I always say, our day here is not complete if we did not cry and laugh at least once. But there’s something else we seem to do on the daily… talk about guilt. It is an emotion almost all of our patients and their loved ones share in some form or another. It doesn’t really matter whether the feeling is rational or not, it seems it is always lurking, ready to consume us. Most of us know it is destructive, and ultimately pointless, yet here we all are, feeling it by the truckload.
The way I understand it, is that guilt is an emotion which bubbles up in us when we believe we’ve done something wrong, failed to meet our own standards, or violated a moral or ethical code by which we live and expect others to live by too. It is linked to what makes us human; instinctive knowledge we carry in our DNA about what is right and what is wrong. It’s logical that this is what partly enables us to live in a functional society (okay, semi-functional… it could be worse)
Rational guilt has a social purpose, but what happens if you feel guilt that is not rational? Why do we feel this horrid emotion when it is not based in truth? How do we work with cold logic when we have these terribly irrational, emotional souls? I sit in my office all the time chatting to children of patients about how guilty they feel. This week, Linda sat here and wept (I have stopped wearing mascara by the way, as by 10am it has been cried off. Dolly Parton won’t let people cry alone, and neither do I! ). Linda’s mom has multiple myeloma (a fancy word for bone marrow cancer). She is young and has a good chance of recovery if she can get strong enough to receive chemo, but there are never-ending infections and setbacks, which is unfortunately the usual trajectory for this disease. Linda’s mom was in hospital for a very long time, and due to neglect, she developed a pressure sore. This was so totally unnecessary, and has added suffering to an already difficult journey.
Linda feels guilty that she didn’t check up on the nurses and that she didn’t go visit her mom more often (She visited her twice a day, how many more visits could she have made?). She feels guilty that she simply cannot look after her mom at home and that she had to bring her to us for care. Not one of the things she feels guilty about, and that suck the marrow out of her bones, makes any logical sense. The fact that her mom is sick is no one’s fault. Linda is not responsible for the nurses not looking after her mom in hospital and it’s definitely none of her doing that her mom is too weak to receive the only treatment that has a chance of making her better. She feels guilty that she already lives a typical jampacked JHB life: she works a fulltime job while juggling two kids, a household, school runs, all while trying to eat healthily, exercise, buy groceries, attend functions, try and do something for the community, phone that friend and find time to post an Facebook moment once in a while. There is hardly time to look after a mom with a cruel and untimely illness. And the worst is, while she feels bad that she doesn’t visit enough, she also resents the hours she spends in traffic coming to see her… and then proceeds to feel guilty about that too. It’s a spiral of constant guilt. Like Erma Bombeck said, “Guilt is the gift that keeps on giving.”.
On the other side of the coin, we experience and deal with the patients’ guilt, but as I am typing this blog, I realise, that they don’t just feel guilt. They are often the lucky winners of shame too. Where guilt can still lead to constructive or reparative actions, shame simply destroys our innermost beings. Patients know what their loved ones have to sacrifice. They feel guilty about the time spent visiting them, or that their illness upsets their grandkids. I am asked every week by people, with days to live, what the daily rate is because they do not want to be a financial burden on their families (even if medical aid pays) or they feel ashamed that they fall asleep during visits or when they simply don’t have the energy to engage. People feel ashamed that their bodies are not instagram ready or that they’re not able, through no fault of their own or others’ to “live their best life now”.
We have a young patient, Taryn, who is in her 30’s. She’s beautiful, clever, funny and graceful. She has a complicated illness requiring an even more complicated treatment regime. Her road to recovery is filled with so many obstacles that I could not explain it in ten blogs. Every time she needs to extend her stay because her recovery is slow, she comes to apologise to me. She feels ashamed that her body has let her down. She has done everything right. She eats clean, exercises, meditates, doesn’t drink, and yet, she is so terribly ill. She keeps on trying to figure our what she’s done wrong to end up in this condition. . If only life were that simple and transactional. Sadly, what we put in is not always what we get out. We are not in control of the cards we are dealt. All I can do for Taryn is to love her, and to continuously assure her that she is not a burden or a failure.
I wish I knew how we could feel less shame and guilt. Maybe we can be gentler with ourselves and learn to free ourselves from unrealistic expectations? Perhaps we can cultivate empathy and compassion, not just for others, but also for ourselves? We have to learn to free ourselves from the burden of thinking we’ve got to be everything for everybody and perhaps allow ourselves some grace as we remember that we are all really here to help carry each other home.