In total, 81 threads including 33 threads from r/Thritis, 48 from r/Rheumatoid were identified. After applying the inclusion criteria, 27 threads including 6 from r/Thritis and 21 from r/Rheumatoid, were included in the analysis (Table 1). In total, there were 251 unique users that participated in the threads, including 51 from r/Thritis and 200 from r/Rheumatoid. We noted an average of 9.5 unique users providing comments and/or replies to the original post. We also determined that the average word count across original posts and comments/replies was 357.
Table 1: Summary of Subreddit Threads Downloaded and Included
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|
r/Thritis
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r/Rheumatoid
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Subscribers
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4,200
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6,000
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|
Threads downloaded*
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33
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48
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Threads included*
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6
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21
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Total numbers of unique commenters
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51
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200
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Average number of total comments
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14
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18
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Average number of total users that commented**
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9
|
10
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Word count of post (excluding title)
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407
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306
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* Between June 21st 2018, and June 21st, 2019
**Exclude autobots (e.g. converter-bot)
From our thematic analysis, we identified four themes – 1) Navigating the management of RA; 2) Experiencing impact on relationships and social isolation; 3) Experiencing loss; and 4) Experiencing emotional struggles. These are described as follows. In addition, a summary of the themes, categories and additional representative quotes are shown in Table 2. [Insert Table 2 located in Page 20]
Theme 1: Navigating the management of RA
The first theme captures how living with RA including dealing with, and managing the disease particularly affects users’ mental health and constitutes three categories: 1) how symptoms of RA impact mental health; 2) lack of health resources and support; and 3) complexity of medications. For example, fatigue was significant and limits the ability to “keep up with the most minimal demands of society” (rThritis). One user shared that the “depressing part about [fatigue] is realizing how useless [they are].” (rThritis). Although users shared efforts to overcome fatigue, they also share that “any sense of normalcy would last six weeks at most and cost me thrice the time in sleep” (rThritis). Similarly, with pain, users mentioned that they are “in so much pain and just not sure what to do.” (rThritis). Users also discussed struggles with managing RA in terms of challenges with finding resources and “finding [a health care professional] who understands [RA patients]” (rThritis). Many users also expressed difficulties with finding age-specific resources, with one noting that when they “read the health magazine it's all older people who have lived their life and now they have RA” (rThritis). Users expressed their dissatisfactions with their doctors when they “scratch […] their head about what to do” (rThritis) or are experiencing a “lack of communication” (rThritis). Finding a new doctor can also have a toll on their mental health since “explaining everything for each new person can get tiring” (rRheumatoid). Another aspect of living with RA that had an impact on mental health was managing the disease, particularly with medications, in terms of finding optimal therapy, feeling overwhelmed with number of medications, and experiencing fear of side effects. Users mentioned that “it is defeating to have to try so many med[ications] and not have found one that works” (rThrtitis). Taking medications was also discussed with one user sharing that they felt “discouraged lately about [their] arthritis and all the troubles and stresses it brings [them]” (rRheumatoid). As well, some users who had read information online shared feelings of concern, particularly with initiating these medications as captured by this quote: “[the medications] sound[ed] scary and [they were] worried that the side effects will be worse than the disease” (rRheumatoid).
Theme 2: Experiencing impact on relationships and social isolation
The second theme focuses on how RA affects mental health through others’ preconceptions and the related impact on relationships. Three categories comprised this theme: 1) experiencing misconceptions of having RA; 2) feeling misunderstood; and 3) feeling guilt. Misconceptions directed at individuals living with RA were perceived by users as negative judgement and unrealistic advice. For example, one user expressed being told “most people have some arthritis, so I should learn to deal w/it.” (rThritis) while another shared that they felt being seen as “lazy” and “over exaggerating the pain and exhaustion” (rRheumatoid). Users also shared receiving irrelevant, sometimes harmful advice including being told that “no DMARDs, biologics, or steroids have a place in the treatment of RA.” (rThritis). Perceived misconceptions were closely related to users feeling misunderstood by other people, including family members and co-workers, who may not comprehend the nature of a chronic disease like RA. One user described the challenge of others not understanding the difference between acute and chronic diseases as “healthy people see the "win condition" as killing the disease. My win condition is maintaining the status quo for as long as possible” (rRheumatoid). A lack of understanding regarding RA can stress relationships and create a sense of loneliness or disconnect, especially when family and friends “cannot understand why [they] are so tired all the time and why [they] cannot just "push through" the pain” (rThritis). Lastly, the third category describes the feelings of guilt held by users with RA, often not wanting to be a burden, and “feel[ing] guilty because [they] cannot do anything at the moment and [their loved ones] are picking up the slack for [them]” (rThritis). Feelings of guilt also arose from family spending resources for RA care as shared by this user: “I don’t want my parents to be wasting their money on me and my medical problems […] that’s the part that makes me feel so damn guilty” (rRheumatoid).
Theme 3: Experiencing loss
The third theme captures how individuals with RA felt a sense of loss, which can be ongoing process given the chronic nature and unpredictability of RA. This theme is characterized by users with RA as feeling “stuck in this confusing place where I’m not sure what to do” (rRheumatoid) as well as feeling “hopeless and lost most days” (rThritis). The experience of loss touched on helplessness brought by the inability or challenges with performing self-defining activities including self-care, work, and childbearing or parenting. Due to the symptoms of RA and functional limitations, many users expressed having to manage their expectations and shared how RA impacted activities of daily living, from exercise to “having trouble holding [a] coffee cup without pain or carrying grocery bags” (rRheumatoid). With regard to work, individuals with RA described being scared and worried about their future. Indeed, this uncertainty affected the mental health of some users, with one sharing “the more I think about how bad it is, how worse it will get, how it’ll ruin my career, and how many joints I’ll inevitably need to get replaced, the more depressed I get” (rRheumatoid). RA may also lead to individuals deciding to make sacrifices in their careers in order to prioritize their health. Lastly, the third category describes how the sense of loss associated with RA also extended to childbearing/family planning or parenting. Users who had children shared challenges with parenting sharing that it is “really hard to deal with the disease, tak[e] care of a child, and also [weigh] whether or not I should have any more children.” (rRheumatoid). Not only does the management of RA detract from the ability to care for their current children, but it also creates hesitancy and worry around future pregnancies, with women expressing “wanting to have more kids but being scared of how I’ll handle it” (rRheumatoid).
Theme 4: Experiencing emotional struggles
The fourth theme describes the emotional burden experienced by individuals living with RA, particularly the ongoing tension between pushing through and feelings of despair, and in some cases, suicidal ideation. Two categories build the fourth theme: 1) fighting through; and 2) having suicidal thoughts and patterns. The concept of fighting through captures users’ accounts of wanting to push through both the physical and mental impacts of RA. To get through the day or situation, users with RA reflected on needing to put on a façade, where the “thought of going in and smiling and pretending everything is fantastic is so exhausting” (rRheumatoid). This seems to be a reoccurring notion that resonates with many diagnosed with RA as others also described mechanisms to cope with and overcome this challenge. However, for some individuals, the emotional pain evolved into reflections on mortality and suicidal ideation, as captured by the second category. Indeed, this aspect emphasizes significant suffering that can lead to suicidal thoughts and patterns, with one user voicing “It’s been so bad recently I’ve had serious suicidal thoughts, because it feels like it will all be easier.” (rRheumatoid).
Framework for understanding RA and mental health
A thematic map was created to understand the relationships amongst the themes and categories (Figure 1: Conceptual framework to illustrate the connections among themes and categories). The framework illustrates the reciprocal relationship that theme 1 (navigating the management of RA) has with both theme 2 (experiencing impact on relationships and social isolation) and theme 3 (experiencing loss). This relationship is evidenced by, for example, users seeking help from healthcare providers (theme 1) and relaying a “severe lack of communication and [feeling] she really isn't listening to me” (rThritis), which connects to feeling not understood (theme 2). In addition, the effects of RA (theme 1) lead to a sense of loss (theme 3) through marked impacts on daily functioning, work, and family, and overall “finding out that you can't do the same things as you used [to]” (rRheumatoid). These losses may initiate looking into additional health care supports (e.g., mental health, occupational), or in some specific cases, reflecting on the effect of medications: “My option to have children is pretty much thrown out the window because of all the meds I'm on” (rThritis). The unidirectional relationship between theme 1 and theme 4 (experiencing emotional struggles) is highlighted by a need to fight through pain, fatigue and management of RA, with one individual sharing “weekdays I’m forced to get 6.5 hours of sleep and it feels like I have the flu and every movement aches and just feels heavy” (rThritis). In more severe cases, having RA may gradually lead to having suicidal thoughts (theme 4), with one user stating that they “could literally fill a book about every way arthritis makes [them] depressed and borderline suicidal at times” (rRheumatoid). Finally, this framework also depicts potential connections among categories from themes 2, 3, and 4. For instance, there is perhaps a sense of guilt (theme 2) arising from a loss of abilities such as parenting (theme 3), with one parent noting “today I barely saw my kids even though I was off work because I fell asleep on the couch due to the fatigue” (rRheumatoid).