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Is Talking About Having RA with Others Difficult?

David wrote about why it's challenging for him and many others with RA to talk it (https://rheumatoidarthritis.net/?p=39646).

Is it hard for you to talk about having RA with others? If so, why?

  1. I have a difficult time discussing it with healthy people because I'm afraid that 1) they will judge me and find me wanting, deciding that I'm a whiner, or 2) decide I can't function with the other people I work with and push me out of my job, or out of activities I enjoy.


    I was diagnosed about five years ago with aggressive RA. My doctors and I had a long road to getting it sort of under control. I continued to have pain, so I decided to keep it to myself in my work and social lives, and soldiered on. I switched rheumatologists (I found one an hour away versus 3 hours away), and my life changed. This rheumatologist told me I had fibromyalgia, and along with my PCP, put me on Cymbalta. I LOVE what Cymbalta has done for me. I've also found, with much less pain, it's easier to discuss my RA, in a limited way. I no longer fear losing my job, or being forced to quit doing the things I love.


    We all know the control of RA is a moving target, so what the future holds is anyone's guess. It makes it easier to take it on when you can discuss your RA with others in your circle. It's too bad it is so difficult to do!


    Michele

    1. Hi . I am not sure anyone every can really understand unless they have it. I am glad you have such a wonderful support network. Sending the best of all wishes your way. - Lori (Team Member)

    2. Hi . As the husband of someone with RA (my wife, Kelly Mack, is a contributor here), it is always great to hear about supportive spouses, friends, and family. You mention how the definition of a good day changes. Kelly was diagnosed at two and we've discussed how she doesn't really remember anything different. I suspect that after having the disease for a long enough period a similar effect happens where a persons perspective necessarily changes to accommodate for what they are experiencing - how else could a person manage and keep going. I think or maybe I should say hope that this is what I've managed to absorb from my time with Kelly - that I'm never really going to understand, but that we can be there for each other the best we can. Best to you and yours. Richard (RheumatoidArthritis.net Team)

  2. I have a hard time talking to others about my RA because I don't want them to think that I am a whiner and that I am only interested in my illness. Unless it's really obvious (like I have to use a cane or something) I try not to bring it up. I don't even like to talk about it with my parents or sisters. But my husband is my sounding board and I appreciate him listening.

    1. appreciate you sharing. Glad to hear that you have such a wonderful support in your husband. Wishing you relief ahead. Best, Kelly rheumatoidarthritis.net team member

    2. I have found saying I have RA or it’s my bad day for my RA doesn’t go over well with people. Maybe they don’t understand what RA is. I’m not sure but it makes me uneasy. It’s hard to be out around people when my RA is bad. They don’t help. My husband listens. He’s sympathetic. But I still only think another RA sufferer really knows.

  3. You know you eventually get old enough to no longer care what others think. I wish I had gotten there earlier. 😀 .............. rick

    1. How old is old enough?! I’m 77. My difficulty is my wife is the person I talk to most and I’m aware of putting too much load on her. She has to care for her mother too and has chronic physical illness herself and is therefore often often tired. During Covid lockdown especially I haven’t met family or friends. Having ME/CFS and Fibro it’s hard working out which is which and there are so many online communities it’s hard to know where to share each bit! Eg. brain fog happens across all. Oh and I didn’t mention osteo! Am I sounding enough of a boring whinger?!

      1. You are old enough when it no longer matters to you if people think you are a boring whinger. 😀

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