Putting the ‘I’ in identity after brain injury

Who are you? What makes you, you?
Are you a teacher, a baker, a partner, a parent, a shop-a-holic, a daydreamer, a football player, a beekeeper?
Are you a brain injury survivor, or a carer?

What is your identity?

Identity is defined in the Collins dictionary as, quite simply: “Who you are.” Longer and more detailed definitions do of course exist, but generally identity is defined as your sense of self that exists with certain characteristics that are unique to you.
For many brain injury survivors, there is often a clear distinction and difference between who ‘they’ were before their injury and after. Reports of feeling like ‘a new person’ are incredibly common, with various aspects of identity being changed after brain injury.
A change in one’s sense of identity after brain injury can unfortunately be incredibly difficult to adjust to and accept, especially in the early days of injury.
In this feature, we talk to two brain injury survivors about their experience of identity change after brain injury and their feelings around this.
The following tips for coping with identity change have been taken from our new publication on this topic Identity change after brain injury, which is available to download from our website and has kindly been sponsored by Laura Slader Independent Occupational Therapy Services Ltd.

I don’t really know who I am any more. I used to be an entrepreneur, businessman, publisher. All of that was taken away from me in an instant, 10 years on and I’m still struggling to figure out who I am now. Fatigue takes most identities away.

James

Whilst accepting the 'new me', I still can't help but crave to be the 'old me'. However, that craving to have the 'old me' back soon dissipates when I realise what could have been, and how I almost lost it all. When that realisation returns, I forget about wanting the ‘old me’ back and feel joy in knowing that I get to enjoy and shape the new one!

Terry

Since my diagnosis and operation for my acoustic neuroma 19 months ago, I’ve totally lost my identity and still trying to find out who I am.

Sue

Tips for coping with identity change

Identity change is a difficult thing to experience when it is beyond our own control. The process of coping with this change will take time, patience and kindness to yourself.
Below you will find some tips to help you cope with this change. The information in this section offers general tips and should never replace clinical guidance or therapy that you may be undergoing without first consulting your therapist.

Getting support from others

• Talk to your family and friends about how you are feeling
• Get support from a professional who specialises in brain injury, such as a clinical neuropsychologist or a counsellor with experience in brain injury
• Explore getting input from external agencies for aspects of life that are important to you, such as hairdressers or beauticians if your appearance is important, or a cleaner or gardener if you are a ‘house proud’ person
• Help your friends and others in your life to understand your brain injury

Finding things to do

• Learn about the effects of your brain injury and how to cope with them
• Pick up a new skill or hobby
• Identify your personal values – what is most important to you in life, and how can you continue to live by your values after your brain injury to help with giving your life meaning?
• Use creative ways to express how you feel such as art, music, dance or writing

Keeping things in perspective

• Consider whether you want to acknowledge the anniversary of your brain injury – some brain injury survivors find this helps them with the process of accepting their ‘new’ identity
• Think about goals that were important to you before your injury – is there any way you can continue to work on and achieve these, with support or adaptations?
• Remember that while things can be difficult in the early stages of injury, things can and do get better for many people. Over time you might discover new positive aspects that you can celebrate such as resilience, strength and determination
• Remember that being a ‘brain injury survivor’ or a ‘carer’ is only one aspect of who you are as a person – do not forget about all the other important aspects of your identity!

For more tips, see our factsheet Identity after brain injury.