Table 2 Summary of the themes, categories, representative quotes

1. Navigating the management of RA

1. How symptoms of RA impact mental health

Fatigue

 - “What’s hitting me the hardest is the fatigue, I have no energy to even get out of bed.” (rRheumatoid)

Pain

 - “Can I hope to have pain free hands ever again?” (rThritis)

2. Lack of health resources and support

Finding resources and support

 - “I really would like to join a local RA support group but cannot find any here. I am old school, I like talking to people!” (rRheumatoid)

Struggling to find doctors who understands

 - “At first she was great but the past year there is just a severe lack of communication and I feel she really isn’t listening to me. My husband who just recently started going to visits with me feels the same.” (rThritis)

3. Complexity of medications

 - “Sometimes I have a brief cry just thinking about sitting in my room, alone, injecting MTX into my fatty tissue. It’s not the pain or the needle... Just the reality of it, and the fear of side effects, and just going through this all alone.” (rRheumatoid)

 - “I’ve been so discouraged lately about my arthritis and all the troubles and stresses it brings me that I stopped taking my meds.” (rRheumatoid)

2. Experiencing impact on relationships and social isolation

1. Experiencing misconceptions of having RA

 - “Just recalling all the pressures and hate I got at your age from people calling me lazy, or accusing me of poor sleeping habits, lack of exercise, or whatever other homespun shit they could think of infuriates me.” (rThritis)

 - “I’ve had people tell me to “drink this tea” and that my meds are bad for me, but none of them have had RA. The worst thing I’ve experienced was a kid telling me I couldn’t have RA cuz he does but doesn’t need medication.” (rRheumatoid)

2. Feeling not understood

Family not understanding

 - “My parents are pushing me super hard to get a job and do extracurricular activities but I can’t even get through school most days without having to leave or go to bed as soon as I get home, leaving me without a social life.” (rThritis)

Co-workers not understanding

 - “They know about my RA and they know about my MTX injections. However, they haven’t been that supportive. There’s a lot of blank stares when I share anything about my RA.” (rRheumatoid)

3. Feeling guilt

 - “I don’t want my parents to be wasting their money on me and my medical problems (I also have a heart condition) that’s the part that makes me feel so damn guilty” (rRheumatoid)

 - “Now I feel guilty because I can’t do anything at the moment and my darling kids and husband are picking up the slack for me.” (rThritis)

3. Experiencing loss

1. Daily functioning and self-care

 - “You can’t DO things that most people in their 20’s want to do, which is enjoy life, and getting that higher education your folks want you to have, going camping, or on trips, a lot of this can feel very out of reach.” (rRheumatoid)

 - “Going to the gym is so relaxing and reliving and just takes all the nonsense away but I can barely walk.” (rThritis)

2. Work disability

 - Breaks my heart to know I’m not going to be able to do the sorts of things I desperately want to do with my career, but I had to make choices based on where I could do the most good while still being able to live my life. (rRheumatoid)

 - I teach and finals are next week, my hands hurt so bad, no idea how I am going to type them, much less grade them. Supposed to prep all weekend but all I can seem to do is stare off into space, try not to throw up and wonder all the ways my life is going to change. (rRheumatoid)

3. Family planning and parenting

 - I don’t want to show my family, my kids/ hubby are really supportive but I don’t want to freak them out so I am showing them that I GOT THIS but inside I am frightened and trying to accept and adjust. (rRheumatoid)

 - I developed RA after pregnancy so it’s really hard to deal with the disease, taking care of a child, and also weighing whether or not I should have any more children. (rRhematoid)

4. Experiencing emotional struggles

1. Fighting through

 - “Sometimes you just have to push through (with the agreement from your doctors). This takes a lot of physical and mental energy, and you’re likely to be wiped out afterwards, but it is an effective coping mechanism for some people.” (rThritis)

 - “I have a system to help myself get over that bad feeling when I wake up in pain. And I know a lot of people have a system, but some people don’t. I want to share mine for those who haven’t found a way to help themselves turn from “this is so depressing, why must I always hurt, today is the worst” mentality to one of “I got this, so what if I’m in pain!? Today is going to be good because I’ll make it good!” (rRheumatoid)

2. Having suicidal thoughts and patterns

 - “So much of my life is decided for me by my physical inability, and I refuse to live in a state in which I am unable to care for myself. Death is not the worst part of life, nor even the worst thing that can happen to me, and I’m not scared of it at all. I’ve decided to die about the time I no longer have the physical agency to make that decision for myself.” (rThritis)

 - “I’ve spent quite a few evenings over the past month in my room. Suffering from an anxiety attack and at times, suicidal thoughts.” (rRheumatoid)