Imagine suffering from a chronic illness that challenges you every single day. You have aches and pains, difficulty getting around and sometimes suffer from surprising decreases in energy. You take fistfuls of medication for relief and endure countless medical procedures to keep the illness from progressing.
The illness might be physical, such as diabetes, chronic fatigue syndrome or arthritis. Or it might be emotional or psychological, such as anxiety or depression.
Either way, might your life be better if you stopped hoping to cure your condition and simply accepted things as they are?
“Sometimes knowing the adversity you face is permanent makes it easier to face that adversity,” said Dr. Peter A. Ubel, a professor of medicine and psychology at the University of Michigan and director of the university’s Center for Behavioral and Decision Sciences in Medicine.
Ubel co-authored a study that found that people who’d had a colostomy surgery that creates an opening in the abdomen for stool to drain from the body but could have the procedure reversed in the future experienced no improvement in life satisfaction over time. But, people who had irreversible colostomies reported increased satisfaction with their quality of life.
It’s not a conclusion that’s been universally embraced, however. Dr. Ann Berger, chief of pain and palliative care at the U.S. National Institutes of Health Clinical Center in Bethesda, Md., said she believes the finding from the colostomy study only scrapes the surface of what a patient needs to undergo to experience healing from a chronic illness.
“Acceptance is only a very small part of ultimately developing a sense of wholeness in healing from a chronic illness,” Berger said.
The study involved 71 colostomy patients, including 30 people with permanent procedures and 41 with reversible procedures. They were all quizzed about their quality of life one week after their release from the hospital and again one month and six months later.
Even though both groups of people had the same disability, those who knew their condition was permanent adapted better to their situation over time, Ubel found.
He believes a couple of factors are probably at work here. First, people who hope for a cure that may never come will grow frustrated over time when there is no improvement in their situation.
“Happiness is not just a matter of circumstances, but also how circumstances compare to your experiences,” Ubel said. “If you continue to hold out hope that things will get better, you will feel more frustrated.”
Also, Ubel explained, people holding out hope will experience a great deal of “Weltschmerz,” a German expression referring to the pain people feel when comparing how life is to how life should be.
“If I’m hoping for something better, then I continually compare my current lot in life to what it could be, and the contrast hurts,” Ubel said. “People who have a temporary condition think, ‘Why do I have to live with this? I want to be better.’ People with a permanent condition think, ‘Things aren’t perfect, but these are the cards I’ve been dealt.’”
Berger, on the other hand, thinks people should view the findings from the colostomy patients’ experiences “with a grain of salt,” in part because the results stem from a small group of study participants.
But in addition, a range of life factors can affect how people deal with a chronic illness, including their psychological state before the illness, their social networks and support systems, and their sense of spirituality, Berger said, and none of those factors were considered in the study.
“A lot of it has to do with people’s sense of: ‘I have a place and worth in the world. I’m safe and taken care of. I have plans and expectations for my life. I have control over things in my life. I have some kind of secure inner peace,’” she said. “These are things that go on in someone’s inner psyche and help in the healing process.”
If people have support and a sense of spirituality, she said, they may not be cured but they can be healed. “You need to look at curing versus healing,” Berger said. “Cure is cure of an illness. Healing is a feeling of wholeness of an individual.”
And the notion of “giving up hope” is flawed, she said.
“I don’t think that you necessarily give up hope,” Berger said. “When you are chronically ill, you may hope for other things. Hope just changes so that rather than hoping for a cure, you hope to get to somebody’s wedding or you hope to see the sunset the following day. You don’t hope for the same things as hoping for a cure. That’s not losing hope. It’s very different, and they can still feel healed.”