What I wish people knew and could understand

I have had RA for 13 years, probably 5 more before I was diagnosed. When you ask me if I can go all day shopping with you next Saturday, and I say, I will have to wait and see. Understand that isn’t me putting you off. I will truly have to wait and see how I feel that day.

If I cancel on plans at the last minute, understand that it upsets me probably more than it upsets you. I want to go places and do things, but sometimes I can’t.

When you see me park in the handicap parking and get out of my car, don’t judge me because you don’t think that I look sick. If you could feel my knees, feet and shoulders as I walk to the door maybe you wouldn’t look down your nose at me.

I am a private person and don’t talk about my RA or complain, when friends ask me in passing, how are you. I smile and say I am fine. They really don’t want to hear my list of what is hurting at the moment.

The biggest thing is, I have to plan my activities and rest time. If I am with a group of friends and we have been out shopping or visiting a place that requires a lot of walking. Don’t be upset when I decline going to dinner with you, or on another outing the next day. I am not being rude; I just have to have time to recover

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Comments

View Comments (5)
  • Richard Faust moderator
    2 years ago

    Thanks for writing CjGrits. As you can see from the previous comments, you are articulating what many are feeling. RA is nothing if not unpredictable. This article from one of our contributors looks at dealing with this aspect of the disease: https://rheumatoidarthritis.net/living/unpredictable/.

    Also, thought you might have an appreciation for this article from one of our other contributors on things not to say to someone with RA – those things you hear from those who don’t understand: https://rheumatoidarthritis.net/living/8-things-not-to-say-to-someone-who-has-ra/.

    Know that you are can always come here for a community of people that do understand. Wishing you the best. Richard (RheumatoidArthritis.net Team)

  • CjGrits author
    2 years ago

    Thank you both..It’s good to know that others feel the same way. Although, it sucks that we feel like we do!

  • vanilla822
    2 years ago

    That is exactly what i wish people would understand. Thanks for saying exactly how I feel. It’s hard not to go to my grandson’S baseball games because it’s damp and i can’ t sit that long. It’s hard not being able to just pick up and go like i used to. RA has changed my life and im just trying to manage and cope. Thanks for your post.

  • SunnyG
    2 years ago

    You wrote exactly what I’ve been feeling but didn’t know how to say it. My daughter has a way with words but they tend to escape me when I need them the most so Thank you!

  • Steph T
    2 years ago

    Thank you for your post. It helps to know others struggle with these issues, although I wish no-one had to. I’ve lost all my friends to these misunderstandings and deal with harsh judgment from my family. You inspire me with your story. You’re doing your best and taking your days as they come. I wish you all the best. God bless you!

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