“They just sit in there jabbering about how they feel”:Listening to men’s illness stories outside online communities.

“They just sit in there jabbering about how they feel”: Listening to men’s illness stories outside online communities.<br/>1. Introduction <br/>“I’m not exactly sure what it is. But often, I think it can turn into a kind of navel-gazing. Or no, not navel-gazing, self-pity. I find it hard to find communities that really give me something constructive in the long run.” N63<br/><br/>This quote is from an interview with a man living with chronic pain and limited functionality following a hip surgery that went wrong. Four years have passed, and he has experienced constant pain and severely restricted mobility ever since. He lives alone and chooses not to participate in online communities with others who are chronically ill.<br/>Sharing lived experiences of illness has long been recognized as central to making sense of suffering. Yet, not all individuals with long-term illness engage in online sharing practices. In two of the largest Danish communities on Instagram and Facebook, participants are almost exclusively women. In the Facebook group Chronic Pain Patients (Da: Kroniske Smertepatienter), with approximately 4,000 members, only 14% are men. Among roughly 10,000 followers of the Instagram profile Chronic Influencers (Da: Kroniske Influencers), just 6% are men (Stage et al., 2024).<br/>According to the National Health Profile (2021), 36.2% of all Danes aged 16 and above live with one or more chronic conditions, amounting to approximately 1.5 million people with ongoing medical, care, and support needs (Sundhedsstyrelsen, 2022). The gender distribution is 31.3% of women and 25.5% of men over age 16 (Sundhedsstyrelsen, 2022). With a healthcare system under pressure, some citizens living with chronic conditions turn to peer-driven online communities for information, care, and mutual support (Eysenbach, 2008; Poisti et al., 2014; Karlsson et al., 2024; Ledderer et al., 2024). This shift also redistributes care responsibility, as caring for oneself becomes entangled with caring for others (Tucker &amp; Goodings, 2017). In these communities, citizens living with chronic illness participate in, produce, and negotiate illness, care and knowledge; in other words, they engage in ongoing patient work (Stage et al., 2024), partly to compensate for gaps in institutional care.<br/>Though these online spaces share a common focus – namely, providing support for those living with chronic conditions – experiences, understandings, and negotiations of illness vary across communities, producing different forms of peer-patienthood. Some communities center illness as a core identity; putting illness in the foreground of their lives, while others situate it more peripherally, placing illness in the background (Karlsson et al., 2025). Still, very few men participate in these spaces.<br/>Based on this background, this paper asks:<br/>Why do men with chronic illness not share their illness stories in online communities?<br/>To answer this question, this paper draws on interviews with 17 men living with physically limiting chronic conditions and applies theories of masculinities (Connell &amp; Messerschmidt, 2007; Bridges &amp; Pascoe, 2014) combined with Arthur Frank’s concepts of the monadic and dyadic body (Frank, 1995).<br/>2. Methods<br/>Participants were recruited through the Danish online forum FAKS – The Association for Chronic Pain Sufferers and Their Relatives (Da: Foreningen af Kroniske Smerteramte og Pårørende) as part of a broader project on men’s absence from peer-led social media groups for people with chronic pain or illness. After securing permission from forum administrators, I posted a study description emphasizing: (1) I sought men with a range of chronic illnesses, regardless of whether they were active online in designated illness communities; (2) all data would be fully anonymized and handled according to GDPR regulations; (3) all files would be deleted upon study completion. Participants were informed that interviews would last about an hour, and location could be freely chosen. Twenty-three men responded. Three withdrew for personal reasons; one experienced a severe relapse; one failed to respond to scheduling emails; one missed his appointment and did not respond. Ultimately, 17 interviews were conducted, each lasting approximately one hour. Participants ranged from 27 to 63 years old, living across Denmark. Living arrangements included living alone (3), with a partner (12), and temporarily with parents due to care needs (2). Employment statuses were: flex-job holders or applicants (5), on sick leave (1), pre-pensioners (5), full-time employed (1), part-time employed (4), and self-employed (1). Eight held higher-education degrees; nine held mid-level education. To ensure anonymity, these variables are not cross-tabulated but presented to outline the sample. A trained student assistant transcribed the interviews. I conducted thematic coding following a structured codebook approach (DeCuir-Gunby et al., 2011) and line-by-line analysis (Charmaz, 2006; Holton, 2007). Five central themes emerged: social-media communities, illness storytelling, masculinities, relationships, and self-care strategies. This paper focuses on illness storytelling, relationships, and masculinities. Ethical considerations guided the entire process. Informed consent was obtained, with the option to withdraw at any time. Participants are cited by a letter (A–Q) and their age. Minimizing any physical or psychological burden was paramount (franzke et al., 2020). Accordingly, each participant chose interview formats suited to their needs: four interviews took place in homes, five by telephone, and eight via Zoom.<br/>3. Theoretical framework<br/>This paper applies theories of masculinity (Connell, 1995; Connell &amp; Messerschmidt, 2005; Bridges &amp; Pascoe, 2014) and draws on Arthur Frank’s (1995) concepts of the monadic and dyadic body, alongside discussions of vulnerability and care (Brown, 2015). Frank (1995) argues that ill individuals need to tell their stories to create new maps and understandings of their place in the world. Yet, not all stories are voiced or heard equally. Frank’s concepts offer a way to understand how men navigate illness communication. The monadic body responds to illness by withdrawing from social support, treating illness as a private matter to be handled individually. By contrast, the dyadic body reaches out to others, inviting support and care through shared narratives. The dyadic body does not guarantee a speedy recovery; rather, it reflects a relational orientation to illness experience. In this study, the concept of the monadic body helps describe many of the men’s experiences. However, these categories are not fixed along gender lines. Rather, masculinities and illness practices are fluid and negotiated. This fluidity allows some movement between monadic and dyadic orientations, but for several of my participants, strongly held masculine norms make such transitions difficult.<br/>Theories of masculinity (Connell &amp; Messerschmidt, 2005) help explain how cultural norms equating masculinity with control, autonomy, and emotional restraint shape men’s reluctance to share illness narratives. At the same time, hybrid forms of masculinity may offer pathways to reconfiguring these norms (Bridges &amp; Pascoe, 2014). Thus, this paper examines how masculine beliefs influence men’s engagement or non-engagement with online peer-support spaces. The argument is that men’s reluctance to share illness narratives reflects not simply personal preference but an ongoing negotiation between masculinity and vulnerability.<br/>4. Analysis<br/>The analysis identifies three primary reasons why men refrain from sharing illness experiences online:<br/>(1) Masculine beliefs clash with emotional openness;<br/>(2) Illness stories are not viewed as “real” knowledge;<br/>(3) There is no clear purpose for participation.<br/>Additionally, the interview situation itself became such a clear purpose, i.e. contributing to research, and thus occasionally provided a space for men to articulate illness stories they otherwise withheld.<br/>4.1 Masculine beliefs clash with emotional openness<br/>Illness communication in peer groups often emphasizes emotional openness, vulnerability, and mutual support—qualities that some men perceive as conflicting with their masculine self-understandings. The monadic body handles illness privately and avoids burdening others. As Q29 explains: “If someone notices… then I’ll say ‘yeah, it’s because my back has been absolutely awful’. It’s not something I bring up myself very often.” (Q29). When men do join online groups, they often remain passive readers. As J34 describes:<br/><br/>“That one time where I introduced myself – said my name, how long I’ve had the pain, and what has been done so far. That’s about the extent of the active interaction I’ve had in the group. Otherwise, I’m more of a passive member, just reading along.”<br/>Some interviewees perceive online peer groups as overly emotional or feminized spaces. A 34-year-old man with fibromyalgia reflects:<br/>“It’s a bit of a feminine kind of community, because it all ends up being about ‘how am I feeling today,’ and ‘this is just so hard,’ and ‘sending love’ with a heart emoji. I’d rather understand what this is about. That’s my motivation for taking part, more than just sitting around talking about it.”(B34)<br/>However, some men shift toward a dyadic position when it involves sharing knowledge to help others. One participant explains: “I would feel it was my duty to share it. It would also be strange to get well, as if I’d found a miracle cure, and then just keep it completely to myself. That would be selfish, right?” (B34). In these instances, the shift from monadic to dyadic body occurs not through emotional sharing, but through knowledge-sharing aligned with provider and protector roles often associated with traditional masculinity (Connell, 1995; Connell