Ability to see the positive
It is important that both the person with TBI and those supporting them can see some good things even in negative situations. Positivity remains important throughout the entire journey. This is not always easy, and requires effort.
Having other people around who are trying to see good things in a situation can help. It can also help to make sure the person with the TBI is still doing things that are meaningful to them, even if they are different things than before the injury.
Seeing the good things in difficult circumstances can protect people from the feeling of wanting to escape their lives. Examples are: seeing time away from ‘normal life’ as an opportunity (e.g. for time with loved ones); opportunity to make changes that will be beneficial in the future; comparing situation now with other difficult situations to be grateful for what is good in this situation.
Being accepted as yourself
People with a TBI need to be accepted as themselves, rather than the focus being on the injury. This includes accepting their way of being, accepting who they are as a person, seeing them as more than an injury, acknowledging both who they were before the injury and who they are now.
Determination
A person’s determination to recover and improve can be helpful or unhelpful. It may help them do things that are necessary to improve recovery, but when determination goes too far it can prevent progress (e.g. because of frustration or fatigue).
Some people may be more determined because of their personality.
How determined a person is about something can be different at different times, even in the same day.
Change in values and/or outlook
The injury or recovery process can change a person’s values or outlook on life. The change can relate to the activities they enjoy doing or what they want to do in their lives.
This can change how they react to situations or the decisions they make. It can also affect how they see themselves.
Difficulties with motivation
Following a TBI people may have trouble getting the energy or the motivation to do things they want or need to do, even if they know they are important. Being determined or thinking something is a good thing to do is sometimes not enough to help someone act.
Escaping this life
The experience of trying to recovery and carry on after a TBI can sometimes be overwhelming. People can feel need to withdraw, sometimes just from a conversation, other times from their entire life.
Despite feeling a need to escape from their situation, people often also feel a sense of obligation to those important to them, which motivates them to carry on and keep trying.
People have different ways of ‘escaping’ They may choose to avoid a situation, or find ways of getting out – e.g. new activities. For some, drugs or alcohol may be used to escape, and some people consider suicide.
Family as backbone to life; drawing on experience of those who are close to me
When a person’s family is really valuable to them, they play an integral part in the recovery and adaptation. Their advice, support, and positivity contributes to how well a person will manage on their journey.
Having access to an influential insider
A person with TBI or their whanau may reach out to someone they know who can tell them what they are entitled to and advise them on how to get it. It might feel like things are easier for them as a result of knowing this person and like there is someone on the inside of the system “pulling strings” on their behalf. They may feel fortunate to have this person impacting the course of their recovery.
How life experiences, life roles, spirituality, and sense of self contribute to how you manage
There are many personal attributes which may impact how well you manage. For example, who someone is, how they adapt to change, how they view what happens to them. Other life experiences can also contribute to ability to adapt and manage.
Learning to listen to myself to interpret in order to act
A person with TBI will need to learn not only to recognise symptoms, but how to respond to them. This is part of learning how to act appropriately to situations. Some people may use tools such as recording themselves and reviewing the footage, using a mirror to see facial expressions, or asking people around them for feedback.
If people don’t recognise they have any problems, the first step of this is to see how things are.
Sense of self
People may feel like they have changed since their injury. It may take some time to figure out who they are now, and how that is different from who they were before. An example may be people who felt strongly connected to a job which they can no longer perform, or going from a provider role in the family to being reliant on the support of others.
While people are getting to know their new self they may notice a loss in self-confidence. This will impact on a person’s ability to cope. However many people find self confidence as they become more familiar with their abilities, and as they find less need for supports.
Some people may not be comfortable with their new self, which can create tension. They may now feel like a burden or a failure. Others may not notice changes in themselves, even though those close to them have.
This also applies to significant others, who may also notice a change in their sense of self. For example, they may feel like they have become defined by their role as caregiver.
Wanting to give back
People with a TBI may get to a point where they would like their experiences to have meaning by way of benefitting others in a similar situation. This may include contributing to research about TBI, and peer support.