The social news website Reddit, where individuals can engage with each other, share experiences, and exchange information, provides a potentially rich source of data for research to understand experiences of specific patient groups. This patient-oriented qualitative study applied a descriptive thematic approach to analyze threads from Reddit with the aim of understanding the experiences of individuals with RA regarding their mental health. Four themes were constructed from the analysis and were characterized as ‘navigating the management of RA’, ‘experiencing impact on relationships and social isolation’, ‘experiencing loss’, and ‘experiencing emotional struggles.’ These findings were interpreted further to develop a thematic framework that explains relationships among the themes and categories in an effort to enhance our understanding of how mental health-related problems arise and present in individuals with RA. Findings of our study emphasize the close relationship between aspects of RA, specifically symptoms (e.g., pain and fatigue) and disease management (e.g., medications and health resources), and the downstream negative effects on mental health. Indeed, the symptoms of RA and the fact it presents as an invisible illness can lead to a range of continuous losses (e.g., work disability, worries over family planning) and strain relationships, especially when there is a perceived lack of understanding from others as well as personal guilt, which all have substantial implications for one’s mental health. By garnering attention to these phenomena, healthcare providers, families, and communities can recognize and identify opportunities to improve the mental health of patients with RA.
Our particular study was motivated by growing recognition of the importance of psychological impacts of RA, in addition to its physical impacts. Arguably more studied is associated mental health disorders including depression and anxiety, which systematic reviews have shown to be a substantial comorbidity in RA with reported prevalence estimates as high as 39% (8) and 45% (9), respectively. We were particularly interested in the concept of mental health which is a fundamental aspect of everyone’s health and is described as someone’s overall mental well-being, as opposed to the presence or absence of a specific mental illness such as depression (10, 11). Qualitative studies have not explicitly explored mental health in individuals with RA, nonetheless, some of these have described phenomena similar to those identified in our study. In particular, Toye et al. (31) in 2019 conducted a meta-ethnography of nine qualitative syntheses in RA to characterize experiences of living with RA, with one of the themes, “RA is in control of my body”, relaying the pain, fatigue, unpredictability of symptoms, and the invisibility of this disease. In addition, our theme of experiencing loss is paralleled in the aforementioned meta-ethnography as well as a phenomenological study on lived experiences with RA in the US by Iaquinta et al. (32) in 2004 that perceptively characterized a process of “grieving while growing”. The impact of RA on emotional wellbeing is also seen in published studies, wherein qualitative findings on the experiences of living with RA depicted themes and categories that capture negative emotions such as fear, guilt, anxiety, and depression (31, 32). Moreover, in 2017, Poh et al. (12) conducted a descriptive qualitative study in Singapore on experiences of living with RA and noted a theme on “psychological and emotional challenges”, with one participant sharing their thoughts of suicide. Suicidal thoughts and patterns were also discussed in the Reddit forums analyzed in our study and perhaps more so given the anonymity of the platform. Given the data that support our findings, showing the mental health impact of RA and the potential for mental illness and suicidal ideation, it is critical to continue understanding patient’s mental health needs and move further towards better integration of mental health care in the clinical setting.
An important contribution of our paper is a conceptual framework for understanding how RA impacts someone’s mental health, highlighting the interactions between physical, social, and emotional experiences. The connection we have observed between RA symptoms and disease management with aspects of wellbeing is supported by one qualitative study published in 2017 by Machin et al. (14) on perspectives and management approaches for anxiety and depression in individuals in with RA in the UK, as participants shared the negative impact functional limitations and pain had on their mood. Interestingly, in the same study some participants felt that a depressed mood also impacted their disease activity in terms of flares (14). Although the study by Machin et al. (14) focuses on depression and anxiety, it diverges from our study to primarily discuss barriers and preferences for mental health support. An advantage of our paper are insights into several factors, such family planning, feelings of not being understood and guilt, that provide opportunities for health care providers to support the mental health of their patients with RA. Further, the preliminary framework can be strengthened through incorporating findings from other studies along with future qualitative exploration into the mental health experiences of individuals living with RA.
Strengths and limitations of our study warrant discussion. We demonstrated a systematic approach to identifying and applying a thematic approach to analyzing eligible subreddit threads to understand experiences of individuals with RA regarding their mental health. Currently, there is growing literature utilizing Reddit to explore topics and issues experienced by patients with arthritides (33, 34). Features of this widely popular and highly accessed platform including anonymity for users, no word limits on entries, as well as engaged subreddit communities make it particularly suited for discussion of potentially sensitive and stigmatizing topics such as mental health. Our approach allowed us to take advantage of these features by drawing from this world-wide, immense pool of data. However, due to the anonymity of the Reddit posts, we were not able to gather demographic information about users. As we were also not able to gather information on disease, we cannot be certain of users’ diagnoses or that they truly have RA. However, we systematically searched relevant subreddits for individuals with RA. Finally, due to the individual variabilities in expressing one’s mental health, the keywords used to identify eligible posts for this study may not have captured the entirety of eligible Reddit threads.