November 9, 2012

The Things That People Say

Posted in ME/CFS tagged Chronic fatigue syndrome, Conditions and Diseases, confusion, coping, Fatigue (medical), friendship, Health, Helpers, humor, management strategies, ME/CFS, one of the lucky ones, sarcasm, support, things people say at 5:46 pm by Reva

I’m sure I’m not the only person with who hears the same comments time and time again, from people who think they have all the answers to the ones who are just not thinking.  I know that these people mean well and if I didn’t hear some of these things time and time again I probably would be grateful for the comments.  Actually, I usually am grateful because most of the time people are trying to make me feel better or help, but sometimes I hear these comments time and time again and it can just remind me that I have an invisible illness, and ironically remind me that I am NOT well.  I used to answer honestly, but now I just nod and smile.  Here are some of my “favourites”.  Please feel free to add yours.

I hear: I wish I could work a four-day week.  It must be wonderful/do you have kids/what else do you do?

I say: Yep it is

I think: Yeah, well I wish I could work full time

I think: There are a lot of people who are too unwell to work a four day week, so I am pretty lucky

I think: Yeh, well it takes me three days to get everything I need to get done to keep my head above water, minus the social life.

 

I hear:  What did you do for the weekend?

I say: Not much, caught up on some TV

I think:  Did the washing, caught up on the dishes, put out the garbage and washed my hair then had no energy to do anything else

I hear: Oh that sounds wonderful.  I wish I could have a weekend like that.  I had to go to a party/go dancing/go shopping/visit friends and family/do study/go out for dinner/fly to the moon.

I say:  Sure, it was nice

I think:  I wish I could party/go dancing/go shopping/visit friends and family/do study/go out for dinner/fly to the moon

 

I hear:  You have CFS? My friend’s brother’s wife’s sister’s school teacher had that once!

I say: Really?

I say:Uh-ha

I think:  They didn’t have it once.  Either they had something more short term that had some similar symptoms or they still have  it and are lucky enough to be managing it right now

I hear:  Have you tried…?

I say:  No.  Thank you.  I’ll look into it

I think:  No but I’m sure if it was affective I would have heard about it through my ME/CFS networks and there would be someone working hard to prove the theory so they could cure the millions of people suffering everyday and make millions of dollars.  I’ll file it away with the other three thousand seven hundred and eighty two “cures” people have shared with me and when I have the energy, I’ll look into it.

I hear: You look really well.  You must be feeling better!

I say:  Thank you

I think:  Nope.  I just looking in the mirror and realised I looked particularly pale, pasty and zombie-like today so covered it with an extra layer of make-up and got out my good clothes because I haven’t had the strength to wash and iron my work ones.

 

I hear:  So are you better yet?

I say: Nope

I think:  Nope.  I’m over it too.

I think:  I’m coping.  I’m getting out of bed, living my life but I’m not “better”.  I’ve accepted that some days will be better than others, but I continue to push my limits because even though I know I’ll never be “better” I keep hoping for a miracle.

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