When People Just Don't Get It

By Leslie Rott

3 min read

Recently, my boyfriend and I had plans to go to the movies with another couple.

I hadn’t felt good all day. I alternated between napping and feeling awful, but managed to rally when it was time to go to the movie.

Unbeknownst to us, the other couple had purchased their tickets online.

We hadn’t, and while it wasn’t opening weekend for the movie we were planning to see, when my boyfriend and I got to the theater, the movie we were there to see was sold out.

And believe it or not, there was nothing else playing around the time of the movie we wanted to see.

We waited for our “friends” to get to the theater, and when they got there, we explained the situation.

They told us that there were a few other theaters around that might have something we could go see, but we didn’t really find anything.

And while we were trying to figure out what we were going to do, our “friends” told us they had to go so they wouldn’t be late for the movie.

Although they encouraged us to stick around so we could meet up with them after their movie was over.

My boyfriend and I walked around for a bit, checked out a few stores, and ultimately decided to head home. I was pretty sure I could make it until the movie got out, but couldn’t guarantee that I would be up for several hours of hanging out beyond that.

This is probably just poor etiquette, in general, what the other couple did.

Both my boyfriend and I were disappointed in the way the night had gone and the way our “friends” had acted.

Obviously, we learned a basic lesson that if someone buys tickets online for a movie, they should get tickets for everyone that’s going, so we are guaranteed that we all get a seat.

But on a deeper level, it made me realize how little some people get my illnesses.

I guess I shouldn’t be so surprised by this because I’ve dealt with ignorance before…and often…

But it really bothered me that there was no understanding that, had I known the way the night was going to go, that I wouldn’t have tried so hard to rally and get my butt out of the house.

Clearly our “friends” were more interested in seeing the movie than how they made us feel.

It’s not just they put us out in terms of convenience, but they put us out in that I didn’t feel good, and the whole situation could have been avoided by 1) either us deciding not to go at all or 2) them getting tickets ahead of time for all of us so that we could have actually seen the movie like we intended to.

I have a feeling that if they would have gone to the ticket counter and explained the situation, they probably could have gotten a refund for their tickets.

I don’t want to make every situation a teachable one. But I really wish that I could have gotten across to them the amount of effort it took for me to make it out that night, only to have made the effort for nothing.

Don’t get me wrong, I enjoyed the time that I was out with my boyfriend. But he and I could have spent that time together any time, not just when I wasn’t feeling good.

This isn’t the first time that we’ve hung out with this couple, and they are somewhat aware of my health issues, but they clearly just don’t get it. Which makes me realize that I have to look out for myself and do what is convenient for me. The next time I feel awful, I might just go with it, and not make the effort to get out of the house, when I have no idea what – or who – awaits me.

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ramojo Member
I appreciate your frankness with your feelings. I like your final paragraph and realizations. It really isn't about whether or not your friends "get it" or not. There are a lot of things about you or I that folks will never "get" related to RA or not! As far as planning your evening goes, here is a tip that will serve you well in the future. I always present my participation in any plans with others with an easy "out". I almost never unconditionally say yes to anything. I always get insurance on travel tickets and use the word "if" when describing future plans. My friends and family are trained and if you present it with confidence, then you will never have to "explain" yourself. You would have said to these folks - "we aren't committed enough to buy tickets ahead of time - if you do then you may be attending this event without us. I never know until the time comes whether or not I will feel up to a long evening out". This allows them to make up their own minds and for you to act independently without regrets. I always say that I make plans and then I break them! it is an "RA" thing! haha. I sometimes bow out of plans when I feel only slightly below par so that I won't feel crappy the next day - esp where walking, long car rides, biking (only recently) or sitting in hard chairs is concerned!
gracerecvd Member
Just my thoughts from my own experiences... We too often have unrealistic expectations of how others should understand and make adjustments accordingly for our illness. Think back to your life before your illness. How much did you know about it and how motivated you were to learn about an illness you didn't have? The responsibility lies with us to be willing to voice our needs to our friends and not just assume they know. Their ignorance does not mean they don't care, they simply don't know. Questioning their friendship over what occurred simply isn't fair. Better communication on the part of both couples may have prevented the situation, like clarifying how the tickets were being purchased. Like you said, we have to take care of our selves and not rely on others to always understand. They won't, they can't, understand because they have not experienced it themselves. I personally no longer expect my friends to simply understand. I take opportunities that present to share with them, being careful not to become that person who only talks/complains about their medical woes. I do NOT want to be that person. My advice, be reasonable in your expectations and forgive your friends when they fall short of understanding.
1. gayla-hill Member
 I agree 100% with Sherrie Lynn. I have some of the best friends a gal can have and sometimes they don't understand what I'm going through. How can they? They don't have RA and no amount of reading or hearing about what it does is going to teach them everything they need to know in order to completely understand what I'm going through. Heck, I myself am still learning. My diagnosis was in August of last year. I'm still learning about how tired I get and what I can and can't do. Sometimes I myself set unrealistic goals because I still don't know my own limits. It isn't fair to expect your friends to know every thing about your life and your illness, I'm sure they have things that they are dealing with that you don't know. Remember you have to give to your friends the same as you expect them to give to you.
Member
Sometimes when I am feeling especially tired, and have the flu and shingles on top of my RA, I have to cancel birthday parties for my grandkids, or holiday events, and just stay home and sleep. My daughter calls me a flake and a drama queen. And then gets mad and keeps the kids away. It makes me sad.
spacevegetable Member
It's a frustrating thing. I have friends I've known for 30 years (I've had RA for 32 years) who still don't always get it. For "normal" people, things like how long you'll need to stand or how far you'll have to walk are usually not a big deal. For those of us with RA, though, it can mean the difference in joining or declining an invitation. To this day, I have to remind my friends and even cajole them to use handicap parking spots when I'm riding with them. They, like many others, don't always view us "walking wounded" as handicapped in the same way as someone in a wheelchair. Many people, even those who should understand better, still view arthritis as something minor that can be cured with a couple of aspirin (thank TV commercials for that).