An identity lost: the social consequences of acquired brain injury

An acquired brain injury (ABI) refers to any brain injury that occurs after birth and can result from an accident or something non-traumatic such as stroke or brain tumor.

The Brain Injury Association of New Zealand reports that approximately 90 New Zealanders sustain a brain injury every day and it has been suggested that 6000 New Zealanders have a stroke each year.

People sustain a range of impairments after an ABI, including changes in physical and cognitive abilities, and in personality and emotions. However one of the biggest changes impacting on life after an ABI is loss of identity. Loss of sense of self or identity is common and distressing after an ABI. This can range from a vague feeling of “differentness” right through to feeling completely disconnected from one’s previous life. This change is usually sudden and one that is invisible and potentially very destructive.

Everybody has a sense of self or identity. Who we are includes the roles we fill such as in our job (e.g. a teacher, a plumber), our social relationships (e.g. a husband, a daughter), through to things we do in our spare time (e.g. a runner, a musician), as well as things about our personality (e.g. a hard worker, reliable, funny, shy) and physical attributes. Our sense of who we are is formed very early in life. Children as young as four form views about themselves (e.g. I am the tallest at preschool, I am good at helping Mum). After an ABI some of these views of self are challenged and many survivors are faced with the question “so who am I now?”

Sometimes this loss of identity is a consequence of the brain injury. Damage to the frontal lobes or deep in the white matter of the right hemisphere can cause problems with self awareness such as knowing how one is coming across socially or noticing when others are upset or bored by your conversation or behaviour. This is not the same thing as denial although this can also occur after an ABI such as when the person resists accepting they might be different.

Loss of identity has a huge impact on social relationships. The person with ABI may no longer react the same way in social situations or at home. This can place great strains on relationships. Things that they used to enjoy may no longer be easy to engage in or even fun. When they are asked what they do in social situations they can say “well I used to be a …” and this can sometimes be embarrassing and difficult to explain. Working out what has changed and what is still the same after an ABI takes time, often through many trials and errors, frequently coming at a huge cost.

If you would like advice about how to seek help after ABI, you can discuss the problems you or your loved one are having with your GP, a psychologist (www.christchurchpsychology.co.nz) or contact the Brain Injury Association (www.brain-injury.org.nz or ph 365 3262). With support and time it is possible to increase your understanding about the impact of your brain injury and to learn how to manage these changes so that you can once again trust in and feel optimistic about, who you are.

Dr Debbie Snell is a clinical psychologist specializing in neuropsychology, concussion and rehabilitation. You can learn more about her and her work at www.christchurchpsychology.co.nz.

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