Sadness and loss: the experience of family members of people with a diagnosed disability

Receiving a diagnosis of a disability can have a profound and
catastrophic impact on family members of people with a disability. As a family member, you may experience the diagnosis as a source of sadness, loss, grief or trauma, or all of these at different times and to different degrees. 

Grief

When families are told that a loved one has a disability, the painful recognition of the discrepancy between what was dreamed of for the
family member and the reality often triggers feelings of intense rrow (Loos, 2002).

Since 1969 when Elizabeth Kubler-Ross first described “Stages of
Grief, the grief of families of people with disabilities has typically been considered in the context of this model. Kubler-Ross describes these stages as follows: denial (“this can’t be happening”), anger (“why me; this isn’t fair”), depression (“I’m so sad, why bother….”), bargaining (“I would do anything to make this stop”) and acceptance (I can’t fight it; it’s going to be ok”). 
 
However, unlike many other experiences of loss (such as death or
a divorce), being told that a family member has a disability is much less final. The nature of someone’s disability usually unfolds over many years, but families are often encouraged to accept -- almost from the outset -- that their loved one has a disability. 

If you are a parent of a child with a disability, feelings of ongoing sadness and loss may persist as you take in what the disability means when your child starts school, reaches puberty or moves through other developmental stages. In the context of such sadness, you may feel judged by others for not having “accepted” the disability or, indeed, judge yourself for having these feelings. 

If not stages, then what?

Terms such as “ambiguous grief”and “non-finite loss” may better
describe the experience of family members of people with disabilities. These terms acknowledge the uncertainty about what is lost at the time when a diagnosis is first given to families, as well as the ongoing nature of the grief process for families (Boss, 2009 and Bruce, 2001). 
 
The grief of family members has also been termed “frozen” because of the way an otherwise natural grief process can be disrupted by the expectation of others. Such expectations may include being encouraged to accept the disability (or perhaps deny it) which may prompt you to bury your feelings. The grief may also be considered “disenfranchised” because families are not afforded the rituals (such
as funerals and memorial services) that communities normally use to acknowledge a major loss.  Finally, the grief has been called “complex” because the range of feelings that can come up may seem contradictory.  For example, grieving can feel like it's being disloyal to the person we love.
 
A study conducted by Melbourne Psychologist Elizabeth Bruce (2000) looked at grief in parents of children with disabilities who ranged in age from 3 years to 21 years. Bruce found that the majority of parents of children with disabilities often still experienced ongoing grief and chronic sorrow about their children’s disabilities when their children were adults. Bruce’s study indicates that a model in which“acceptance” is seen as the healthy end point for someone who has experienced loss is a poor fit for family members of people with disabilities. Ongoing grief for family members of someone with a disability is normal.

Trauma

An event is considered traumatic when it is perceived by a person to be threatening to self or others (Pearlman & Saakvitne, 1995). For
family members of people with a disability, receiving a diagnosis of disability may be experienced this way. 

Symptoms of trauma can include intrusive thoughts and memories,
avoidance and changes to thoughts and mood (American Psychiatric Publishing, 2013). Trauma symptoms may be repeatedly triggered for the families of people with behaviours that put the person and others at risk. Conditions such as epilepsy and asthma that can be life threatening may also be traumatic for family members who have to respond to health emergencies. 
 
A traumatised person may have persistent and ongoing“fight”,
“flight” or “freeze” responses. The fight response may translate into feeling angry, defensive or on “high alert”; the flight response may be experienced as seeking to avoid certain experiences; and, finally, a freeze response may feel like being numb or unresponsive. These symptoms are reported by some families of people with disabilities to be an ongoing part of their experience (Bruce, 2000). 

At risk

Family carers of people with disabilities are a group at risk of
health problems. Left unprocessed, feelings of grief and trauma can snowball into more serious health problems, especially when combined with the high demands of caring. Consider the following statistics: family carers are twice as likely to report chronic health problems such as asthma, high blood pressure, heart disease and cancer. They get less sleep, fewer days of leisure and engage in fewer social activities. Furthermore, they are considered more
 stressed than family carers of people with mental illness, chronic disease or terminal illness, or family carers of the aged or frail (Hastings and Beck, 2004). 

Getting help

As a family member of someone with a disability, it is important
that you allow yourself to acknowledge the feelings you may be having about a loved one’s disability, and, if these feelings cause you significant distress, get help.

• Recognise that it is normal for feelings of grief and sadness about your loved one’s disability to persist for many years. 
• Recognise that anger, feeling on “high alert”, avoidance or feeling numb may be symptoms of trauma related to your role as a family carer. 
• Talk to a doctor or health professional about these symptoms so that you can get help to feel better. 
• Create and seek out environments in which you can talk about sadness and other feelings with people who will treat your experience with compassion and respect.

References

American Psychiatric Association (2013).  Diagnostic and statistical manual of mental disorders (5th ed.). Arlington, VA: American Psychiatric Publishing.

Boss, P (2009). Ambiguous loss: Learning to live with unresolved grief. Harvard University Press. 

Bruce, Elizabeth (2000). Grief, trauma and parenting children with disability. Grief Matters: The Australian Journal of Grief and Bereavement, 2(3), 27-31.

Bruce, Elizabeth & Schultz, Cynthia (2001) Nonfinite Loss and Grief: A Psychoeducational Approach. Brookes Publishing Company. 
 
Hastings, R. and Beck, A. (2004). Practitioner Review: Stress interventions for parents of children with intellectual disabilities. Journal of Child Psychology and Psychiatry 45 (8), 1338-1349.

Kübler-Ross, E. (1969). On Death and Dying, Chicago: Touchstone Press.

Pearlman, L. & Saakvitne, K. (1995). Trauma and the therapist: Countertransference and vicarious traumatization in psychotherapy
with incest survivors. Norton: New York.