Tuesday, January 17, 2012
Chronic Sorrow I: What it Is & Who is Affected ...
Early this week, I received two emails from family carepartners asking for more information regarding Chronic Sorrow (CS). As a result, I've decided to expand an earlier post over the next three blog posts, focusing on three particular areas - what CS is and who is affected, the characteristics of CS, and how to live with CS more comfortably. I hope this series will help to normalize the experience of family care-givers and to broaden the understanding of those who support them.
What Chronic Sorrow Is
Chronic Sorrow is the natural, yet often unrecognized or misdiagnosed, recurrent and continuing grief that can be experienced by people with permanent impairments and those who love them. It is my hypothesis that it is also one of the factors (along with primary traumatic stress, secondary traumatic stress, burnout and moral distress) contributing to compassion fatigue in family caregivers.
Many family caregivers describe CS as an ever-present foundation of sadness underlying the ups and downs of everyday life. The sadness sometimes hovers outside our awareness and at other times we are plunged deeply into its intensity, triggered by a new loss, an anniversary date, a missed developmental milestone, a family celebration, an awareness of others' "healthy" lives, or the illness or injury of another loved one.
CS is, essentially, ongoing grief over a continuing living loss. It doesn't resolve over time but lasts, with recurring intensity, until the death of the care recipient. At its core is the aching discrepancy between life as it is and life as it should or could have been.
What Chronic Sorrow Is Not
CS is neither a type of bereavement, complicated grief, nor clinical depression though it will eventually lead to bereavement, and can be the forerunner of complicated grief or depression.
Unlike bereavement, CS is continuing grief about the condition of a living person, grief that does not diminish or lighten over time.
CS is usually pervasive, affecting more areas of our lives than complicated grief. Almost no aspect of life is untouched by CS whereas, in complicated grief, it is likely that the sadness arises from a more discrete aspect of the loss.
CS differs from clinical depression in that the CS sufferer, with a history of a continuing living loss, usually remains relatively functional, lacks biological symptoms like characteristic sleep disturbances, and generally recognizes when he or she has crossed the line into depression.
People with CS also tend to have a range of spontaneous feelings and the ability to express those feelings in their relationships. Their sadness is intermittent and often situationally influenced rather than arising from a consistently depressed mood. Most retain the ability to experience appreciation, gratitude and pleasure, sometimes more than the average person due to the exquisite perspective that can come from companioning a loved one at the edge of life.
Who is Affected?
The concept of CS was introduced in 1962 by American social worker and child advocate, Simon Olshansky, to describe the normal grief responses of parents to their child's severe developmental disability. His compassionate description of their sorrow came at a time when, according to American psychologist, Susan Roos, "... the professional community...often viewed them as difficult, morose, neurotic, self-pitying and unaccepting of their child." Since then, the term has been expanded to include people with a variety of chronic conditions and their family and friends.
Even more recently, (while trying to guard against overuse of the term), mental health professionals have included in this category others suffering a continuing, living loss. These others have included families of MIA's, POW's, runaways, the kidnapped, and the adopted in closed adoptions. Here, families have been left with an ongoing grief and uncertainty regarding their loved one's location and condition.
Now, CS is not found in all families where there is a continuing living loss. For example, in some belief systems and faith traditions, people believe that whatever happens in life is "fate" or "God's will". In such cases, they don't experience the core discrepancy between how life is and how it should or could have been - life is how life was meant to be - and, thus, they don't experience the ongoing grief in the same way.