Post Your Journey: Instagram as a Support Community for People With Fibromyalgia

Overview of Fibromyalgia

The cause of fibromyalgia remains debated although “there is evidence for a genetic predisposition, abnormalities in the stress response system and possibly triggering events” (Fitzcharles et al., 2013, p. 646). Key symptoms include chronic widespread pain, fatigue, and abnormal sleep patterns along with comorbid conditions such as headaches, irritable bowel syndrome, anxiety, cognitive dysfunction, and depression (Fitzcharles & Yunus, 2011). Affected individuals make repeated use of the health care system and can require frequent hospitalizations (Cathey, 1986). Individuals younger than 40 years often experience worse symptoms and reduced quality of life (Jiao, Vincent, Cha, Luedtke, & Oh, 2014).

In 1990, the American College of Rheumatology (ACR) developed initial diagnostic criteria for fibromyalgia that included widespread pain for at least 3 months and tenderness on pressure (tender points) in diverse locations on the body (Wolfe et al., 1990). In 2010, the ACR updated the criteria with 19 potential tender points and 41 somatic symptoms but removed the inclusion of tender points in 2011 due to concerns over their usefulness in primary care examination (Wolfe & Hauser, 2011). Fitzcharles et al. (2013) developed the 2012 Canadian Guidelines for the Diagnosis and Management of Fibromyalgia Syndrome that also excluded the tender point count. In the absence of a definite biological marker or laboratory test, the diagnosis of fibromyalgia involves a clinical evaluation of a person’s self-report of symptoms (Dymon, 2015). This evaluation may require testing and exclusion of other conditions that mimic the symptoms of fibromyalgia (Madden & Sim, 2016). Treatment for fibromyalgia is debated in the medical literature. Combining pharmacotherapy and behavioral treatments is increasingly accepted and consensus exists over the benefits of using exercise in combination with cognitive behavioral or educational therapy (Kodner, 2015).

Stigmatization of Fibromyalgia

The absence of a diagnostic biological marker and lack of public awareness for the illness have been associated with stigmatization (Arnold et al., 2016). Diagnosed individuals worry about the perception of their condition as a psychiatric disorder and “feel stigmatized by the medical and nonmedical community alike, especially given that treatment centers on symptom relief rather than management of a disease process” (Dymon, 2015, p. 7). Living with fibromyalgia and coping with stigmatization can lead women to reconstruct their self-identity around the illness (Barker, 2002).

Due to these concerns, membership in a supportive community can assist individuals to better cope with the stigmatization of fibromyalgia. There has been an emergence of supportive online communities for individuals with various chronic illnesses. Studies of Facebook support groups for people living with HIV and diabetes reported that users validate each other’s illness stories, a process leading to improved well-being (Gaysynsky, Romansky-Poulin, & Arpadi, 2015; Zhang, He, & Sang, 2013). In a study of a website developed for fibromyalgia support, Barker (2008) found that individuals shared information on pain management and other day-to-day coping strategies. A recent study found that social support and normalization of fibromyalgia symptoms greatly aid individuals living with the illness (Cooper & Gilbert, 2017). These findings underline the value of online communities in allowing individuals to discuss illness-related concerns openly and with acceptance.

Theoretical Framework

The relationship between belonging to a community and health has been well investigated, particularly in relation to the concept of social capital. Social capital has been operationalized in numerous ways over the last 40 years. This study relies on Lynch and Kaplan’s (1997) definition of social capital as the “stock of investments, resources and networks that produce social cohesion, trust and a willingness to engage in community activities” (p. 307). Social capital develops from social relations that support individual or collective actions and the achievement of goals which, under the appropriate circumstances, contribute to the health and well-being of individuals (Coleman, 1988). Social relations are effective in creating social capital when members are engaged, trust one another, share common norms and a sense of identity, and feel an obligation to reciprocate. The level of trust is critical to the maintenance of these social relations as it shapes members’ attitudes toward each other and their willingness to share information (Inkpen & Tsang, 2005; Zhao, Ha, & Widdows, 2016).

At the analytical level, social capital consists of the subdimensions of structural and cognitive social capital, which are connected and mutually reinforcing (Islam, Merlo, Kawachi, Lindström, & Gerdtham, 2006). Structural social capital involves aspects of social structure such as normative roles and density of social networks which benefit all individuals in a community. Cognitive social capital consists of shared norms and language, as well as a perceived level of trust that facilitates reciprocity, interactions, and engagement in beneficial actions among individuals within a group (Inkpen & Tsang, 2005). Research suggests that both types of social capital can have a protective effect on the health of the general population and for individuals living with chronic illness in the community (Eriksson & Ng, 2015). Individuals who live in a trusted community can access information, social support, and resources needed to achieve desired health goals (Mohnen, Völker, Flap, Subramanian, & Groenewegen, 2015).

Lin (2001) argues online communities represent a type of social capital by virtue of the resources they offer to specific and diverse memberships. However, online communities operate differently than in-person community in delivering such resources. There is an absence of geographical proximity between members who are often anonymous to each other, and the support provided is limited because communication occurs mostly through short text and/or images (Loane, Webster, & D’Alessandro, 2015). Despite these concerns, online communities have been found to provide social support benefits that contribute to social capital, particularly for individuals with chronic illness who may be limited by disability or stigma when accessing support offline (Drentea & Moren-Cross, 2005).

There remains a lack of understanding of how online communities operate as forms of social capital in relation to health and illness. More information is needed on the way communities define themselves in virtual space, how they develop membership, and the resources and tools involved in this process. In addressing this lack of knowledge, this qualitative study aims to understand how an online community for people with fibromyalgia develops and is maintained on the social media application Instagram. Three questions guide the investigation: (a) How does the Instagram application facilitate the operation of an online community for individuals with fibromyalgia? (b) How do individuals communicate about their experiences of fibromyalgia in the application and what meanings do they convey in this practice? and (c) What social capital is created and maintained on Instagram for individuals with fibromyalgia?

Sample and Data Collection

Instagram is gaining popularity as a social media application of choice for individuals with chronic illness (Paige et al., 2017). Since its formation in 2010, Instagram has garnered 800 million users and was purchased by Facebook in 2012 (Balakrishnan, 2017). In a recent study by the Pew Research Center, 40% of those polled between the ages of 30 and 49 years use Instagram (Greenwood, Perrin, & Duggan, 2016). Furthermore, Instagram is more popular among female Internet users (38% vs. only 26% of men).

Following university ethics approval, purposive sampling was used to locate popular Instagram users posting on fibromyalgia. Popularity was determined as per the number of “likes” and comments users received and served as a proxy for user influence within the fibromyalgia Instagram community. Although users can post publicly or privately on Instagram, only public posts were selected for the study. Public posts appear on a stream when a specific hashtag is used. Hashtags (#) allow individuals to tag their photos with specific words other users can search. Once a user searches a hashtag, a stream of posts from any possible location will appear from anyone who has tagged that word. The stream highlights the most recently posted images with the hashtag, which for fibromyalgia, typically elicits up to 200,000 images posted over 3 to 4 days. Selected posts included a username, image, caption (written comment), likes and comments posted by other users, and hashtags.

Sampling began with generating a stream of posts with the hashtag #fibromyalgia. The sample was narrowed by selecting posts which had been up for a week but no longer than 6 months. One week is the period within which other users are likely to leave likes and comments while those posted for longer than 6 months receive few if any likes or comments (Carah & Shaul, 2016). Further narrowing of the sample was done with an Instagram feature that locates the nine most popular posts in a chosen hashtag stream. These procedures led to the identification of 15 Instagram users who consistently uploaded popular posts on fibromyalgia. The principal investigator (Berard) selected between two and four posts from each user according to popularity. The total sample of 50 posts was then analyzed using content analysis and semiotic methodology. In the analysis, usernames were replaced by an alphanumeric code to protect anonymity and confidentiality.

In addition, 12 Instagram users who frequently posted with the fibromyalgia hashtag were asked to complete an open-ended questionnaire. Recruitment of these participants involved the principal investigator creating an Instagram account identifying herself as a researcher from the University of Victoria. She then sent selected users an invitation to participate in the study. Recruitment took place on a first-come first-served basis. All participants signed a consent form which they returned by email. They were then sent the open-ended questions through the private message section in Instagram or by email. The questions asked users to discuss why they chose Instagram to share about fibromyalgia and with whom and how they interacted with others on the application. They were also asked about Instagram as a resource for illness management and the level of support they received from other users and how this compared with offline support. Screenshots were collected of the participants’ responses in the private Instagram message function, and emailed responses were saved in a password-protected computer file.

Data Analysis

Content analysis was used to thematically organize the content and frequency of Instagram posts and tabulate the number of likes and comments each post received (Ball & Smith, 1992). For example, the category “Pain Experience and Management” included posts on users’ experiences of pain, locations and visual representations of pain, and treatment recommendations.

Semiotic methodology was then applied with a subsample of 12 posts to gain an understanding of how users represent a largely invisible illness. The analysis considered images, captions, and referent elements such as the color, size, location, and positioning of images which can add meaning to posts. More specifically, this analysis examined the relation between the images and captions in Instagram (signifier) and the intended meanings they sought to convey (the signified) both as denotation (the most tangible meaning conveyed) and connotation or secondary meaning (Anderson, Dewhirst, & Ling, 2006; Danesi, 2004). The analysis first focused on the denotative features of each post to understand how the caption and the image worked together to produce explicit meanings and whether the authors targeted a specific audience, for example, people with a recent diagnosis of fibromyalgia or those having lived with the illness for years (Anderson et al., 2006). The analysis considered what each image primarily featured, for example, an individual’s face, a specific body part, or a medication bottle, what the author said about the image, as well as what Instagram functions the author used such as hashtags, image tools, and captions to enhance the meaning of their posts (Instagram, 2017).

The next step in the analysis focused on the connotative features of the posts, or their latent or implied meaning. Connotations derive from the use of signifiers with an ambiguous character, which viewers are likely to perceive in different ways depending on their experience with fibromyalgia. Posts with underlying meanings or connotative chains have more connotations, which make them potentially more interesting to viewers. Connotative chains of meaning can be “linked together by themes, plot-lines, characters, and settings suggested from the implicit storylines built into the surface presentations” (Danesi, 2002, p. 192). One example is the image of a salad with the hashtag “fibromyalgia.” While the user reports eating a healthy meal for lunch or supper, the use of the hashtag #fibromyalgia also implies that the daily reality of managing a chronic illness involves careful attention to one’s diet.

The analysis also considered how Instagram tools were used to modify the images and enhance their meaning. Users can crop an image and position it so that certain aspects of the image are centered or put to the side and apply an Instagram filter to change an image’s color, brightness, contrasts, or fix blemishes. For example, a color image may be posted in black and white to suggest the lack of energy that often accompanies fibromyalgia. The use of these editing tools is an important element of the analysis as they indicate what actions users take to give images deeper meaning pertaining to living with and managing fibromyalgia symptoms.

Finally, participants’ responses to the open-ended questionnaire were thematically analyzed to identify core themes. As Braun and Clarke (2006) describe, “a theme captures something important about the data in relation to the research question and represents some level of patterned response or meaning within the data set” (p. 82). The constant comparative method was used to verify the themes against the data and refine their dimensions and properties. With regard to reflexivity, field notes were kept during the analysis to keep track of the decisions made in interpreting the data. Thick rich description was used as much as possible to portray the findings and to underline the participants’ range and richness of experiences.

In the “Findings” section, we use the term Instagram users (or simply users) in reference to the 15 anonymous Instagram users whose public posts were analyzed using content analysis and semiotic methodology. We use the term participants in reference to users who consented to participate in the study and completed an open-ended questionnaire.

Tools and Practices of Interaction

This section describes how users’ interactions in the fibromyalgia Instagram community were structured by tools of the application. These tools include hashtags, likes, emojis, as well as images, videos, and captions. Each tool has unique features that allow users to customize their posts, respond to each other, and build a social networking profile in the community. As a search function, hashtags (#) allow users to locate posts in Instagram. With hash tagging, an Instagram user makes their post identifiable to an audience, with a large number of hashtags likely to attract more views. Hashtags were most often grouped at the bottom of a caption (Figure 1).

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Figure 1.

Hashtags outside of caption.

A few posts integrated hashtags in the caption (Figure 2). These posts with such captions did not generate as many views although their narrative quality likely appealed to some viewers.

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Figure 2.

Hashtags in caption.

Users indicated appreciating a post with a “like” by either double tapping on the image portion or tapping the heart button underneath the image. A count of likes appears underneath images for users to see. Likes function in this community as a form of recognition—the more likes a post has, the more popular it is. This inherently creates a popularity aspect that probably feeds into a user’s motivation when creating posts and sharing them on the platform. Although none of the participants said they posted to receive likes, those with the highest number of likes consistently posted new material and were developing a following online with blogs and YouTube channels, which would suggest that likes were at least somewhat important to them.

Likes also served a complex function in facilitating connection between users. When a user likes a post, their username appears on the platform creating a link to their profile. Therefore, the original poster can click on the names of those who liked their post and view their profiles. As one participant stated,

Of course, I am not able to say how many people see my posts and simply move past it. But posting does allow me to go back and see those that have liked and, in some cases, find other Instagram pages that are dedicated to the condition and also find other persons like myself that do have the condition.

In this way, likes facilitate the development of networks of users who interact by following each other’s posts and leaving comments. When two users exchange comments, they engage in a public conversation that can bring in other users at any time. Users also “tagged” each other by adding an “@” in front of their usernames on a post or comment, which notifies the tagged user. This in turn makes it possible for them to respond quickly to the post. Participants mentioned that they promptly commented on new users’ posts, particularly if they had been recently diagnosed or had pressing questions about the illness.

Another aspect of communication is the use of emojis, which are emoticon-type characters denoting feelings or state of mind that can add meaning to a word or phrase in a caption. Users used diverse emojis and routinely uploaded them in conversations—common emojis used in this community were hearts and faces depicting stress or anxiety.

Each Instagram user accumulates followers, the number of which is found at the top of their profile. In this study, users had between 23 and 9,000 followers. In conjunction with likes, a high follower count denotes the popularity of a user’s profile in the community. Participants remarked that followers were mostly individuals they met online. As one participant noted, “I have about 6,000 followers, and about 10 of them I know offline.” Followers thus constitute a large, albeit mostly anonymous, social network when compared with smaller face-to-face community-based networks.

Instagram is a visual platform where users communicate with images or videos—this is challenging for users as fibromyalgia symptoms typically lack apparent manifestation. The analysis identified key strategies users relied on to create visual representations of their symptoms. First, users commonly edited images with Instagram filters to suggest discomfort or pain and reinforced this message with the appropriate caption. Instagram has 23 filters with names like “Moon,” “Lark,” and “Nashville” (Instagram, 2017). Users have further options to rotate, crop or brighten an image, raise its contrast levels, and sharpen specific aspects. Users also accessed other applications online to edit their images or simply uploaded a computer-generated image found online. One example in Figure 3 shows a picture of a bruised back with enlarged blood vessels, with the caption: “If you could physically see the painful effects of fibromyalgia chronic pain, this is what you would see. Please share this and help raise awareness about invisible illnesses.”

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Figure 3.

Computer-generated Instagram image of fibromyalgia.

Users also posted unaltered images of body parts with a caption documenting their thoughts, feelings, or experiences. For example, one user posted a picture of a pair of legs on a sunny day at the beach. The caption read, “Fibromyalgia legs are tired!”

Uploaded images also had captions that detailed the impact of fibromyalgia in everyday life. For example, one participant explained how pain interfered with her work and daily routine:

When I am feeling sick or in bed I like to post to show people that I can’t always be at work or, on my time off, that this is what I have to do most of the time. It is nice to know other people are doing that as well and feel the same type of pain.

Acceptance, Reciprocity, and Community Roles

Participants described the fibromyalgia Instagram community as a space that offered acceptance, support, and guidance in ways rarely available offline. One participant noted, “The people online truly get what I’m going through whereas my family and friends offline don’t know what it feels like to have your body fail you so spectacularly.” Another recently diagnosed participant described the community as an important source of information to manage her illness:

I walked out of the doctor’s office more confused than ever and I felt like I had a doctor who didn’t care about helping me get better. I started looking online and eventually found how many people were posting this stuff on Instagram. After a while I got comfortable to ask my own questions. I know that a lot of the remedies or food ideas that I found helped my own symptoms so it definitely is a good place to go for information. I didn’t even think of getting a heating pad before I went on there and that changed my life by helping my pain!

Several participants spoke of wanting to convey the accepting nature of the community in their posts:

I choose to post images with the #fibromyalgia to heighten awareness of fibromyalgia. The images with the hashtag usually depict the way someone living and struggling with fibromyalgia can immediately relate to without being judged as well as being understood!

Other participants viewed the community as a safe place to post on any aspect of fibromyalgia, whether it be the unpredictability of symptoms or how the illness impacts social life, as illustrated by this caption:

I’ve had to step completely back countless times and do nothing . . . This isn’t natural for me to rest and I’m constantly pushing myself to do something. You have to choose wisely and prioritize what you “need” to do and what can wait. Socially it’s difficult because you feel that you are always cancelling, changing [plans] or avoiding people.

These participants contrasted the community’s acceptance to the dismissive attitude of relatives and friends, as demonstrated in this quote:

The support I have offline is skeptical and scattered. Most people offline look at me and question me in disbelief. The ones who believe my illness and believe my pain are the ones I see the most. My immediate household, which is my husband & my 2 sons who are 11 & 4. Some selected coworkers, that I work closely with and my sisters and parents!

Participants also valued how posts received immediate responses from other users, in contrast to the sporadic support they received offline. Such responses were undoubtedly facilitated by users’ access to a smartphone or personal computer that allowed them to connect with the community at any time and in diverse locations, for example, at home, resting in bed, or waiting at a doctor’s office.

The analysis of the posts revealed that participants with a longer history of illness played a key role in supporting new users who struggled to understand the nature of their symptoms, as exemplified by these two captions, “I have been experiencing symptoms just like this, plus chills and heat flashes. Do you think I could have fibro?” and “Oh my god! This is exactly how I feel. Doctors couldn’t really tell me why; do you think it is fibro?” Such participants communicated with new users by providing a detailed description of their own symptoms. For example, one user posted a cartoon of Snoopy looking ill and a list of several symptoms: “My skin itches,” “My body throbs,” and “My brain won’t wake up.” This post led to this exchange:

S: Oh my gosh! I have fainted many times and once in the bathroom too! I don’t know why but I’ve always thought that it’s because of fibromyalgia. Doctors really couldn’t tell why . . . do you think it’s fibro?

L: I have POTS [postural orthostatic tachycardia syndrome] and possibly Addison’s—but I don’t medicate. I often pass out standing up from a sitting position, BP drops a lot. I have cool showers−hot water not good−and I have a shower chair. I recognize when it’s going to happen and get on the floor. Could be worth you getting your doctor to check these out.

S: Wow! Good to know, I’ll ask my doctor next time I see her. Thanks for the advice.

Participants spoke of the mentorship role users with a longer history of fibromyalgia took on. Nicknamed “fibro warriors,” these users responded quickly with supportive comments and had the highest number of followers, likes, and comments. They also served as the first point of contact for many new Instagram users. Participants recalled how their interactions as new users with mentors brought them to a stronger place both mentally and emotionally. As this participant explains,

Connecting with fibro warriors is a reminder that other people out there live this same life every day and struggle the same way I do. We really are in a battle and it’s nice to know you aren’t alone and that other warriors are fighting for recognition as well.

The analysis also identified users who played similarly helpful roles, albeit in subtler ways. Known as “motivators,” a few users distinguished themselves by uploading inspirational posts with multiple emojis, humorous images, and funny stories about their lives with fibromyalgia. Other users became “fibro friends” by sharing similar concerns like a frustrating encounter with a doctor, symptom flare-ups, or the effect of lifestyle changes. “Fibro friends” left the most likes and comments on posts of all users in the sample. A final role is that of “follower” which designates users who rarely post and keep a low profile. They tend to follow “fibro warriors” or “motivators” by reading their posts and leaving likes, but otherwise limit participation in the community.

Overall, the analysis of participants’ responses and user posts suggest that this fibromyalgia Instagram community operates as a responsive virtual space characterized by norms of acceptance and reciprocity. As one participant remarked,

Instagram is amazing for bringing people together who understand one another and can share treatments and ideas. I’m definitely a more positive person for having used Instagram for this reason. I know I’m not alone and isn’t that the most important part of being alive?

Fibromyalgia Narratives as Resource

This section outlines how the narratives of users with a long history of fibromyalgia served as a resource to learn about the illness and its consequences. Analysis of the 50 posts and 12 sets of questionnaire responses revealed four themes: (a) impact of fibromyalgia, (b) pain management, (c) faces of fibromyalgia, and (d) awareness and education.

The category impact of fibromyalgia includes 10 posts (20%) about the daily and longer term impact of fibromyalgia symptoms. The number of likes on the posts ranged from six to 213 with between zero and 43 comments. The posts describe how fibromyalgia symptoms can stabilize or worsen over periods of days to weeks and even months. Users describe symptom flare-ups that last anywhere from a day to multiple months which are sufficiently severe to alter daily routines and, in some cases, force users to quit work or schooling. Users identified several factors that trigger flare-ups such as bad weather (cold, rain, snow, or too much heat) or the stress of dealing with an unsupportive care provider or filling out a disability claim. A few users mentioned pushing themselves too hard on a given day as a trigger.

In describing fibromyalgia symptoms, users often displayed images of the weather with rain, snow, or a gloomy sky designating painful symptoms while images of sunlight represented positivity, inspiration, and having a good day. One post, for example, had an image of a dark, stormy cloud with a small strip of sunny sky accompanied with the following caption:

Do you see the light? Always remember the storm will end and you’ll see the sun again. Yesterday was “stormy” for me. Pain was high and there were no answers. Today I can see the sun between the clouds. I still have pain, but it is a lot more bearable than yesterday. They will get specific tests done today and hopefully have a diagnosis tomorrow.

This post indicates a user’s appreciation of minor improvements and hope that a diagnosis will provide greater understanding of her symptoms.

Several posts underlined users’ frustration with the health care system. For example, a user with more than 5,000 followers posted an image of a snowy road seen from a car windshield with the hashtags “spoonie,” “chronicillness,” “chronicpain,” “fibromyalgia,” “arthritis,” “invisibleillness,” “blizzard2016,” and “heartbroken.” The caption described how on this blizzardy day, the user received a call confirming denial of an insurance claim to cover missed work because of a flare-up. Her insurer denied the claim because they considered her fibromyalgia to be a preexisting condition as it was diagnosed prior to her current employment. This post received 213 likes and 42 supportive comments with users noting similar issues: “Oh my gosh. My worst fear is that one day my disability will call and end my coverage before I’m well enough to work. So sorry to hear you’re going through this.” In a reply, the user said, “It sucks you all understand this situation bc [because] we all go through it. Ugh. Thank you so much for your kind messages and support. I’m so thankful for you guys!”

Nineteen posts (38%) focused on the experience and management of pain with likes ranging from four to 331 and comments ranging between zero and 42. Most posts identified a body part in captions explaining the nature and intensity of the pain in that site. For example, one post showed an individual’s hand with a compression glove on it with a caption stating, “My hands are so swollen! And painful. My fingers look like sausages. A nap is needed.” Several posts mentioned pharmaceutical or nonmedical treatment to relieve pain. For example, one post had a hot water bottle on top of aching legs while others had pictures of bottles of pain medication. Comments on these posts were supportive and offered suggestions for managing pain. As one participant noted, “It is nice to know other people are doing that as well and feel the same type of pain.” Participants spoke of posting on pain to obtain support for a symptom difficult to discuss offline, as explained in this quote:

I like to post about how I actually feel like with my pain and symptoms because I don’t think I really show that often. Like my joints might be really hurting but if I don’t tell anyone that, then they don’t know. So sometimes I post about it instead and take a picture of my wrist or something.

One participant similarly commented, “Unless the fibro monster lives within you, there is no way to understand, period. Instagram has linked me with other people with chronic pain, people who know the life and the exhausting reality.” With posts archived on Instagram, users were able to create a record of their pain episodes accessible to all. Recently diagnosed individuals thus were able to learn from these posts in ways not possible offline.

In 15 posts (30%), users included a selfie to highlight an emotion or a state of mind about their symptoms. Likes in this category ranged from one to 53 with between zero and 10 comments. Nine of the 15 posts had users frowning or crying to highlight frustration with symptoms as illustrated in these captions, “I feel unwell” and “Putting on a brave face but everything hurts so much.” A few posts expanded on the impact of symptoms, as exemplified by this post:

Pain! There is only so much a person can take before it starts to wear them down. I have lost my career path as a Personal Trainer and more and more I feel like I am losing myself. Lord knows I could use some relief.

These posts featured muted or gray-based tones to depict a low mood in that moment. A few posts had a face hiding in a blanket or bedding with users looking away from the camera, possibly to convey vulnerability. One post had a black and white computer-generated image of a crying woman pulling away the mask of a smiling face. The caption read,

Having a really tough time. Pain has been so bad and I am barely sleeping because of it. I tried to explain to a colleague about it all and she said, “I guess we just have to live with these things.” People just don’t understand and appreciate how hard getting through each day is with a debilitating chronic illness. But as usual, I kept my brave public face on as I will do all day at work tomorrow. I thought this would get easier but it just gets worse.

This post highlights the challenges fibromyalgia users face if they disclose their symptoms offline, which contrasts to the sympathetic responses they receive on Instagram.

Two posts had users smiling to suggest a positive attitude in managing pain. On one post, the user faced the camera with light from a window shining on her face. The accompanying caption said, “Everyday holds great potential. ASK, RECEIVE, BELIEVE. Living strong and Living well—despite my Fibro—it does not define me!” These posts garnered encouraging comments such as “You’re amazing!” or “It is so great to see someone living with this illness and still smiling!”

In six posts (12%), users raised awareness about fibromyalgia. Likes ranged from 10 to 594 with zero to 13 comments. As one participant said, “By posting on Instagram, I get to connect and receive encouragement. I also think by sharing my posts, I am more likely to create awareness on fibromyalgia.” Another participant enthusiastically explained her role as an advocate for fibromyalgia:

I was so unaware of all the different invisible illnesses before I began engaging on Instagram and now I am a champion (or am trying to be!) for all of the different illnesses. Fibromyalgia affects people of all ages, races, and genders and there definitely needs to be more awareness for it. There are over 200 symptoms and each one is more horrible than the last and people have no idea what it entails.

One post with 594 likes was from a professional sports player whose sister has fibromyalgia. The post showed them being interviewed about a charity event for fibromyalgia research. Another post had a user’s palm with the words, “I have fibromyalgia. If my pain was visible, my whole body would be black and blue.” Inspired by the amyotrophic lateral sclerosis (ALS) Ice Bucket challenge, the user added the hashtag #fibromyalgiapalmchallenge to encourage others to post a picture of their palm with information on fibromyalgia. A search of this hashtag brought 200 posts from other users with their palm displaying personal messages about their illness.

A Sense of Community

The analysis of the posts and questionnaire responses suggests several ways in which a sense of community developed in this group of fibromyalgia Instagram users. First, users access this community through the use of the hashtag #fibromyalgia but also combine different hashtags to search for posts on specific aspects of the illness such as diet or managing pain. Second, users often communicate about specific, and sometimes technical, aspects of managing fibromyalgia symptoms. This kind of communication requires personal experience and at least some level of knowledge about fibromyalgia. Users also rely on emojis to give nuanced meaning to their posts.

Third, users share a normative understanding of how to craft comments to leave on Instagram posts. In our sample of 50 posts, we found no instances of users leaving negative or critical comments. Rather, users always respond encouragingly and supportively to each others’ posts. We speculate that users are keenly aware of the struggles people with fibromyalgia face offline when their symptoms and concerns are dismissed by health care providers, family, and/or friends. Participants also have the ability to block users who leave negative feedback and delete any such comments. This undoubtedly lessens the likelihood of having individuals who are critical remain in the community although this is something we could not determine in this study.

Fourth, the willingness of some users to share deeply personal narratives on living with fibromyalgia also contributed to a sense of community in this group. These personal narratives, mostly from users with a longer history of illness, provide recently diagnosed users with information and encouragement that many found helpful in managing their own fibromyalgia symptoms. This kind of firsthand knowledge is difficult to obtain offline as newly diagnosed individuals may not know others with fibromyalgia or be unable to attend support groups because of pain, fatigue, or the fear of stigma, which cannot be understated.

A final point concerns how this fibromyalgia Instagram community appears to share a common purpose. This community is not a site of activism, but rather offers support for individuals to manage their illness on a day-to-day basis. Users spoke critically of the services they received from some health care providers. However, apart from improving communication with their personal providers, ways of remedying these issues were never discussed. One potential explanation lies within the ubiquitous nature of the Internet. Instagram users are a global community which means strategies to improve experiences within various health care systems are difficult to create and implement. Also, Instagram fibromyalgia users likely want a place where they feel less isolated and which readily offers useful illness-management information. This purpose compares to that of other illness-oriented Instagram communities—the focus is on personalized support and encouragement rather than health activism.

Implications for Practice and Directions for Future Research

Arnold et al. (2016) argue for the need to standardize clinical practice for fibromyalgia patients, as well as increase social awareness of the illness and improve access to educational resources. These lacunae might contribute to a growing reliance on social media among people with fibromyalgia, particularly those lacking access to face-to-face support and/or fearing social marginalization because of their illness (Loane et al., 2015). As this study’s results show, Instagram users learn from each other’s narratives and appreciate the mentorship they receive from users with a longer history of illness as well as the unconditional acceptance of the community. Organizations supporting those living with fibromyalgia should consider developing a social media presence to help users understand details of their illness, make informed decisions on managing symptoms, and interact effectively with health care providers (Paige et al., 2017). Such initiatives could result in improved well-being, quality of life, and health outcomes. As importantly, growing social media initiatives might offer an opportunity for those living with fibromyalgia to advocate for improvements in health care services, clinical practices, and public outreach. As importantly, such interactions might offer an opportunity for social media users with fibromyalgia to advocate for improvements in health care services and clinical practice and continued efforts to diffuse stigma and increase public awareness.

Future research needs to consider investigating fibromyalgia communities in other Internet applications. Possible applications include Pinterest, which several participants identified as a valid source of information on fibromyalgia, and the Apple App store that has several fibromyalgia support applications. It would be useful to analyze how support communities operate in these applications in comparison with Instagram.