By Laurie Edwards
Guilt is one of the predominant emotions that accompany chronic illness. Certainly it waxes and wanes, but it is inescapable. In my experience, it’s the ways in which my illness impacts those around me that is the cause of much of my guilt. And from the patients I spoke to when I wrote my book, Life Disrupted, and the conversations I’ve had on my blog, I think that feeling is pretty universal.
There’s the guilt I feel when I have to cancel on friends yet again, or cannot be there for them when I’d like to, or need to rely on them for more help than I’d like. There’s the guilt during periods of particularly serious illness, when it feels like things are so one-sided, and I am taking a lot and I do not have a lot left to give.
I’ve written a lot about the guilt involved in marriages with chronic illness, and the toll invisible illnesses take on those who live with us and care for us. I am so grateful for all the ways in which my husband supports me (physically, emotionally, etc.) and for all the compromises and accommodations he has made over the years because of my illnesses. But, of course, I wish he did not have to do those things.
When I was pregnant, I experienced the anxiety that comes with a high-risk pregnancy, and the preemptive guilt I felt when I worried that something going on with my body would somehow harm my baby. Every non-stress test, every biophysical profile, every appointment and blood test and hospitalization was tinged with that, and literally not a day goes by where I am not grateful that she is here, and she is safe and happy.
But now that she is here and growing more alert and aware by the day, there is yet another permutation of guilt, because I am starting to see the ways in which my illness affect her. So far, the impact is minor, but I hate it when, for example, I am having my daily chest physiotherapy and she is in her bouncy chair next to me and needs me and I cannot give her what she wants. She doesn’t understand why, and I hope she is not confused as to why I leave her there. This is just one small example, and I know intellectually she is fine, but in the moment I hate it so much.
I am sure the older she gets the greater the stakes will be, and the things I might have to miss or might not be able to do are things she will notice even more. But I can’t worry about that now; that is not productive for me and it doesn’t do her any good. All I can do is give her my best on my good days and especially on the more difficult ones.
The closer we are to people and the more they mean to us, the more they shoulder when it comes to illness; the more our bodies’ idiosyncrasies and problems become theirs. It is so easy to let guilt over illness consume us or to overly define relationships and attitudes, but my health issues are but one part of me. Therefore, they are only a piece of the relationship I have with my daughter, my husband, my friends and family. If I remember that and keep things in perspective, it makes it better for everyone.
(If only it was as easy as that, huh?)