Reddit, online forums permit open, anonymous discussion of mental health in RA
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Reddit and other online forums allow patients with rheumatoid arthritis to anonymously share mental health experiences they likely would not otherwise share with others, according to findings published in BMC Rheumatology.
“In addition to physical manifestations of RA and their impacts on patients, it is also important to consider mental health impacts,” Mary De Vera, PhD, and Jamie Y. E. Park, both of Arthritis Research Canada and the University of British Columbia, and colleagues wrote. “Mental health can be defined as the state of one’s mental well-being and involves an individual’s ability and capacity to cope with their environment, process and solve problems, form meaningful relationships, choose their own level of social participation, and lead a personally fulfilling life. Prior research, particularly those using qualitative approaches, have identified aspects of poor mental health (eg, as a theme or sub-theme) associated with RA.”
“However, to our knowledge, studies that have directly investigated the broader concept of mental health in individuals with RA are limited,” they added. “Internet-based communities and online forums where patients discuss mental health experiences, seek advice and receive peer-to-peer support may represent an authentic source of data for informing such questions on the impacts of mental health in RA.”
To analyze and understand the mental health experiences of patients with RA as shared on Reddit, Park and colleagues conducted a patient-focused, descriptive, qualitative study. The researchers wrote that they used Reddit as it is a popular site that allows community members to ask questions and discuss opinions and experiences, providing a pool of publicly available data.
Between June 2018 and June 2019, Park and colleagues searched the “r/Thritis” and “r/Rheumatoid” subreddits for a variety of keywords, including “mood,” “mental health,” “stressed,” “depressed” and “anxious.” Among the 81 identified threads, the researchers included 27 in their analysis. Threads met the inclusion criteria if they featured an original post and at least one comment, and if the original poster reported having RA and shared a lived experience, concern or question about mental health. For included threads, the researchers noted the title, word counts for all comments, the number of comments and the number of unique visitors.
According to the researchers, a total of 251 unique users participated in the included threads. Original posts received comments from an average of 9.5 unique users, and the average word count of each original comment or reply was 357.
In all, the researchers reported four overarching themes among the comments and replies. The first, “navigating the management of RA,” describes how the physical effects of the disease, as well as the complexity of treatments and lack of health resources or support, can impact mental health. The second, “experiencing impact on relationships and social isolation,” includes the effects of misconceptions regarding RA, feeling misunderstood and guilt.
Next, “experiencing loss” covers the sense of helplessness brought on by challenges related to work, childbearing, parenting and self-care. The last theme, “experiencing emotional struggles,” reports on the struggle between despair and fighting through, and how this tension leads some to suicide ideation and thoughts of death.
“Altogether, our study contributes towards a better understanding of interrelations between lived experiences of RA and mental health implications,” Park and colleagues wrote. “As with many patients in today’s digital era, individuals with RA look to online communities, such as Reddit, to ask questions and seek information about aspects of RA including disease management and effects on self as well as relationships.”
“Our study not only revealed how these challenges associated with RA impact mental health, highlighting important support roles for health care providers, families, and communities, but also identified opportunities to improve the mental health of patients with RA,” they added. “In particular, our findings highlight the interconnectedness of RA symptoms/disease management and mental health. As well, we provide insights into areas of future research, including family planning and feelings of not being understood and guilt.”
Perspective
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As rheumatologists, we are taught that anxiety and depression are common in RA but this study looks deeper and delves into the mental health challenges faced by patients with RA. The study systematically searched Reddit, a social media website where individuals anonymously share experiences and post questions, in order to understand the experiences of persons with RA regarding their mental health.
Only 251 unique voices were identified, and because of the anonymous nature of the site, the authors were unable to gather demographic information on those voices or confirm their RA diagnosis. Furthermore, the typical Reddit user has internet access and is from the U.S., United Kingdom or Canada and is between 18-49 years of age, clearly identifying selection bias to the data. Having noted these limitations, however, clinicians will hear echoes of their daily interactions with patients in the study, lending credibility to the authors' work.
One surprise for readers of the study may be the number of posters who identify frequent suicidal ideation related to experiencing loss and guilt connected to their diagnosis. Another is the trauma of the social isolation stemming from feeling misunderstood by family and friends of RA patients in this age range. Important to note is that the 12-month study was conducted from June 2018 to June 2019; that is, pre-pandemic. RA patients' feelings of isolation and loss and disability are only likely to have been heightened in the last year as their access to medications or work or social connections were likely challenged by COVID-19.
The paper offers rheumatologists insight into the mental health challenges of RA beyond clinical depression and anxiety, thus identifying opportunities for providing better support for our patients.
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Laura P. Kimble, PhD, RN, FNP-C, CNE, FAHA, FAAN
The study by Park and colleagues is an important reminder of how autoimmune diseases, such as rheumatoid arthritis, negatively impact mental health. The researchers documented postings of rheumatoid arthritis patients on the Reddit social media site, highlighting the helplessness that patients experience as they navigate a chronic illness where there is the appearance of wellness yet the reality is entirely different.
The postings revealed patients experienced relentless fatigue and pain that interfered with the most basic activities of living. Most poignant of the findings were that patients’ often felt misunderstood and discounted by friends, families and health care providers. Promoting mental health for individuals with autoimmune diseases starts with believing patients.
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