When your partner is a spoonie, guilt is an inevitable part of your relationship, for both of you. Your partner feels like they have let you down when they cancel plans. Or they might feel guilty for not being able to help as much around the house. You feel guilty for having fun without them. Or you feel guilty because you still have your health. There may even be times where you feel guilty for pushing them to attend an event when you know they aren't feeling well. So much of our guilt is self-imposed. We place many impossible standards on ourselves and then berate and belittle ourselves when we fail to measure up. So how do you get past it?
It's not easy, by any means. As I discussed in my previous post, you need to have one or more backup plans if you want to keep your sanity. My partner Nick and I have an agreement of sorts when it comes to keeping and making plans. If he is not feeling well enough to go anywhere, the general rules are something like this: for an event with his family, neither of us will go; for an event with my family, I will still go as much as possible; and for an event where advance tickets were purchased, then I usually try to find someone to go with me or give away our tickets. There are some times when Nick will push himself to attend an event, even if he is not feeling well, but this only comes about for once-in-a-lifetime events, like a graduation or a wedding. One of the most frustrating aspects of fibro is its sheer unpredictability because of symptoms that can change on a dime.
Another trick I like to use is to set my spoonie up for success whenever possible. This means that I try not to schedule back-to-back events or more than one event in a day, and I also try to choose activities earlier in the day when he is likely to have a little more energy. I don't want him to feel guilty or stressed for cancelling on me, and the easier I make this on him, the less guilty I feel for doing those things without him.
We talk about these kinds of things as they come up, and it sometimes takes a bit of planning ahead. For instance, if I tell Nick that we have somewhere to go on Saturday, then he has to try to take it easier in the days leading up to it, in order for him to feel as good as possible. If you find yourself wondering why your spoonie can often be anxious when it comes to social events, put things in perspective, and you might understand a little better. When was the last time you felt like going to your cousin's birthday party when you had the flu? You can imagine how difficult it can be to put on a happy face and be engaging at a social event when you have very little energy and everything hurts.
I would be lying if I said I don't get disappointed from time to time. However, my disappointment is not directed at my partner but rather at his chronic illness. I find it more helpful to look at the illness as your enemy instead of your partner. There really is no way to get rid of the guilt - it will show up time and again. It comes down to changing your perspective and focusing on the more important things in your relationship and in life.
Remind yourself that your spoonie did not ask for a chronic illness, and the both of you are trying to do your best. That's really all you can ask of someone - to do their best. We're going to make lemonade and work with what we have.
