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Attention Please!

I’m new here and I’ve felt a kinship from reading everyone’s posts! I’m the only one in my family who has RA, and it seems the only one who knows about it also. Most of them (husband and kids excluded) look at me like I’m an alien when I attempt to explain it. One of my family members who I’m really close to has a child with an auto-immune disease also, and I am fully engaged in learning about it and talking about it. I really enjoy this little guy! My frustration is that whenever I mention what is going on with my RA I’m met with silence, averted eyes, or a quick subject change. It happens with others also. I feel very invalidated when this happens.

Does anyone have any suggestions or experience with this type of situation? I know it’s a little childish, but I want them to pay attention to me!

I’ve had RA for a long time and was officially diagnosed in 2011. Since it is a huge part of me, I naturally want to share it with those I’m closest to. I need to find a way of communicating with this person that is effective.

Any suggestions?

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Comments

  • Norreen Clark
    4 years ago

    Well in my family no one ever ask me how is your RA doing and I also take care of my husband who has more disabilities than I do. He gets all the attention. I have had RA for 36 years and I have a hard time believing I have it. I guess that is what keeps me going.

  • Jenn Lebowitz
    4 years ago

    Hi Amy,

    Thank you so much for sharing your story, and for being part of the community!

    We hear you on everything you expressed. Please know you are not alone, and we welcome you to come here with questions or for support any time! I thought you might find a couple articles helpful in dealing with others when it comes to RA – at the very least in finding some solace in knowing you’re not the only one who faces these types of challenges! (1) http://rheumatoidarthritis.net/living/invisible-illness-invisible-friends/ and (2) http://rheumatoidarthritis.net/living/managing-peoples-perceptions-ra/.

    Also, we’ve heard from community members that sometimes it helps to share articles with friends or family members, as a way of explaining what you’re going through. If that idea resonates with you, please feel free to do so. In addition to our pages on “what is RA?” (http://rheumatoidarthritis.net/what-is-ra/), symptoms (http://rheumatoidarthritis.net/symptoms/), and the like, another such article that might be helpful to share is: http://rheumatoidarthritis.net/living/community-thoughts-wish-more-knew/.

    I truly hope this helps! And please know that you have an entire community here at RheumatoidArthritis.net here to support you, any time!

    Warmly,

    Jenn (Community Manager, RheumatoidArthritis.net)

  • Amy author
    4 years ago

    Thanks Jenn, for the welcome and reassurance. It is so helpful to read these articles and personal posts. I am planning on sharing the useful info with my family, and hopefully to have better understanding with my sister. Just accepting that not everyone will understand or want to understand is like a burden lifted off my shoulders. I know what’s true for me.

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