Many things are the inevitable norm when you have a chronic illness, among them being pain of any level, pacing yourself and accomplishing comparatively little every day--or sometimes nothing at all based on how your body is treating you--and never knowing how you'll feel day to day and hour to hour.
But another thing that is the norm is having to say no. A lot. To anything from family dinner on Sunday, to going out to eat with your spouse, to your best friend coming over to visit.
My family and close friends have pretty much come to expect that more likely than not, I probably won't be able to come to . I frequently have to say no, whether from exhaustion, stomach issues, or my messed up sleep schedule landing me finally in bed when whatever event is taking place.
To those who aren't sick, hearing no much more often than yes could make it seem like either I'm just not really putting forth the effort to make it, or I don't really mind saying no so much and that the event I'm missing isn't all that important to me. But none of those are the case.
A few months ago, on one of many mornings when I was exhausted and miserable, I somehow found it in me to get up, get ready, and make it to a certain event. I decided to just try and get through it. And I got there, sat down, was absolutely miserable, and in the middle of it looked up at Daniel and said, "This is not worth it." No one knows one's body better than oneself, and I know when I cannot and should not say yes.
As far as my frequent no's possibly implying that I don't mind saying no or that the occasion I'll be missing isn't that important to me, that is the absolute opposite of the truth. Every single no I give leaves me with guilt--guilt that maybe I'm not really trying hard enough (even though I know deep down that's a lie) and guilt over the disappointment I'm causing those affected by it--like my husband, my family, and my best friend. Every time I have to cancel on my best friend, which feels like 75% of the time, I feel like an absolutely terrible friend. And even though I know she knows and understands, I don't feel any less bad about it.
And yet, with the endless cycle of feeling awful so often, having many limits, being left with no choice but to say no so often, and feeling guilty about it all, I've come to learn that I have to give myself permission to give myself a break. To learn to be able to say no and not feel like the worst friend/wife/granddaughter, etc. for disappointing people because of something I cannot control. That's certainly something I'm still working on, but something I know I have to learn to do for my own attempt at health and well-being and sanity.
So if you know me "IRL" or have someone in your life that has a chronic illness and you hear no and get cancelled on a lot, please know that what's behind our "no" is not lack of care or love or not trying hard enough but rather an answer that we don't get to choose, plenty of disappointment and guilt, and one more necessary attempt at self-care.
And today, I'm wishing for fewer no's, the ability to not beat myself up when it can't be a yes, and for those I disappoint to understand as best they can.
Also linking up with Link Love.
