03 Dec 2021

The uncertain journey of coming to terms with a brain injury

A woman who had experienced a brain injury would often say, “I still haven’t really come to terms with it.” Whenever she said this, the word ‘still’ was very significant; it was always expressed with a clear sense of regret and sometimes of guilt – the brain injury had occurred 11 years ago and she felt that she ‘ought’ to have come to terms with her injuries and its effects ‘by now’.

But the process of coming to terms with a brain injury is neither straightforward, automatic, nor time specific, particularly for some types if impairments. One study found individuals were better able to recognise physical impacts than behavioural and cognitive difficulties arising from their injury (O’Callaghan, 2012). For example, one man was able to precisely identify all the different parts of his vertebrae that were fractured in his accident, but when reflecting about the impairment to his memory, gave wide ranging and contradictory accounts of how much his memory had been affected.

It is known, however, that self-awareness and insight about impairments of Traumatic Brain Injury is critical to the process of rehabilitation and therapy. Fleming (1998) shows people with poor awareness of their impairments are poorly motivated to follow therapies and strategies to address difficulties they don’t believe exist

What is helpful in terms of this process of coming to terms with the long-term impacts of a brain injury? The woman who described her difficulties coming to terms with her brain injury had a previous life which was fundamentally and wholly different to her current life. Before her brain injury, she had a well-regarded professional job, friendships through that job and lived in an area that she liked. Her brain injury meant loss of job, status, identity, networks and also a change of location to an area she did not feel safe in.

A practitioner working with her recognised this was a change almost akin to a bereavement and the loss of this former life needed to be acknowledged and mourned. It was helpful, for example, when making long applications for disability allowances, to refer to and talk about the processes the women had managed in school management during her professional life.

This echoes Charmaz’s studies of people who are coming to terms with different forms of chronic illness, describing how ‘they reminisced about a past self in order to create value in their present selves’ in a process that has many features which echo bereavement. This is an important stage before moving on to the next stage of the process which involves reconciling the new self and the impairments faced to the old sense of self (Charmaz, 1997).

This is a process of negotiation between old and new self; recognition of what cannot be accomplished any more at all, or only with support and also, importantly, what may be brought from the old life into the new. For example, the women who had lost her former professional life really enjoyed reading, but had difficulty obtaining books because of poor mobility and lack of money. The practitioner recognised that reading was an important and also viable part of the old self which could be support and indeed, finding a suitable mobile library service was just as important as assisting more functional daily living capacity.

When working with or supporting people with brain injuries, it is helpful to notice where they seem to be in terms of insight and acceptance of impairments. It is vital to think of ‘coming to terms’ with the injury as a process of unknown duration and different stages, which is likely to be as acutely painful as a bereavement. Thinking of the individual’s reconciliation as a search for identity negotiated between old and new self can provide real insight, empathy and opportunities for effective support.

References

Anna O’Callaghan, Lindy McAllister & Linda Wilson (2012) Insight vs readiness: Factors affecting engagement in therapy from the perspectives of adults with TBI and their significant others, Brain Injury, 26:13-14, 1599-1610, DOI: 10.3109/02699052.2012.698788

Charmaz K. The body, identiy and self: Adapting to impairment. The Sociology Quarterly 1995; 36:657–680.

Fleming JM, Strong J, Ashton R. Cluster analysis of self-awareness levels in adults with traumatic brain injury and relationship to outcome. Journal of Head Trauma Rehabilitation 1998; 13:39–51.

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