What can you say?


The other day I had lunch with a few co-workers. We were talking about vacations and told them that I had gone to Europe a few years ago and that I can’t imagine doing a trip like that again because it was so tiring (but yes, it was incredible).

One of women, who is about my age, responded “What are you ninety?”

I laughed and said “Sometimes I feel like it,” and left it at that.

After lunch I thought back on that moment and wondered if I should have said something different. I’m often very guarded about my disease. I feel awkward telling people about it and having to explain it. I worried that if I had said something the person would have felt embarrassed and bad about their joke. But not saying anything, I wondered if they think I’m just a big complainer.  Part of me thinks “I shouldn’t have to tell anyone unless I want to” but then the other part of me says “well this is part of who you are and you should let down your guard.”

I struggle with this issue day in and day out. I think it may be part of the reason why I don’t like to change employment or move, although there is a laundry list of reasons for that. But one is having trouble feeling comfortable with sharing that part of myself with others.

Sometimes I wonder if it would be different if I had a disease that people recognized as something “normal” for my age. I honestly don’t know. Maybe this is something that people struggle with no matter what their situation, it just is different issues for different people.


6 Responses to “What can you say?”

  1. 1 raandme

    I feel exactly the same and am usually very guarded about my R.A. In fact, I usually get offended when people come right out and ask me what’s wrong with me.
    But youre right. It does tend to complicate things. Especially when meeting new people.

    • 2 incandescentflower

      I can’t understand that. I think it never occurs to people that we could be sick and so sometimes it just comes off as rude. It is nice to hear I’m not alone.

  2. I think you made the right decision in not trying to push the topic. My experience has been that people who make such insensitive comments are the least willing to try to understand anything about our life with illness. I used to try, but all it led to was more frustration. Now I just move on…

    And in terms of knowing who and when to open up, I generally let my gut instinct drive me.

    I’ve also learned that people close in my life are unable to accept my illness. It’s been hard and has caused a lot of pain, but I think it’s another notch on my belt of RA lessons.

    • 4 incandescentflower

      That is a good point. I think it is hardest when the ones you love don’t understand or can’t deal with their own feelings about the RA.

  3. 5 Kelly

    When I read this this a.m., I just sighed.

    Here is another one:
    I can’t take something someone wants to hand me. I say, “It’s too heavy” and they say, “No, it’s not heavy!” This has happened several times with people who know about the RA. If only we could get into their reality where RA is no big deal. 😀

    • 6 incandescentflower

      Yeah in situations like that I really don’t understand people’s reactions. I mean, why do they think you are telling them something if it isn’t true? It doesn’t make the issue go away, but it helps to know that it isn’t all in my head and that other people experience things like this too.

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