Please don't tell me ...

What words should you never say ?

What are forbidden things to say? What does really hurt? I would love to tell you. But it is complicated.
Me, I don't want to hear about your neighbour who has the same disease. Or some alternative therapy that was in the paper today. But someone else might.

It is a personal thing.

Still, I think I may offer you a few useful thoughts.

What I really dislike:

Is it improving yet??

No, this will only get worse!
(He/she can't or won't believe it's true)
Being chronically ill is different: you are not getting well, nor getting back on your feet. No, I'm not going to be fine.

How are you (now, these days, doing) ???

Sorry but I'm busy, uhm, yeah, sure, fine.
(She/he pities you?)
He/she talks overly sympathetic. Looks at you: poor thing. Often at birthdays, reunions, when you just returned to your job or by people in the street.

What I would prefer in stead ?

Want to tell me how you are doing? Or rather not?
Or:
How's work, the kids, the garden?

And --used by my co worker Marino-

Hey Nel, so good to see you (again)!

That's brilliant!
No matter how I feel, today he tells me, he is happy to see me.

I think it is about these things:

Do not question me or my feelings.
Do not assume anything.
And rather tell me how you are doing.
If you notice I get tired: offer to just listen.
Listening is far more tiresome than talking.
(Ever noticed that?)

Comparison

Imagine what you would need when you are in bed and have the flu. It's just about the level of energy most long term ill people have.

And last but not least: don't be afraid to make mistakes.
Ask how you are doing in your behaviour and... in your communication.

Chronic Disease and every day life
Personal website at http://www.xs4all.nl/~nvwagen/english/
Feel free to copy for personal use. To publish in any form please contact me.
I do not advise in any medical matter. Please use statements, ideas, remarks to discuss or consider.