This paper discusses the emotional and medical benefits of endometriosis online support groups on Facebook. Endometriosis is a largely misunderstood disease affecting the uterus and surrounding organs, it can lead to chronic pain, infertility and other dangerous health complications. Due to the gendered nature of endometriosis, the battles for patients extend beyond treatment and education. Endo support groups can prepare users with the necessary medical knowledge to negotiate with their doctors for treatments, critique their effectiveness, request specific procedures and medication, and manage their symptoms with more confidence. Facebook medical support communities offer the chance to share experiences with others who genuinely understand the condition, having a profoundly positive impact on a sense of belonging and emotional wellbeing. This paper offers a counter perspective about social media’s influence on medical misinformation, adding nuance to the argument and highlighting the benefits of medical communities on social media.  In this paper, I argue that endometriosis online support groups improve patients’ lives, and disease management, and have enabled empowering communities of knowledge-sharing, emotional support and political resistance.

#Gender #Equality #Endometriosis #Knowledge #Power

The internet and social media have profoundly changed the way people connect with each other and form communities, and it has paved the way for entirely new forms of supportive relationships. The internet has de-spatialised communities and allowed vulnerable members of society to build relationships without the barriers of transport and mobility (Delanty, 2018). People can connect with others based on more personal and significant reasons other than just proximity. Using the internet to connect with peer support and medical information via social media has become very popular (Shoebotham & Coulson, 2016). Hundreds of Facebook support groups have been formed to offer peer support through illness and disease, sharing their stories, knowledge, and emotional support within their health communities (Wilson, Mogan & Kaur, 2020). Looking specifically at support groups for endometriosis patients through academic research, and through personal engagement, I argue that through the internet, social media has substantially improved the lives of these patients. This is done through knowledge-sharing that leads to better disease management, feelings of empowerment and creating a strong community of social support and political resistance.

Background

Endometriosis is a gynaecological disease, where tissue similar to the uterine lining grows outside of the uterus, often infiltrating surrounding organs. This can cause debilitating pain, infertility, dangerous cysts, and a variety of other health complications, and is estimated to affect between 2% to 17% of women, girls, and gender diverse individuals worldwide (Cole, Grogan & Turley, 2021; Shoebotham & Coulson, 2016).  Endometriosis or “endo” remains a widely misunderstood disease and is profoundly understudied within the medical field (Young, Fisher & Kirkman, 2020). Gendered stereotypes about women’s bodies and their intellectual credibility lead to doctors often dismissing endo symptoms as hysteria, or simply a low threshold for period pain (p. 35). It is often accepted that women are ‘meant’ to live in pain or are stereotyped as overemotional and fragile (Heise et al., 2019). Young et al. (2020) defines endo patients seeking medical assistance as entering a “minefield of knowledge and power struggles between [patients] and doctors” (p. 24). Receiving a diagnosis of Endometriosis can be delayed by four to nine years because of these factors, allowing the condition to progress to debilitating levels (Young, Fisher & Krikman, 2020). Not only can it be difficult to discuss endo symptoms with a medical professional, but it can also be a challenge in other areas of patients’ social lives. Endo sufferers disproportionately experience social isolation, depression and anxiety and overall poorer quality of life (Shoebotham & Coulson, 2016). The use of online support groups has been suggested as a goldmine of information for medical researchers, and healthcare providers, but more importantly for the patients (Wilson, Mogan & Kaur, 2020; Whelan, 2007). Before the internet endo communities took to medical libraries and had to search alone, books about endo were published for lay audiences but were difficult to find (Whelan, 2007). Connecting with other people with endometriosis provides immense benefits for the individual sufferers, thus the internet becomes their key resource (Shoebotham & Coulson, 2016).

Building Connections and Reducing Isolation

Online support groups among endo patients have proven to reduce feelings of isolation and improve patients’ acceptance of their diagnosis through feelings of solidarity and belonging (Shoebotham & Coulson, 2016).  Endo sufferers have widely reported that the disease is extremely isolating. This is due to the cultural perspectives around menstruation being a deeply private topic (Cole, Grogan & Turley, 2021; Laws, 1992), and due to medical professionals systematically dismissing their symptoms (Young, Fisher & Kirkman, 2020).   Patients can have issues discussing their illness and symptoms with friends and family, given the private nature, exacerbated by the general population’s lack of understanding of the disease (Shoebotham & Coulson, 2016). Endo support groups on Facebook are generally private, and people are encouraged to share their experiences and knowledge away from the scrutiny of public life (Shoebotham & Coulson, 2016). Endo patients often exchange emotional support on these platforms and send empowering messages to their peers (Mo & Coulson, 2014; Shoebotham & Coulson, 2016). Whelan (2007) noted that through online support groups, endo communities form a collective identity through their diagnosis and support for one another. This creates a strong sense of belonging, empowerment, and community, which is often used for moral support and collective acts of political resistance (Whelan, 2007). Due to endometriosis being a physically limiting disease, the ability to connect online can mitigate the accessibility issues of the condition, and foster an environment of despatialised knowledge sharing.

Knowledge Sharing

Endometriosis is a disease barely understood, medical information contradicts itself, and ‘best practice’ is still widely debated (Young, Fisher & Kirkman, 2020; Wilson, Mogan & Kaur, 2020). Furthermore, it is common for doctors to provide little or no information to patients about managing their condition, the treatments available, and which symptoms to expect (Whelan, 2007). Endo is an illness that can present differently in each patient, which means that treatments cannot be a one size fits all solution, and these women are highlighting the importance of experiential and embodied knowledge in their treatments (Whelan, 2007).  These Facebook support groups take part in sharing drug side effects and their effectiveness in reducing pain, surgery procedures, and healing processes, and recommend specialists. They even go as far as sharing information on where to find loose-fitting pants to accommodate for ‘endo belly’ and information on managing symptoms with diet, TENs machines, and exercises. Endo patients gain a wide variety of medical knowledge from these online support platforms and gain the necessary vocabulary to negotiate with their doctors for better treatment and care. These patients have expressed that for endo sufferers’ knowledge is power, as someone armed with knowledge is better equipped to evaluate their doctor’s integrity (Whelan, 2007).  The sharing of medical terms and language empowers patients to request, or even demand specific treatments, surgeries and scans to diagnose or treat the illness. Because of this, endo patients are improving their disease management and living better lives (Mo & Coulson, 2014). Endometriosis online support groups are creating online libraries of collective wisdom, empowering each other to learn more and to fight for fair medical practice.

Resistance

The benefits for individuals taking part in these online support groups are profound, and these benefit all participants from lurkers to influencers, meaning those who simply observe, and those who actively contribute (van Uden-Kraan et al., 2008). Patients report gaining feelings of hope, empowerment, and having overcome the loneliness of the condition (Shoebotham & Coulson, 2016). Gaining a platform for communication with other people with the same medical condition is said to bring comfort and enhancement of social well-being that other social supports cannot (Wilson, Mogan & Kaur, 2020; Wentzer & Bygholm, 2012; Mo & Coulson, 2014). Most medical support communities are formed on Facebook due to its “asynchronous discussion forum format”, and users can create new discussions, and start a tree-like comment format through their responses (Shoebotham & Coulson, 2016, p.2). These groups follow strict rules when posting and commenting on others’ posts, ensuring a supportive community, and as an attempt to minimise risks of misinformation. The online endo communities are de-spatialised, but many are formed with locale in mind. For example, ‘Endo WArriors’, a group I have been a part of for many years, is focused on sharing endo information and support, but also specific information about Western Australia. They take part in sharing good quality clinics, specialists, and places within WA where endo sufferers can seek effective treatments (Shoebotham & Coulson 2016). This group often hosts forums with endo researchers and offers a platform for researchers to connect with patients for clinical trials and studies. The location aspect of endo communities also targets local governments with campaigns for better health care and a reduced cost of treatments and medication (Whelan, 2007). Because of the inherently gendered and cultural nature of patients’ experiences of endometriosis, the formation of a knowledge-sharing community is a formation of an embodied health movement. These groups manage to form a collective identity through shared experiences of pain and oppression, and a shared goal. With their group’s focus mainly on empowering individual patients to seek better care and treatments from medical professionals, this act in itself is an act of resistance and agency (Whelan, 2007).

Concerns

Despite these widely discussed benefits of medical support groups on Facebook, there remain common concerns such as the likelihood of spreading misinformation, and fostering disempowerment in its users (Mo & Coulson, 2014; Shoebotham & Coulson, 2016). In the sphere of endo support groups, there is a strong emphasis on ‘self-education’ and a culture of knowledge sharing which could be concerning for medical professionals. A part of Whelan’s (2007) study focused on these patients’ methods of gathering information, they noted that most of the shared information is gained through sharing medical research journals, information gained from experience and medical professionals. These patients also reported remaining sceptical of amateur information and made the habit of fact-checking questionable claims. Furthermore, in contrast to the lack of useful information patients gain from medical professionals, misinformation seems to be a minor risk compared to the extensive benefits gained from support groups’ collective wisdom. Shoebotham and Coulson (2016) suggest tackling misinformation by deploying medical professionals to moderate platforms. However, the issue with this is the endo patients’ strong distrust of medical professionals and the sheer lack of knowledge among professionals about endo, thus the approach would be counterintuitive for endo groups.

Another reported downside to these peer-to-peer support groups is the tendency of users to share mostly negative experiences (Mo & Coulson, 2014). This can have a disempowering effect on readers because it could paint a bleak picture of living with the disease. Contrary to this issue, the sharing of positive experiences can also have a disempowering effect on readers. Shoebotham and Coulson (2016) claim that sharing positive fertility stories can cause distress among readers, especially if they have failed to conceive. Most users of these platforms take care to include trigger warnings when discussing something potentially distressing. Respondents to Whelan’s (2007) study also reported that arguments can take place about which treatments are better, and these platforms can sometimes foster a competitive culture of ‘who has it worse’. But most participants admitted to “enjoying the drama”. Overall, the negative impacts that online medical support groups are easily overshadowed by the positive impacts on an individual’s physical and mental wellbeing. And admittedly, the negatives of support groups are comparatively minor to the damage that the medical field’s dismissal of women’s physical pain and mental soundness has and continues to do. A final concern for endo support groups, one of which is likely the most worrisome, is their tendency to foster further distrust in the medical field. Whelan (2007) reported a groupish dissent among audience members at an endometriosis forum while an endo expert was speaking, where participants were closed off to new information from this professional.

Conclusion

The internet and social media have dramatically changed the social landscape, it has de-spatialised the formation of communities and allowed for new connections to be made. The use of social media in seeking peer support and sharing medical knowledge has grown rapidly (Shoebotham & Coulson, 2016). Endometriosis is a disease that affects people with uterine reproductive systems, therefore the attitudes of the medical professionals are historically entrenched in gender stereotypes leading to the dismissal of pain and the neglect of a progressive and debilitating disease (Young, Fisher & Kirkman, 2020). Exploring the endometriosis online support groups, I analysed the benefits of these online communities on individuals’ physical and mental wellbeing and personal agency. These groups equip patients with the medical knowledge necessary to critique the effectiveness of their doctors and treatments, demand specific procedures, and better manage their symptoms. Patients can share experiences and support with others who truly understand their conditions, and due to the isolating nature of endometriosis, this has a profoundly positive impact on their emotional wellbeing and sense of belonging. Concerns about misinformation, the distress caused by sharing negative stories, and the possibility of in-fighting are overshadowed by the remarkable emotional, and tangible differences they make in peoples’ lives. Endometriosis online support groups have significantly improved patients’ lives and their disease management, they have created strong communities of knowledge-sharing, empowerment, social support, and political resistance. 

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