Later, my partner queried my need to bring ME/CFS up in conversation - not only at dinner, but in many situations.
I guess you bring ME/CFS up in conversation like many people with ICI (invisible chronic illness) - you just want to be visible, heard & understood
. I do (or did) it all the time because I found that people didn't understand why I kept saying "I'm sorry, but......." People need to know where you're coming from
. Otherwise they form incorrect views of you as a person.
People have trouble seeing beneath & beyond the facade that is visible. They only see you in black & white. Like different skin colours, people only see white skin, black skin, brown skin, pink skin etc
At the beginning, know I made a point of telling everyone about it.
So do many of us. We're just so happy to find a reason for our symptoms, something we can explain & give a name. It's like finding the centre of a maze. Who wouldn't want to share the final end of the search/path. In life, everyone wants to celebrate success & share their success with the whole world.
It's just that our success (in finding the name of our health problem) is not the same sort
of success that most people associate (with sharing).
Happy news to one person may be trivial or meaningless to another person. We all have a different perspective on life. We are all unique. That what makes us human.
At times I felt it necessary for the other person to understand my limitations so that I could work successfully with them - eg bank manager.
And our limitations need to be communicated.
I now have to ask people (including my Boss) to speak more slowly or repeat the instruction (so I can process the words & their meaning). And a couple of weeks ago, I had to admit to my Boss that I couldn't do the simple task he had asked of me.
I can't sit, walk or stand for any great length of time. A (supposed) good friend slipped away & out of my life, because I could no longer go for walks in the country & she could not understand my foot/ankle pain (when I had no injury, bandage or plaster cast to exhibit).
If you don't communicate your limitations, then you end up with a difficult (or painful) situation which can lead to consequences which are difficult to surmount, or even destructive to a relationship (which could have been avoided with some simple, honest revelations about your physical or mental well-being or lack thereof).
THink part too was that I was sort of apologizing for my lack of______ (whatever I was lacking at that moment - thought, movement, speech, ability to read, ability to listen, emotional control......).
Why should you have to apologise, for the fact that you have an invisible (or not so invisible) condition. Do deaf people apologise for being deaf? Does a person with Crohn's or Diabetes have to apologise for their specific dietary needs?
No, it's accepted as just "being the way it is."
I think you have every right to be heard & every right to be respected for what you say or do.
What has happened to good old values of respect & understanding?
Sometimes just so happy to be out of the house and talking with someone my "appropriateness filter" doesn't work.
Can I console you with the fact that my "appropriateness" filter never worked.
Think my partner has a point that often people just don't care
No, I guess they don't - every one is so busy being busy, that the busi-ness becomes their whole world, they can't see beyond that world.
So I guess one of my necessary adjustments is learning to be more guarded in who I talk to and what I say - to try to think before I open my mouth.
It's an adjustment which is very hard to make. I wish you success in trying.
(Sorry this post is not on the subject of discussion, but I really wanted to say my piece here).