Chronic Sorrow: A theory of loss that applies to many families
Back in the 80’s, I was supporting people with learning disabilities in a residential respite home. A mother arrived to collect her son after his stay, and when I apologised that we’d lost one of his socks I was knocked sideways by her furious verbal assault, which seemed to me to be disproportionate. My supervisor explained this was because parents of people with disabilities are angry because of grieving for the ‘perfect’ child they had expected to have. I remember thinking the issue was probably more complex, especially as I knew many parents who were as positive about – and loving towards – their disabled child as they were their other children. When I heard about Chronic Sorrow nearly two decades later, an important piece of the puzzle fell into place.
Ongoing, multiple losses
The term ‘Chronic Sorrow’ was coined by Olshansky in the 1960’s, who identified that some parents of children with disabilities experienced ongoing and recurring grief. For thirty years the theory remained largely unexplored and undeveloped, with occasional research indicating it might also apply to other groups, e.g. people with life-limiting conditions (such as long term Mental Illness; Dementia, Multiple Sclerosis, HIV/AIDS) and their families; adopted children; and families of children or adults who are missing.
Susan Roos developed the theory, calling it a ‘living loss’, because the source of the loss continues to be present. Many individuals and their families experience multiple, recurring losses. These may be practical (e.g. time, sleep, routine, skills, education, transport, job and income), or less tangible (e.g. hopes, dreams, identity, privacy, dignity, control).
These losses are compounded and magnified by attitudes and barriers within society and services causing stigmatisation, labelling, discrimination and deprivation of rights, leading to further losses (e.g. inclusion, relationships, social networks, opportunities).
I knew an inspirational Head Teacher of a Special School, who – when her daughter was born – had exclaimed:
“Oh! She’s got Down’s!”
All the professionals avoided eye contact and the room emptied quickly. She and her baby were placed alone on a side ward, away from other mothers and babies. When she chose to go into the ward, chat to Mums, and stroll into the main hospital to stretch her legs, she was followed by a nurse, and told to remain on the ward. Eventually she sought explanation from a Doctor, and it transpired that many assumptions had been made – all of them wrong – without reference to her. They had assumed she would be grieving, would not bond with her (beautiful) baby, would not wish to see other mothers (with their ‘perfect’ babies), and might do something to harm herself or her child. She was hit hard by the realisation that society’s attitudes had transformed perceptions of her overnight from that of a respected professional to a prospective suicidal child-murderer.
Definition of Chronic Sorrow
Roos calls Chronic Sorrow
“…a set of pervasive, profound, continuing, and recurring grief responses resulting from a significant loss or absence of crucial aspects of oneself (self-loss) or another living person (other-loss) to whom there is a deep attachment.”
Chronic Sorrow can sometimes trigger depression, but differs from depression because it is periodic and self-limiting, and a person’s daily functioning is not affected markedly.
People are more likely to experience the pain of Chronic Sorrow if there is a significant impact upon their identity, if they feel they have many ongoing losses, or if they perceive a wide gap between reality and their dreams.
Parents and family carers are more likely to experience Chronic Sorrow if they perceive their relationship with the individual they care for as problematic (e.g. if it’s hard to bear that their child does not reciprocate eye contact or affection; if a cared-for adult also has Chronic Sorrow and directs anger or blame towards their carer; or if people are in the caring role out of a sense of duty, rather than love).
Triggers hasten sudden intensification of grief. It’s important to stress that triggers are individual, but common triggers are family occasions, seeing a child the same age, hospital admissions, change in condition or treatment, introduction of new aids and adaptations, reminders of lost skills or opportunities. Some triggers can be anticipated (e.g. birthday parties, review meetings), and preparation can help reduce their impact. The emotional impact of unexpected triggers can be harder to manage.
The anticipation of possible future losses sometimes intensifies or triggers sorrow, for example if an individual has a progressive condition they and their family will fear for the future. A father of a young woman (who had multiple disabilities and complex health issues requiring frequent hospital treatment) broke down in a planning meeting, saying “How can I discuss plans for next year? It’s hard enough thinking how we’ll get through next week!”
Family carers I’ve trained in Chronic Sorrow commonly express relief at recognising it as a normal grief response, and from identifying losses and triggers and action planning to minimise their impact.
Chronic Sorrow, Loss Theory and Best Practice
Theories of loss have changed over the decades. Thirty years ago it was common for individuals to be viewed as pathologically dysfunctional if they did not progress through Kubler-Ross’s stages (Denial, Anger, Bargaining, Depression, Acceptance) in an orderly fashion, within a certain timescale.
Nowadays grief is more ‘normalised’. It is regarded as arduous, chaotic work, the stages have been updated and are broad guidance only, allowing for flexibility and variation in individuals’ responses. ‘Denial’ is often considered to be negative, but can be used positively, enabling a person to get through a particularly difficult period. It is also acknowledged that – in some instances – it may be ambitious to expect ‘Acceptance’, and that ‘Adaptation’ might be a more realistic goal.
Sadly not all professionals and organisations have current knowledge, and they do a grave disservice to individuals and family carers when failing to recognise and appropriately respond to their multiple, ongoing losses and grief responses (marginalised groups are known to be vulnerable to experiencing this ‘Disenfranchised grief’) (Doka K.J. 2002). As a result, there are often no organised or available systems to support individuals and their family carers specifically with recognising, understanding, and coping with their Chronic Sorrow.
1. Olshansky, S. (1962) Chronic sorrow: A response to having a mentally defective child. Social Casework, 43(4), 190-193.
2. Roos, S. (2002) Chronic Sorrow: A Living Loss. Brunner – Routledge: New York and London
3. Kubler–Ross, E. (1970) On Death and Dying Tavistock: London
4. Doka, K. J. (2002) Introduction. In K. J. Doka (Ed.), Disenfranchised grief: Recognizing hidden sorrow (pp. 3-11), Lexington, MA: Lexington Books.
About Rose Harwood
Rose managed services for children and adults with disabilities, and trained staff for 25 years before setting up Learning Disability Training in 2006 to facilitate courses on a variety of topics, including Chronic Sorrow. She is also an Associate at Paradigm and at Health & Care Inquiry Associates (HCIA). Twitter: @RoseHarwood1 http://firstname.lastname@example.org
© Rose Harwood 2013
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