I called my mother on Monday of this week. I was feeling pretty crashed (I really shouldn't make phone calls in the afternoon, my low time of day) and perhaps a bit cranky. She was her usual cheery self. At one point when I was saying something about my illness, she gushed, "Oh, but you are doing so much better these days! And so is Jamie!" I got really irritated, feeling like she wasn't listening to me, thinking, "After 10 years, how can she still not understand how sick I am and how much I struggle every single day?"
Now at this point, most of you are probably right there with me, feeling that sense of indignation so common for all of us with this nasty invisible illness, feeling misunderstood. But guess what? I was wrong.
After stewing about the conversation for a day (and waking up in the middle of the night, too), I decided I needed to talk to my mom about it. She and I are close, and early in my illness, we'd gone through some very rough times. I knew from past experience that if I held my feelings in, I'd just get more bitter and resentful toward her, and I didn't want that to happen again. I knew she'd probably be defensive, so instead of calling, I wrote a short e-mail note. That also gave me plenty of time to carefully think about what I wanted to say - I didn't want to blurt out anything I'd regret. I sent what I thought was a very tactful note, telling her that some of the things she'd said had made me feel like she wasn't listening and didn't understand.
She called me immediately. Much to my surprise, she gave me a bit of a mild scolding! At first, I thought she was just being defensive, but I listened to what she was saying "I do understand. After 10 years, I understand very well just how sick you are. I have seen you lying on the floor on Christmas Eve, with your face beet-red. I have seen Jamie visiting here, too sick to get up off the couch all weekend. I know exactly how bad things are and how hard it is for you to do normal things. I get it."
She explained that she was just trying to look on the bright side, as is her norm (and mine - I learned my positive attitude from her!), trying to be positive and bolster my spirits. She told me that a close friend of hers has cancer and has specifically asked her friends not to talk about her illness and to be extra-positive around her, so she was just doing the same with me.
Finally - and this is the part that really hit home - she said, "I think that you are so used to being misunderstood by people, so used to people not knowing how bad things are, that you just automatically assumed that it was the same with me."
I thought about it and realized she was absolutely right. I was being extra-sensitive because of both feeling poorly and, as she surmised, assuming that she, like everyone else, just didn't get it.
Even though this was a minor misunderstanding, I wanted to share it with you because I think we probably all do this sometimes - assume the worst, even from our close loved ones, because we are so used to being ignored and misunderstood.
We all know that misperceptions are rampant with ME/CFS - it's just being tired, it's not that severe, etc. - but this time it was my own misperceptions and misunderstandings. This really gave me something to think about.
The second lesson, of course, is that it is always better to get feelings out in the open (in a loving, kind way), rather than to let bad feelings simmer and fester. That is a lesson that I seem to keep re-learning!