Reading through the 3 Things the Chronically Ill Want Their Loves Ones to Know, one in particular stood out to me, because it’s the one that is most true for me.
“ We can feel as if we’re letting you down even though you’ve repeatedly told us that we’re not.”
– 3 Things the Chronically Ill Want Their Loves Ones to Know
I’m not a fan of being disappointed. Who is? Having your heart set on something only to not be able to have it. Making plans for the weekend only to wake up dead on Saturday morning. Sure there are times when we push through it, because… reasons. But, too often we have to cancel plans, or leave everyone hanging, scheduling everything on a tentative basis.
“Hey, ya wanna do something Saturday?”
“Sure, but I don’t know how I’ll feel, so can I just say maybe?”
Those closest to us may get it. They understand that we don’t know how we will feel from one day to the next. But, even so they may be left disappointed. Even if they get it, often it’s hard for me to accept it myself. I had my heart set on doing something.
I don’t know how much money we’ve lost to tickets purchased that we couldn’t use because I was feeling too bad. And, travel insurance does no good at all because it only applies to non-chronic situations typically. Typically, you won’t get your money back if the problem is something that you were dealing with prior to the ticket purchase. Even if they will accept it you have to get a doctor to sign off on all their paperwork. Good luck with that. As I sit here right now we have two months left to use the credit from the plane tickets we purchased last year for the trip we had to cancel in January. I got lucky on that one. Our trip also coincided with the ice storm in Atlanta that would have affected our flights, so we were able to get full credit, instead of losing half our ticket price to “cancellation fees”.
No matter how many times my husband, my friends, or my mom say they understand when I have to cancel. I will still feel like a disappointment. Why? Because I’m disappointing myself. They aren’t the only ones I’m letting down. This is something I’m constantly working on. I know it has a lot to do with perspective, and I need to change the way I’m thinking. When it comes to dealing with disappointment, there are a few things I tell myself:
- Control What I can – I think I should be able to do it all and I often say yes when I should say no to start with. If I look at my schedule and I know it’s packed out already. Or if I’m looking at the weekend and I know I have a test on Monday, I shouldn’t make plans in the first place. That doesn’t mean that when Saturday rolls around if I’m feeling good and I’ve gotten done what I need to do that I can’t go out. I just shouldn’t make plans in advance in those situations, tentative or not.
- Stop Projecting – If I’ve controlled what I can to keep myself from being disappointed then I’ve also done what I can to prevent others from being disappointed. In that case, if they are disappointed it’s not my fault. Often, they aren’t disappointed I am, and I’m projecting my feelings on to them.
- Be Honest – It’s ok to say “I’ll let you know later” , “make plans without me” , or “I just don’t know right now”. Just be honest with where you are at at that moment. Don’t leave your friends or family hanging, waiting on you to make their own plans. Be honest with your needs and understand that they will need to make plans without you occasionally.
- I Am Not Responsible For Their Feelings – As long as I’ve been honest and I’ve done what I could to control what I can, I am not responsible for their negative emotions. Getting caught up in their negative emotions will only make me feel more negative, add stress, and increase my pain and fatigue. It’s futile and counter-intuitive.
All that said, if you are doing what you can to reduce the disappointment of others (and yourself), and you have people in your life that continually express disappointment in how your life is affecting them, it may be time to remove those people from your life. This is just one form of energy vampire that we encounter. Surround yourself with loving people, people who make the effort to understand, people who while they may occasionally be disappointed in how your health affects life, understand that you are doing all you can to control what you can. They get that you are being honest and that they are responsible for their own emotions, not you.