They always mean well…


The people in my life always mean well when they try to give me advice on how to deal with my RA. But the more they do, the less I feel like they understand.

I don’t talk about it too much here, but I am a politics junkie. I watch political tv, read political blogs and try to get as much information about what is happening in the government as possible. One part of this addiction is watching the Daily Show with Jon Stewart. Honestly, sometimes it is the only way I can look at what is going on in our world and not cry.

A month ago, I got tickets for one of the shows  in October. My husband and I made plans to go. As I got more information about the show, I discovered that even though you get tickets you are not guaranteed entry – you must stand in line to get in. My friend who had been to a taping recently told me that she waited for hours in line. This is a problem for me. My feet do not like standing for long periods of time.

Considering this and the fact that I have been sick and exhausted lately, I’ve been thinking about not going. I  really wonder if the benefits of this trip would be overshadowed by how much pain I’d be in.

When I expressed these concerns to my husband, he suggested I look into special circumstances for people who are handicapped. My experience has been that these situations only apply to people who are in wheel chairs or have walking devices. Someone who looks normal, like me, is considered too healthy to utilize such options. And a part of me doesn’t want to go this route and then discover I don’t apply all over again. It just makes me even more frustrated.

Last night, we went out to dinner with my sister-in-law and her husband. My husband was talking about how I didn’t want to go.  My brother-in-law, trying to be helpful, told me that he thought I would regret it if I didn’t go. When I explained that the wait would be the issue, he suggested I listen to my music player.

As I shifted my feet from the pain that had developed from waiting 30 minutes for a table at the restaurant, I just felt like none of them got it. This is something I’ve wanted to do for a very long time. I wouldn’t be considering letting this opportunity pass me by, unless I thought it would turn out to be an unpleasant experience. It is hard enough to not be able to do all the things I want to, but to have someone, even unintentionally, make me feel like I’m not trying hard enough just adds to the pain and frustration of these decisions.

I know they all mean well. I know they all love me. But when they make statements like this, I just feel like they do not understand the severity of my disease and how hard it can be. And that, in and of it self, is disheartening.


5 Responses to “They always mean well…”

  1. I think you should go – take a wheelchair or a rolling walker with a seat and who cares what other think? Go and get in line early with some packed lunches and drinks and see what happens!

  2. 2 incandescentflower

    Thanks for the thoughts. It isn’t about what people think. It really is the logistics of it all. We can’t drive into the city, we need to take a bus, which limits our options in many ways. Still, it would be possible to take a folding chair and camp out. I’m still considering it. We’ll see what happens!

  3. I’m biting the bullet and getting measured for a wheelchair next week… although things have been “good” for me lately and obviously as a young person I have overwhelming feelings that people won’t understand and I “look ok”. I am far more sick of saying no to social invites and feeling limited if I’ve already dragged myself around on crutches past my limit for the day. The times that I have borrowed a wheelchair while I was out at a gallery or museum and once at the zoo were positively liberating, so I have decided to stop beating myself up and second guessing what people think of my situation and just look after what I need. Good luck : )

    • 4 incandescentflower

      That sounds like a good philosophy for me. I spoke with my friends who went to the show and decided I would email them and see if they can accommodate me since there is a lot of waiting inside in a small space. If they do, I’ll go. If they don’t, I have other things I’m going to do that weekend. It feels very liberating to just decide that I will do whatever works out best for my situation. I hope getting a chair helps you be more active! It sounds like you know what you need and are getting it.

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