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.



toni said...

omg.....you just described me...my adult son has a severe tbi

Jan Spilman, MEd, RCC Compassion Fatigue Specialist said...

Hi Toni, Thanks for commenting. I hope that seeing yourself here will help you and your loved ones to understand this part of your emotional experience. Warm regards, Jan

Lisa said...

A link to your article was posted on our (Military)Polytraumatic Injury Family Support Facebook page. I found myself devouring your words. Sometimes I feel so guilty that I can't just accept my son's "new normal" after his TBI, but it's just so hard. When he struggles, I struggle. I've been told that I should "just be grateful that we have him." Well of course I'm grateful for that! But it's nice to have permission to admit that sometimes it just HURTS. He can't remember if he ate an hour ago but he surely remembers being able to live on his own, to drive, to date, and to dream of a future with a wife and children. He's losing hope for that future and watching him bravely try to accept that is a bitter pill indeed. We laugh, we joke, and we have fun, but oh, how my heart aches. Thank you for helping me feel better about myself.

Sparkles said...

Thank you so much for sharing this article. I know many hospice workers, home health nurses,children taking care of aging parents, and unfortunately more then I care to admit parents taking care of children that live with this daily sorrow. I will be sharing this with many friends, family, and workers.

Jan Spilman, MEd, RCC Compassion Fatigue Specialist said...

Dear Lisa, Thank you for your honesty about an extraordinarily painful time. I think there is a difference between expecting ourselves to "accept" the totality of our circumstances and accepting the person of our loved one. We have a lifetime to do the former and most of us will continue to feel some pain and sadness from time to time throughout that lifetime. Every blessing to you and your family as you journey together, Jan

Karen said...

My husband suffered a mTBI and has severe and persistent PTSD from explosions in Afghanistan. Even though I've learned to talk more slowly, stop talking when there is too much noise (many times daily), not put pressure or stress on him, remind him of every little task of daily living, help him organize his thoughts/projects/space, the list goes on and on and on (he needs to have care 24/7)there are many times that I feel so alone. The man who was my partner, friend, and lover is not here. I don't really know yet how to have a new marriage. I am pretty much constantly fighting depressive behaviors as a way of coping with my loneliness.

Jan Spilman, MEd, RCC Compassion Fatigue Specialist said...

Hi Karen, I'm sorry things are so hard right now. The loss of your old relationship is a profoundly painful one. It sounds as though you're doing an amazing job supporting your husband but perhaps could use some support for yourself. We humans need support in order to grieve well. A grief /trauma therapist might be helpful. (I would ask him or her to read Susan Roos' book, Chronic Sorrow: A Living Loss.) Another good source of support for TBI spouses is Barbara Stadhura's website, Journal After Brain Injury. She's lived the journey you're walking and is a wise and compassionate mentor. Warm good wishes to you both as you learn to live this new life together, Jan


Thank you for putting a name on what lives at the core of my being. My 40 year old son is schizophrenic, he has lived with me much of the time sometimes hospitalized (over 75 times), like now sometimes in a board and care home. Mental health care is minimal at best here in San Diego Ca, He has often been at risk - and i fear the police who are quick here to shoot unarmed mentally ill people, more than i fear criminals. Part of the time my son thinks i am an evil alien who stole his mother's body. He visits 1-2 weeks a month and mostly after repeated bouts of paranoia, he doesn't like me very much, quick to tell people i am not his real mother, and disturbed as he can be social workers and others involved in his care plainly chose to believe it and are reluctant to involve me in his care.
Few people understand how his lifelong continuing disability and unhappiness effect a person who loves a child deeply through it all.With all the medicine he doesn't get better. Thanks for speaking about the sadness that permeates celebrations, the grief for lost possibilities, the envy for people who have "normal" family times even if not perfect, lives that aren't so very limited. When a child is mentally disturbed there is a tendency to think the mother in some way failed, caused the condition or is somehow crazy too.
Thank you from Momma Bear aka squeaky wheel