What advice do you have for other couples trying to talk about MG?
Kathy: It takes such a burden off of me when people understand the fatigue and make it easier for me to live life the way I need to, when they don’t try to convince me to do things I can’t or make me feel like I am losing out on something.
Diane: We’ve developed this thing we call ‘kind confession.’ It’s where we give each other permission to voice difficult feelings to each other, as long as we do it in a compassionate way. With kind confession, I don’t have to just silently have these feelings. I can say things out loud like, “I'm feeling sad that you can't go to this event with me.” And Kathy can admit when she’s not feeling well and really wants me to go and have a good time without her.
With kindness, you can discuss sensitive subjects, like household chores, without fighting or silent resentment. Caregivers deserve to be able to ask for things from their partners who have MG, even though they might worry it’s going to be too much. You can have faith that your partner is a grown person and can say no. You don’t have to assume that they can’t do things. It's okay to ask.
If you trust yourself and your partner, you can get to those vulnerable feelings behind the frustration. You can take the blame out of it. MG can be the bad guy instead of the person who has it or the person who loves them.
We still have our struggles. I don’t always remember these things when I'm really tapped out. Sometimes I react like a wife, not like a psychologist. But we can talk about everything. That's one of the best things about our relationship.