness of EDS. For instance, several interviews took place during EDS and hypermobility spectrum disorders (HSD) awareness month (May), and participants described both scrolling through and contributing to that month's influx of posts related to the experience of having one of these conditions. The ability to disseminate and consume this information and at this scale was seen as a significant benefit of these global communities.

The rarity of our participants' condition meant that many of them had not encountered another person with the same clinical diagnosis in their offline life. “With something like EDS,” one woman (04) explained, “you don't typically just run into someone on the street.” SoMe, thus, was a major way for our participants to connect with others who shared their condition, and the majority (76%) felt that it had helped them meet other people with hEDS.

Moreover, the slight majority of our participants (56%) described befriending other patients through SoMe: “There are people who I would consider very, very good friends – best friends – who I've met through [Facebook] support groups” (04). One woman, feeling overwhelmed after her diagnosis, joined just such a group. She subsequently met with another member for lunch, and afterward, they started an in-person, local support group together (11). However, only 37% said that they had used SoMe for the explicit purpose of improving their social lives; virtually mediated friendships were primarily spontaneous and serendipitous, albeit relatively common. “I do have friends that I have on social media that I've never met in person, but it wasn't like I went on social media just looking for [new friendships]” (05). One woman said of another patient, “We met at one of our [EDS] conferences or something and became Facebook friends, and closer friends as the years [went] on” (21). When asked whether SoMe played an important role in their relationships, there was an even split among participants, with 48% agreeing, 48% disagreeing, and the remaining 4% equivocating.

Seeing and interacting with others with the same condition was a psychosocially significant experience for our participants. For many, this was positive: As one young woman explained, SoMe had given her “a place where I can know people like me. […] 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” (05). “It's nice to be able to say to a friend, ‘My rib slipped out again,’ and then the friend can say, ‘I am so sorry. I know exactly how you feel,’” stated a young woman (04). Another young woman described validation in seeing that she was not alone in experiencing disabling symptoms and that “other people are struggling with this, too” (07). “If you don't know people with illness in real life, even just reading that other people are going through the same thing or having the same symptoms […] is nice,” another participant explained (01). One interviewee said that she believed this aspect of SoMe had been useful for her son, who also has an hEDS diagnosis: “It helps him realize that the symptoms he experiences are real and treatments that people have given him are also beneficial, because I see him a lot of times not taking care of himself as much as he should” (08). One woman who has slowly withdrawn herself from SoMe stated that even though “I don't actively participate in it, I think that knowing that people are being seen and they're finding each other and they're finding support in each other, that's a great thing” (12).

Nonetheless, participants persisted in placing greater weight on relationships that featured an offline component. “Those I have never [met], I do feel that it puts them in an outer circle,” one woman (21) explained: “Maybe it's my gray hair showing, [but] I'm just feeling closer to somebody if I've actually had an in-person conversation and done things with [them].” In particular, participants found platforms on which people use pseudonyms (such as Reddit or Inspire) to be less conducive to developing meaningful relationships.

Many participants stated that, ideally, they would use SoMe merely to complement their offline social life. One participant said she used SoMe to “supplement, not necessarily improve” her social life (13). “I do think it has a place, but I think it definitely shouldn't be your first choice,” another woman explained (20). Some values of “offline” life were seen as irreplaceable: “It's always nice to be able to give someone a hug,” another woman noted (04). However, due to chronic pain-related disability (as discussed above), participants sometimes viewed SoMe as the only possible source for maintaining a social life.

3.4 Theme 2: Information seeking and vetting

Participants frequently turned to SoMe in pursuit of information about their condition. Eighty-nine percent said that they had used these online resources to research their condition and its potential care. Interviewees described SoMe as providing 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. However, they tempered this enthusiasm with significant concerns about the reliability of the information they encountered on these platforms.

Five participants stated that they first learned of hEDS through SoMe. They experienced it as a sort of “eureka” moment: “I had never heard of [hEDS] before,” one participant said, but the way it was described on a TikTok video matched a lot of their symptoms (19). They subsequently brought the possible diagnosis to their primary care physician and were given a clinical diagnosis. Similarly, another interviewee had used a SoMe platform to solicit the community to suggest diagnoses for her symptoms, and “in less than 72 h,” hEDS had been identified as the appropriate label for her condition (15). She likewise brought this candidate diagnosis to a clinician for confirmation. One woman held SoMe in particular esteem for the same reason: “It was lifesaving […] If there was no Facebook or social media, I don't know that I would be in as good of shape as I am” (11).

Seeking information online was seen as particularly beneficial for some patients who had “a deep discomfort with doctors” after repeated negative encounters (04). Getting advice from others online was therefore preferable to asking a clinician, since it allowed participants to avoid anxious and potentially retraumatizing hospital visits. It also provided anonymity in asking about sensitive topics that might make patients feel uncomfortable were they to seek this information in person: “Social media has been able to help with stuff that's more stigmatized,” one participant explained (19). Topics in this category included advice about safe sexual practice for patients with symptomatic hypermobility and the use of complementary and alternative therapies to manage chronic pain.

However, participants also harbored prominent skepticism about the information they encountered in virtual spaces. Users need to take all information with “a grain of salt every time, maybe a full pile of salt” (04), many participants insisted. “Take everything with a grain of salt and do your own homework,” stated another (11). While participants overwhelming (90%) believed they could judge the reliability of information they found on SoMe, the majority (64%) chose not to rebut other users who posted information they found dubious. Instead, our interviewees relied on moderators in EDS groups to address such potential misinformation. “This isn't science-backed,” moderators would reportedly caution (05). Moderators were seen to prevent users from saying things like, “I take turmeric and it helps with inflammation” (03). Some interviewees regarded moderators as essential for the proper vetting of information, but they worried that other patients—especially those newly diagnosed—did not have the requisite health literacy to recognize misinformation: “There has to be a specific base level of education that you have to have to be able to weed out the trash” (20).

The spreading of misinformation was seen not as arising “from a nefarious place,” as one interviewee put it (21), but rather from the lack of the necessary “educational level to understand the information that is in reliable sources to be able to give accurate information in their answers. But they want to help, so they're very quick to answer.” Another woman stated that emotions related to diagnosis and disability play a role in other users' spread of misinformation: “I know that the child is probably sick, and the mom is probably overwhelmed with grief and has information mixed up,” she said (14). She treats these posters with care: “I tread lightly because I know that this woman is probably floundering and grasping at straws.”

3.5 Theme 3: Risks of social media use

Only a third (33%) of survey respondents felt that using SoMe was a waste of time, but its ultimate role in patients' lives was complicated. The majority equivocated (76%) as to SoMe's impact on their emotions after logging off, reflecting overall ambivalence toward these platforms. (Only 14% reported feeling better and 10% feeling worse after using SoMe.) Participants identified several reasons beyond merely the dubious information available in these groups for this more complicated perspective, including bad-faith and overtly bad actors, witnessing the struggles of living with hEDS, and what they viewed as the damaging online self-presentation of some other patients.

Only four interviewees (21%) stated that they had encountered a “troll,” or someone who intentionally disrupts and undermines civil discourse, in one of these groups. For instance, one participant described a user who had joined a group apparently with the sole purpose of mocking patients with EDS: “Oh, I need this mobility aid. I'm so sick; I'm so dainty,” the troll reportedly wrote (19): “Oh, you're just faking your illness.” “I just doubt myself a lot more, because a lot of people [on SoMe] just don't think it's real” said one woman (16).

While trolls were reportedly rare, participants nonetheless encountered others online whom they felt were ill-intentioned. As a particular source of such harassment and distress online, several participants mentioned a specific subreddit, or discussion forum organized around a shared interest on the immensely popular website Reddit. Users of this specific subreddit, called r/illnessfakers, publicly post information about and images of influencers as well as private individuals who discuss their chronic illnesses on SoMe. In particular, our interviewees noted attacks on individuals who had stated online that they have hEDS. “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 (16): “It's intensely sick. I can't think of something more troubling.” One interviewee noted that people targeted by this subreddit have reportedly committed suicide as a result of the influx of abuse.

It was not just outsiders to the hEDS community who caused stress for our interviewees. Some features of EDS groups themselves felt stressful and burdensome to participants. While seeing others with similar symptoms and diagnoses was often validating and even reassuring, as discussed above, dwelling in these spaces and witnessing others' struggles in such a condensed fashion can be scary and worrisome, they told us. “I feel like I cannot separate myself from other people's baggage,” one woman explained (20), “I take on their emotional stress, and it ends up being more work than it is support for me.” Another interviewee described this precarious balance as: “Posts about EDS were really validating in a way that I was like, ‘See, I'm not making it up!’ [but] when you see other people throwing in the towel, that can be frustrating” (10). Another participant stated that for this reason, she has actively limited her use of SoMe: “In the beginning, I thought I needed to be a part of every group and [then] realized that I don't” (18).

Another concern participants expressed was the “fear of missing out,” or “FOMO” as several interviewees dubbed it, witnessing lives not constrained by chronic illness. “I just look at other people who are having all these great experiences, and I'm like, that would be awesome if I could do that, but I can't,” one young adult explained (02). Witnessing such positive experiences was also seen as a potential stressor of SoMe use.

3.6 Theme 4: Conversations with clinicians about social media

Many participants noted that it would have been helpful for a clinician to address SoMe use early into their diagnostic odyssey or directly after their diagnosis. Importantly, the vast majority of participants (78%) said that no clinician had discussed SoMe with them at any point. Of the minority who had experienced such conversations, they were reportedly either cursory or a brusque directive not to get involved in these online communities. One interviewee who found SoMe support groups incredibly valuable said that at the time of her diagnosis, she “didn't even realize something like that [SoMe support groups] existed” (03). She felt that she would have benefited from knowing about them immediately rather than waiting to “stumble across” them. She wished that at that critical and anxious period following her diagnosis, she had had access to the psychosocial support she has since found in these groups. Another woman indicated that it would be useful for patients to be able to discuss with clinicians the information they find on SoMe. She hoped clinicians would be “open to talking about anything that the patient learns on social media” so that they could “point them in a couple of directions [the clinicians] trust” (10). Additionally, one woman wished a clinician would have warned her about the potential dangers of SoMe and told her that “even though [SoMe] can be helpful, […] having that information overloading a person can be overwhelming” (17).

4.1 Limitations

Our participants' demographics were representative of what is known of the overall population that has managed to receive an hEDS diagnosis. However, the fact that there is a significant gender skew may mean that our data are limited in terms of the diversity of views captured, as SoMe use has been shown to vary based on that dimension of personal identity (Muscanell & Guadagno, 2012).

4.2 Suggestions for clinicians

Our data demonstrate both clear benefits and challenges of SoMe use for patients with hEDS. Clinicians appear not to be discussing these important online resources, leaving their patients to navigate this tenuous balance alone. How should clinicians counsel patients with hEDS on the appropriate, effective, and safe use of these virtual spaces? Five suggestions emerge directly from the results of this study, supported by the explicit input of our interviewees, and may aid clinicians who commonly diagnose hEDS, such as geneticists and rheumatologists (Halverson, Penwell, Perkins, & Francomano, 2023), as well as primary care providers who provide supportive and follow-up care.

First, it is crucial for clinicians to establish an open and non-judgmental space for conversation. Patients should feel comfortable raising and discussing their SoMe experiences, questions, and concerns, including information that they have encountered in these online communities. We suggest that clinicians begin conversations regarding SoMe by establishing its potential usefulness and acknowledging its possible importance: “I've learned that social media can be a useful resource for patients with EDS. Would you like to discuss social media with me today as a part of your visit?”

Such openness is critical given that the information found online may not be evidence- or even consensus-based (Yabumoto et al., 2022). Therefore, our second suggestion is for clinicians to encourage patients to engage in skepticism and critical thinking when using SoMe. The reliability and relevance of information found in these spaces must be taken “with a grain of salt,” as several of our participants noted. Relatedly, patients should be counseled not to use SoMe to seek cures but rather to help develop effective coping strategies and improve their quality of life, and they should be encouraged to bring these suggestions to their clinicians. A helpful way a clinician can reinforce this skepticism and critical thinking is by allowing patients to vet certain information they find on social media with them: “There can be a lot of confusing information on social media. Have you encountered anything that you wanted to run by me or get my opinion on?” Furthermore, clinicians should acknowledge the variability of hEDS presentations across individuals. What patients see on SoMe will not necessarily align with their own present and future experiences.

Third, if patients describe previous negative encounters with other clinicians, they may be counseled that SoMe can help identify local and regional experts who are both knowledgeable about and sensitive to hEDS care: “Social media can be a good place to find good clinicians who understand the unique challenges that patients with hEDS face.”

Networking and friendship opportunities enabled by online spaces can be rewarding. They offer a platform for humor, socialization, and emotional support. But social support buffers taxing life circumstances—such as living with a rare or underdiagnosed disease—only insofar as it does not itself add inordinate stress and conflict (Lakey & Cohen, 2000). Thus, our fourth suggestion is that if patients feel overwhelmed, they should reflect on which groups and what content they believe genuinely benefit their well-being and interact only with them. Clinicians should inform their patients that SoMe use also has the potential to cause psychological distress and exhaustion: “I've read that social media can sometimes be overwhelming. It might be helpful to consider which groups and content are the most helpful and which might be better to unfollow or avoid.” “Just keep scrolling,” as one participant phrased it (01).

Finally, it is essential for clinicians to stress that SoMe should complement rather than replace their offline social connections and support systems insofar as possible. Patients should be encouraged to maintain strong relationships with friends, family, and clinicians where feasible: “We've learned that it is best when social media supplements in-person activities and relationships. What in-person activities and relationships can you pursue in addition to those on social media?” While such conversations may add time to the clinic visit, they have the potential to improve patients' appropriate and successful utilization of SoMe. By consulting these suggestions, clinicians can help patients to harness the distinctive benefits afforded by SoMe while minimizing potential risks and challenges.