Even at my best, there’s not enough energy to go around. And then I had a medical crisis five months ago and the recovery is still ongoing. My energy level has been halved and there simply isn’t enough left for everything I need to do. I couldn’t attend the funeral of a friend’s mother. I don’t see my own mother as often as I’d like to, or spend time with my friends, and I’m hopelessly behind on some pretty important work projects and life tasks.
And the guilt is overwhelming.
I’m not alone. So many people in the chronic illness community feel guilt over all the things we can’t do – guilt because we have to say no to doing things with our kids, our families, our friends. Things we used to be able to do, things we want to do. But our illness – the pain, and the fatigue – means we can’t.
Knowing that I am not alone is theoretically a comfort. I can try to persuade myself that this many people can’t be wrong. That the fact that we are all feeling such guilt is a pretty big sign that it has something to do with our chronic illness, rather than being a failure at relationships and maintaining our lives.
Honestly, though, that knowledge doesn’t make the guilt go away. When you hear the disappointment in your loved one’s voice as they say they understand, or are sitting at home when you should be at a funeral mass, the guilt is sitting there, too.
I have decided that banishing the guilt entirely is not an attainable goal. At least not right now. Instead, I am working on minimizing the guilt by asking myself the following three questions.
Are my priorities right?
So many of us who live with chronic illness are frustrated Type A people. The desire to do a lot blends with the guilt, driving us to give everything we have to our work. Granted, work is important: the ability to pay for your medications and a roof over your head is awfully helpful when coping with chronic illness.
But I like to remind myself that should I get hit by a bus tomorrow, work might miss me, but my employers would replace me. My family and friends can’t replace me. Finding a way to balance where I give my energy makes sense for my soul and my heart. As a bonus, giving more of my energy to the people I love also reduces the guilt.
Is guilt an appropriate feeling in the situation?
Guilt is a sign that you have done something wrong. When I feel guilty for not being able to do something, I try to remember that not being able to do this thing because of my chronic illness is not a terrible act.
Guilt is an appropriate feeling if you’ve deliberately hurt someone, or shoplifted, or done something else illegal or immoral simply because it gave you a rush. Being in too much pain to go for a hike is not the same as consciously doing something wrong. Remembering that can help chip away at the guilt.
Is my list attainable?
There is so much to do in a life. Everyone I know is getting busier and wishing for a magic wand to slow down time. I looked at my To-Do list for today and it has 11 items on it, three of which will take several hours each. Not even the healthiest person would be able to do everything on my list. Setting attainable goals is a big part of managing pain and fatigue.
It can also be applied to managing your guilt. I once read about a time management technique used by Mary Kay (yes, that Mary Kay). Every day, her To-Do list would contain six items, the most important things she had to do in order of priority. When the list was done, so was she. Every now and again, I remember to use that technique. Even when I don’t get half (or any) of it done, it’s a reminder that cutting myself some slack is part of the self-care I do for my chronic illness. And that makes me much happier.
If you’ll excuse me, I’m off to put six things on my list for tomorrow. Or maybe I’ll start with three.
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Lene writes the award-winning blog The Seated View. She’s the author of Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain and 7 Facets: A Meditation on Pain.
Lene Andersen is the Community Leader for HealthCentral’s RA Community. Lene (pronounced Lena) is an award-winning writer, health and disability advocate, and photographer living in Toronto. She’s written several books, including Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain, and 7 Facets: A Meditation on Pain, as well as the award-winning blog, The Seated View. Follow Lene on Twitter @TheSeatedView and on Facebook. Watch her story on HealthCentral.