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.
I can't even imagine to pain and guilt you must feel. You have to let the guilt go....anyone that knows you knows your situation and understands. you have to take care of yourself. Your friends and family will be waiting and ready for you on the days you can say YES!
ReplyDeleteOh girl! I loved this post, everything about it. I have RA so I totally get how you feel about saying No. I was that girl that always preached about how people needed to say Yes more often and experience life and then I was diagnosed with RA and I still struggle with letting people down. I'm still getting to know my limits of what I can and cant do from day to day and I am not the same party all night and dance until the wee hours girls anymore. I hope you have more good days than bad days and that you get the opportunity to say yes more often than no.
ReplyDeleteThank you so much for posting this. It is so comforting to know that someone else suffers from this. I have zero control over my body and am so hesitant to make plans. I wanted so badly to go to family dinner on Sunday but couldn't. It broke my heart
ReplyDeleteBreaks my heart! I completely agree with Anne- you have to let that guilt go. (I mean, yes- easier for me to say, but still.) It's so much more important to listen to your body and to take care of yourself. (( HUG )) My mom always said, "it's okay to say NO." And it is. No one can always be a "yes girl" - as much as we gals feel like that will make people happy - illness or not, that is a quick road to burning out!
ReplyDeleteI know exactly how you feel. You are right that the guilt is a lie, but it doesn't make me feel any less guilty. Making plans in advance is nearly impossible, which breaks my heart. This year, on my birthday, I realized how sick I really was when I was all ready to go out and celebrate by seeing my favorite singer, who was in town, and my husband looked at me and asked if I could really do it. I remember breaking down and bawling on the stairs because I'd put so much energy into getting ready and working earlier that day that I just couldn't do it.
ReplyDeleteIt's so important to share with people that when you say no, it's because you physically can't--and that you're more sad that you can't go than they are that you said no. Thanks for writing this!