Loss and Grief
Exploring the concepts of loss and grief within the safety and security of a peer support network may be helpful to people living with disability, their family members and supporters. This can be an emotive discussion topic, and peer leaders should be adequately confident in their facilitation skills in this area when considering this.
‘Disability, whether congenital or acquired, significantly alters the life experience of the individuals who are directly affected and those closest to them’ (Oullette & Gough 2002, p. 174).
‘Learning about disability, loss, and grieving means learning about growth and change. Both involve confusion, fear, pain, and opportunity… Rarely is the impact of the disability limited to a change in mental or physical functioning’.
While people with disability can live lives full of meaning and inclusion, negotiating and adapting to the onset of disability does require a process of loss identification and grief.
What is Loss?
This is experienced when something of value is removed from our lives, and results in a sense of personal diminishment such as a loss of sense of self. Loss can be anticipated, or sudden and unexpected, and may be felt in physical, psychological, spiritual, social and cultural ways. Loss is quite a broad concept – and isn’t related only to events of death and associated bereavement, but to anything that has this diminishing effect on and in our lives. Loss represents a change in the structure & meanings of our lives, and can be felt at our very core. Any significant change can include an experience of loss.
As a group, can we suggest a list of losses that others could experience?
What are some experiences of change in your life that have led to a feeling of loss?
What is Grief?
A natural reaction in response to a loss, and consists of our psychological, behavioural, social and physical reactions to the perception of loss. As a process, it is the emotional adjustment of living after experiencing a significant loss. It is working through a process where we can look back on the loss with reduced pain, and adjust to the change.
What does grief look like?
This is very variable, and looks like different things for different people and for different losses and stages of their life. Grief can be expressed as:
- Expression of feelings, such as sorrow, despair, loneliness, abandonment, resentment, guilt;
- Sense of protest, such as anger, searching, preoccupation with the loss; and
- Sense of assault, such as confusion, dis-organisation, fear, anxiety as well as physical symptoms.
It is vital to remember that expressions of grief vary greatly, and there are no hard and fast rules about ‘how’ people should grieve. This is definitely a judgement free zone!
What are some things you might see in someone else who is working through grief? (Hint: some ideas include: shock, anger, anxiety/confusion, loneliness, yearning, relief, fatigue/reduced energy, shortness of breath, upset stomach/change in appetite, physical pain, disturbed sleep/dreams, social withdrawal).
What is mourning?
It is an active process, a course of action and process of adaptation. An individual journey of mourning occurs beyond the more immediate grief experience related to a loss and enables a gradual transformation or alteration of social and psychological ties and connections previously held in relation to the ‘lost’ person or thing in our lives – the key here is gradual. The mourning process is consistent with the recovery journey which follows the acquisition of disability, and involves adapting to our new way to be in the world.
What are things you needed to adapt to during your recovery journey? Do you feel you are still in the active mourning process? Have you adapted to many changes or working on it?
What things impact on our experiences of acquiring disability?
There are lots of factors that impact on this experience: when and how it happens – for instance whether sudden or gradual onset, is the disability illness-, age-, accident- or violence-related, the type, severity, visibility and stability of disability, responses of family and friends, your age and gender, your preexisting inner resources (such as temperament, self-image, self-esteem), presence or absence of family support, income and financial resources, available technology (medical and other), as well as government funding trends (impact on availability of support historically which the NDIS is planned to address) (list adapted from Power & Dell Orto (2002), & Vash & Crewe (2004).
What are some of the losses related to disability acquisition?
Disability usually relates to a loss of function or ability, but physical loss only doesn’t describe the full impact of disability on the person and their family. There is likely a raft of secondary losses/changes, too, those that may not be as obvious to others, or recognised initially by the person themselves and can include (discuss these with the group as you write them up on a board for later):
- role changes, both personally and professionally, which may be particularly felt by people who have always spent a lot of time ‘doing things’ for others, and now find themselves on the receiving end of support;
- loss of income, future career goals and plans;
- reduced social networks with resulting isolation, often due to change in work;
- changes in physical appearance/strength or mental agility;
- not being able to drive, at least initially, and the resulting loss of sense of independence; and,
- feeling that hopes and dreams have been shattered (needing to find a new way of being in the world).
All of these influences add to the importance of non-judgmental responses, as each person’s journey is unique. Each person will have a different perception of loss/change, and working through this process is very difficult. For some people using the words ‘adaptation’ and ‘adjustment’ is less challenging than the word often used – ‘acceptance’. Building new hopes and dreams, as well as remembering and reshaping previous ones, is a vital element of this relearning process and can actually be a positive and growing experience.
Just a few notes about depression and mental health challenges:
Keep in mind that experiencing feelings of depression happens to most people at some stage in their lives and working through grief after loss is part of the process of life. Depression may occur during this time and, when in response to specific changes/events, this is known as reactive depression and, for most people, is a ‘normal’ response that will resolve without need for ongoing support. However, when very low mood continues for extended periods of time, professional support should be sought. For people living with disability or long-term health issues, depression may persist when realisation of major, permanent life changes occurs.
If your peer support network has a well-trained, skilled facilitator in this area, this discussion can be a very helpful and positive topic. However, it is also highly emotive and care must be taken in ensuring members of the peer group are able to access support after the session if required.
Useful links and resources
- Managing Grief Better: People With Intellectual Disabilities: http://www.intellectualdisability.info/mental-health/articles/managing-grief-better-people-with-intellectual-disabilities
- NSW Health: www.health.nsw.gov.au/disability/Publications/being-a-healthy-woman-83-87.pdf.
- ‘Supporting People with Grief and Loss’ from Scope Australia: https://shop.scopeaust.org.au/shop/supporting-people-grief-loss/
- Identifying signs and symptoms of depression from Beyondblue: the national depression initiative: http://www.beyondblue.org.au/index.aspx.
- Lifeline (24 hours): 13 11 14 for telephone crisis counselling and support.
- Crisis Care (4pm-9am): 13 16 11 also offer telephone crisis counselling and support.
- Alcohol and Drug Information Service (24 hours): 1300 13 13 40 offers telephone information, counselling and referral service for those concerned about drugs or alcohol use.
- Youth Healthline: 1300 13 17 19 offers telephone counselling, support and information for young people aged 12-25.
- Mensline (24 hours): 1300 78 99 78 offers telephone support, information and referral service helping men deal with relationship problems.
The information on this page is also available as a downloadable Quick Guide, by clicking below. There are.pdf and word versions.