I spoke to my beloved cousin today and what she said to me set my teeth on edge. Don't get me wrong, I love my cousin. She's one of my strongest supporters and my prayer partner.
But...what she said really upset me. "you know, I hate when people our age say that they have to take naps or sleep in". It may not have been those exact words but something like that, and I got mad. Not at her....I LOVE her, just at what she said... because I have heard the same sentiment before geared towards me...
There are certain things that no person with a chronic illness wants to hear. These are some of the ones that I have a beef with...
"you look fine to me" "eat better" "exercise more, you will feel better" "I don't understand why you are so tired all the time" "at least it's not cancer" "it won't kill you"
We may look "normal" but are bodies are NOT... If you don't understand, that's fine, I don't expect you too....it's hard for me to understand sometimes...but please don't assume you do understand unless you are a fellow chronic suffer. It's hard enough not to be able to "do". My heart wants so bad to do so many things. My energy just can't keep up. Not for lack of desire, just lack of stamina. It's a lupus thing. It sucks, but it is. Thanks for caring and just understand that sometimes we have to pull back....change plans....take naps....be sad and grieve for what can't be....
