Module 11: Finding meaning in life after TBI

It has now been more than a year after your TBI and life has changed a lot.

As you adapt to living with a TBI, you may find that you no longer need the same amount or intensity of rehab as you did in the earlier stages after injury. It’s around this time that most people will shift their focus from rehabilitation to pursuing activities that promote meaning in life.

Finding meaning in life after TBI

You have probably heard of the words meaning in life before. But what do they mean from a scientific perspective?

Researchers believe there are two important parts to finding meaning in life (78). The first is to find a sense of coherence – this means to understand the nature and purpose of one’s life. The second is to find significance in life – this means to take part in activities or achieve goals which make a person’s life feel important and worthwhile.

Because there is no universal meaning that can fit everyone’s life, it is up to each person to create their own meaning in life (79). It can be tricky knowing where to start.

This module discusses research about three common ways that people with TBI find meaning in life after brain injury (69):

• Finding your identity,
• Being part of things,
• Finding new opportunities for growth.

Finding your identity after TBI

TBI is a life changing event. There are many abrupt life changes which follow a traumatic accident or injury including:

• Changes to your body,
• Changes to your personality, thinking and memory,
• Changes to your energy levels and mood,
• Behavioural changes caused by changes in your brain chemistry,
• Changes to social relationships and dynamics,
• Changes to occupational roles and financial situation due to inability to work.

Because of these sudden changes, many people with TBI struggle with a knowing who they are after their injury. This is called loss of identity (1).

What does loss of identity feel like?

Your personal identity is the way you view yourself. It’s also called your self-image or sense of self (80). Your identity is made up of unique characteristics, traits and roles that make you the person you are – and a person who is different from everyone else (81).

For many people with TBI, loss of identity has been reported as a general feeling of “losing something about themselves” (1) – without being able to define exactly what that something is.

For others, loss of identity is the awareness of losing particular skills, roles or characteristics that were highly valued or important to their self-image before injury. Some examples include:

• Loss of employment to a person who values their career achievements,
• Loss of communication skills to a person who identifies as a ‘social butterfly’,
• Being unable to take care of their children to a person who values being the primary caregiver for their family,
• Loss of mobility to a person who values freedom and independence,
• An altered appearance due to physical injuries to a person who values their physical beauty,
• Loss of joy or spark in life to someone who identifies as being upbeat and positive.

Losing important parts of yourself can make you feel like you’re no longer the same person you were before injury. You might also feel as though you have lost a part of your future or potential self because limitations caused by your injury stop you from doing the things you planned to do. Many people with a TBI describe loss of identity as feeling like both a part of the past and future have disappeared at the same time (1).

Dealing with loss of identity is complex. It can take many months or years to understand what has happened and who you are after TBI (75).

As you become more aware of the changes that have happened after your TBI, you may experience strong emotions including anger, grief, sorrow, shame or even self-blame (1, 75, 82). These feelings are common. It is okay to feel what you feel. Your life has changed, and it is healthy to express your feelings around the loss and changes in yourself, your body, your past and future.

Mental health clinicians are a group of healthcare specialists who can help you to work through your thoughts and feelings. They include psychiatrists, psychologists and counsellors. Your rehab team can refer you to see a mental health clinician if this is something you would like.

Finding who you are after TBI

Research shows that in order to lead a meaningful life after TBI, it’s important to find a balance between the changed, unchanged and changing parts of your identity (75, 82). Let’s look at the meaning of each of these terms.

Changed self

We know there are many life changes after TBI. This means that it’s not possible to be the exact same person and have the exact same life as before injury.

Part of finding who you are after TBI is understanding and accepting that parts of yourself and your life have changed forever (83). Acceptance can take many months or years.

At first, it’s common for people to resist or deny that changes have happened. But researchers have found that people who stay fixated on having the exact same life they had before injury find it more difficult to lead a meaningful life after TBI (82). They are also more likely to struggle with poor mental health for a longer time after injury (75, 82).

Unchanged self

Many people focus on the changes after TBI – and there are many. But it’s also important to remind yourself of what’s still the same. This might include your core values, goals, strengths and weaknesses, likes and dislikes.

For example, you might think of yourself as someone who is kind and hardworking who loves the beach but has a fear of sharks. This is still the same person you are after injury. Part of finding who you are after TBI is recognising that parts of your core person are still the same irrespective of your injury. This can also be a powerful way to help you find a sense of self and continuity after injury (80).

You may have trouble remembering who you were before your injury. You can ask your family or friends to share photos or stories about their favourite parts about you. This can help you to build an understanding of who you are and your life before injury.

Changing self

After injury, you won’t be the exact same person as you were or have the exact same life. But there will also be many parts of your person that are still the same. Finding a balance between the changed and unchanged parts of your life can help you to find who you are after your injury. There’s also space for you to find new or changing parts of your identity. Scientists call this process identity restructuring or identity reformation (80).

Research shows that people who understand that some parts of their lives have been lost after TBI – but who do not define themselves by their injury or limitations – have greater quality of life after TBI (84). They see themselves as being in a state of ongoing progress and development for years after injury (69). They accept that they are a person who is continuing to change, learn and grow through their experiences. This understanding of being a changing person is powerfully associated with positive well-being after injury (75).

Being part of things

‘Being part of things’ means to be actively integrated and connected with other people and the community. Researchers have found that being part of things is one of the most important factors in leading a meaningful life after brain injury (75).

Taking part in activities you enjoy is a great place to start. This can include offline or online activities. It can be a great way to meet like-minded people or people in a similar situation as yourself. Some examples of social activities include taking part in a support group, leisure and recreation activities, or volunteer programs. Some people may feel ready and want to work towards resuming education or re-joining the workforce.

There will be more on the importance of social participation after TBI in Module 12: Social connection and participation.

Finding new opportunities for growth

After TBI, it’s normal to focus on the many challenges and negative consequences caused by injury. But did you know that positive change and growth can also happen after brain injury? (85).

The scientific term for positive changes and growth after trauma or adversity is post-traumatic growth (86). Scientists use the word ‘growth’ because some people are able to find a higher level of well-being, happiness and life satisfaction after injury compared with their life before TBI (87). In other words, these people have become stronger and better people because of their TBI (88).

Some examples of post-traumatic growth that have been reported by people with TBI include(1, 88, 89):

• Having a greater appreciation of life after injury
• Feeling grateful to be a survivor after coming close to death,
• Recognising personal strengths after injury happened,
• Experiencing strengthened and enriched relationships after TBI,
• Finding new opportunities or pathways in life that would not have been possible before TBI.

Post-traumatic growth is possible following mild, moderate and severe TBI (90). But it takes time to happen (91). These are some ways that researchers have found can help you to find positive change and growth after TBI (1, 88, 91, 92):

• Take part in employment or volunteering,
• Be with others who share similar experiences,
• Be willing to try new and different things – even if you’re not successful,
• Focus on what you can do, and celebrate your achievements,
• Try to keep a positive outlook. Hope, zest, perseverance, courage and humour are traits that have been associated with positive change and greater life satisfaction after TBI.

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