Chronic sorrow by Rose Harwood

Chronic Sorrow: A theory of loss that applies to many families

Rose Harwood picBack 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.

References:
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://www.learningdisabilitytraining@fsmail.net

© Rose Harwood 2013
This article is copyright protected. It is made available to the #CareToShareMag without charge for personal use only. It may not be stored, displayed, published, reproduced, or used for any other purpose without prior and written permission from Rose Harwood

Care to Share Magazine volume 1 issue 1

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22 thoughts on “Chronic sorrow by Rose Harwood

  1. Thankyou Rose. I found this article really interesting and it did make sense of a few of my past experiences too. I can think of several people I’ve worked with who would benefit from reading this little article. So would some of the people they work with.

    Many thanks,

    Stuart

  2. Gosh, what an insightful article – I’ve known many parents(and professionals) who would recognise the grief associated with diagnosis, but as time passes perhaps the term chronic sorrow would be more apt.
    Those dreadful times when you feel you have been emotionally run over by a bus (again), filling in DLA forms; school events; family occasions; the insensitive comment when you thought your child was doing so well not actually having a meltdown in the queue at the supermarket checkout – all triggers for chronic sorrow.
    Thanks for posting.

    • Thanks for your comment. It can be painful to hear about Chronic Sorrow, and can take time to process the information. I do hope you look after yourself, and please feel free to contact me should you want to discuss what strategies other parents / carers have found helpful. x

      • Yes. I call the deep sense of loss a living bereavement. However I’m grateful for and appreciate every day with my son who is beautiful in every way. even with the challenges his disability brings

  3. Thank you for this wonderful article. It resonates with me and I now understand why my antidepressants only “work sometimes”

  4. So glad to read this. I’ve never come across this before. I had/have definitely had/have both. It was only my daughters last birthday that I hadn’t let off a balloon with a message on it saying “happy birthday” on it to my “other” normal child. Things aren’t any easier but maybe I’ve found acceptance xx

    • Thanks for your comment Michelle, I hope reading the article has helped to ‘normalise’ your grief. You are always welcome to contact me (see previous comment above). I hope life does get easier. Perhaps in time the unexpected triggers may lessen and you may be able to find ways of managing the predictable ones. Rose xx

  5. My husband and I have 2 boys. Our eldest who is now 10yrs suffered an accidental and ‘avoidable’ brain bleed/severe damage as a newborn while under the care (?) of medical professionals (?) (as per the findings of an investigation 4 years later by the Health and Disability Commissioner) and our 2nd son, who is now 7, was diagnosed as Autistic just before his 4th birthday. We have been travelling a very long and difficult road and have struggled with severe grief and all the side effects it has. The impact this has on parents like us is indescribable but what is worse than the ‘living loss’ (that is such a “bang-on” description by the way!), is the intolerance shown by others. For us that has sadly been family members – those who we loved and thought loved us. That has been soul-destroying and that is what has made our journey almost intolerable – not the fact that our children aren’t what we expected. We can accept that now and are slowly learning to live with it – and even kind of like it!! (These kids are such a gift!) Your article has provided me with validation for the ‘condition’ I have experienced and tried (in vain) to explain to others. I feel immensely grateful to you for that – thank you.

  6. Thanks for your detailed response Jude. You have clearly been through so much which would have inevitably complicated your grief. I am so glad that, despite being on the receiving end of poor practice and negative family reactions, you have able to start enjoying your children for who they are, and that the article has been of some help to you. Wishing you, your husband and your boys lots of fun times together in the future, Rose x

  7. Thanks for a very helpful article. I think the term ‘chronic sorrow’ is so apt, as after 28 years of birthdays for my beautiful daughter with autism, I have felt I ‘should’ve’ gotten over this pain, however it comes back with monotonous regularity. It is helpful to feel my feelings are more understood and the periods of depression understandable. It really is about recognising the triggers and gaining support when a bout occurs.

  8. Yes, this chronic sorrow label is useful to describe what we go through as we deal with caring and fighting for our child’s needs – we live under such ridiculously abnormal pressure. It explains why I have frequent periods of getting on quite well with things and frequent equally bad periods when those same things seem impossible, again and again.
    We try and maintain normal essential activities, as letting go of these would make us totally fall apart. We none of us can fall apart in spite of the chronic sorrow, as that child needs us. We need to earn, care for others who also need us, communicate with those connected with our child’s care; but the tasks are not made easier for us. Other people can’t relate as it’s such an unusual experience.
    But we can support each other, and this chronic sorrow isn’t just about triggers that pop up, but daily reminders; as my parent friend who has written a post above said to me a while ago, our homes are like shrines to our children when they no longer live with us, and feel like empty shells; and my other child said that it was so hard when the important person (the child who is disabled) was gone.
    We don’t want sorrow like this, but have to manage it, and this article starts with diagnosing our condition. Thanks.

  9. Thank you. As a mum to a child – now an adult with a horrible life changing mental illness this really helps. I feel I’ve found words that convey my reality. Thank you

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