Adjustment to Brain Injury

How does brain injury affect the identity or sense of self?

As a clinician I have never been sure which is harder for a patient: suffering a brain injury in late adolescence or early adulthood, when identity is not fully formed and life may otherwise have been loosely planned, perhaps an intended career; but otherwise would have been like starting out on a journey without a destination, but not feeling lost. Or is it harder for a person who we imagine in their forties, with an established job or career, a family, definite interests, a circle of friends they can map their life by, e.g. the school friends, the college ones, the ones you got to know through work or having children. That person has a life and a self with a clear identity, wrapping him or her like a protective shell. But they will not be aware of its protection until it is threatened or lost. In brain injury, in the first case, the loss is of the person who would have been, who would have been a doctor, or a musician, or a person with a normal everyday life, with a mortgage, a family, all the things we take for granted unless you don’t have them at all. In the second case, the loss is of who you are, the years have shaped your identity like a Russian doll, it has developed in layers, with different milestones, but it is integrated and whole. In brain injury, the different pieces of the jigsaw are lost, you no longer feel whole.

I have had patients whose brain injury happened at an early age, who describes the self they would have been as a Siamese twin, travelling around with them, a constant reminder of who they would have been by now. ‘I would have had a mortgage by now’ they say, or ‘a house’. Some patients will unfortunately be so severely injured they will lose some of the ability to reflect on ideas like these, and may actually feel lost without really knowing why. It is important to remember that brain injury doesn’t just affect you psychologically, but physically. Either you suffer other injuries in the accident or your brain injury affects you physically. Thus losses are often physical too. A keen sportsperson may no longer be able to engage in sport. A person who has had a stroke may have difficulty with speech. This can have a profound effect on identity, People describe experiences of others reacting completely differently to them on the phone, or in a shop. Being able to express thoughts, feelings, and ideas is crucial to the idea of self and difficulty with language therefore is seen as a major loss.

Socially, in both cases, people often withdraw from others. In the first scenario their would-be peers are seen as living the life they themselves have lost. They start college, start driving, have relationships, etc. Patients describe enormous resentment, anger, and a feeling of estrangement. Spending time with these people, even siblings, is threatening to them, reminding them of their loss. In the second scenario people patients commonly withdraw or become estranged from family, friends, and former work colleagues. They again describe it as too threatening to be reminded of the life they had. They also often report that after a period of time, especially where physical recovery is good, people don’t see hidden disability and are insensitive to why the person isn’t back at work, or why they are still depressed. On returning to work they may not have their difficulties addressed.

Recent research has identified certain brain areas which may well be involved in building and maintaining a constant sense of identity, which may be disrupted by brain injury. Crucially these integrate frontal lobe areas with regions of the brain which are located deep within the temporal lobe and process memory and emotion.

My own clinical experience however suggests that while brain dysfunction may result in identity disturbances early in recovery or in severe or particular cases, for the most part perceived loss of identity; not recognising the person in the mirror or the life you now have is a protective mechanism, the natural result of a sudden change in your whole life, so without warning and profound that you cannot integrate it with the self that went before.

If you have never suffered a brain injury, ask yourself; what are the first few things you tell people about yourself? Often it will be the things which define you without you realising it; your job, your family, your hobbies, your achievements. Imagine suddenly not being able to work, your family questioning why you’re different and struggling to cope too, your hobbies lost because of physical problems or social withdrawal. You no longer go to work each day, perhaps your children start to lean more towards your partner, sensing you are not as ‘solid’ a foundation. You feel ashamed and don’t know why.

This is why people need support, understanding, and rehabilitation. At BrainCurve all of these areas will be addressed in a safe way.

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