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Living with acquired brain injury
Suddenly one day it happens! You or someone in your family or someone near you has had a brain injury! The damage can be small, but life can change massively and be different, maybe for a long time, maybe forever. What is it like to have had a brain injury? What will life be like? There are many questions and sometimes the answers are not clear. This paper describes how a brain injury can affect different aspects of life.
It just happened
Many people with brain injury have a sense of the time around their injury being unreal. They may also feel a lack of connection with their normal self. During this period, feelings of sadness, anxiety, aggression and depression are common. In addition, people with a brain injury often worry about suffering another injury or losing the function they have regained.
Change in abilities?
A brain injury can cause many different disabilities. As well as the size and location of the damage, recovery will depend on previous personality and lifestyle. Most commonly people with brain injuries experience increased mental or “thinking” fatigue, slowness in thought, impaired memory, difficulty in concentrating, difficulty in doing multiple things at the same time, impaired balance, movement and sensory loss and language disorders.
The impairments may be both visible and invisible. The visible changes are easy for other people to understand, for example, loss of balance or walking ability. The invisible effects are those other people have more difficulty understanding, such as increased fatigue and changes to “remembering”. This can be frustrating for the person with the brain injury as they will often feel misunderstood. Most people in the community do not have an understanding of the difficulties and symptoms that occur after brain injury.
Activities that people were able to do ‘normally’ before brain injury can be difficult or sometimes impossible to perform after. It is common that people with brain injury can no longer do many things at once or fit as much in the day as they use to. They may become burnt out more easily, need to rest more often, and have trouble doing multiple things at once or resuming an activity that has been interrupted. Often it is best to focus on one task at a time and complete it at a slow pace. Many people with brain injury comment they need to live their lives at a calmer pace.
It may take time before people with brain injury resume leisure activities. When they do, it can be easier to continue with hobbies that can be performed in or close to home as these can be done at their own pace.
Return to work and/or study is an important issue for many. "Can I work?", "Can I get back to my current job?", "How much can I work?" are common questions that people ask.
Return to work usually occurs after a long period of leave. It can take many months and sometimes years to achieve. Many who have a job want to try to get back to the same work they were doing before their injury. As a rule, people with brain injuries gradually and slowly return to work and may not necessarily return to the same job.
Most of the people who do return to work manage to work part-time, however, many people with brain injury never return to work. Fatigue, reading, writing and memory difficulties as well as reduced multi-tasking ability are common reasons for people being unable to work or study.
It is common that relationships with others will change after a brain injury. Problems with memory, concentration, ability to hold the thread in a conversation and fatigue affect the person with brain injury’s ability to interact with others. Self-confidence is affected and the person may have more difficulty initiating contact with family an friends. The physical relationship with their partner can also change.
Partners of people with brain injury can experience increased stress. For some partners, especially those living with people who have experienced major brain damage, it may seem that the old relationship has been lost. There may be relationship problems and relationship breakdown can occur. What can cause additional stresses in the relationship is if the person with brain injury has difficulty managing their mood, including issues with anger management, and/or has experienced a change to their personality. In addition other common difficulties after brain injury (such as fatigue, memory impairment, and balance) can put strain on the relationship.
People with brain injury usually have the greatest improvement in the first 6 months after injury. However, in some cases, improvement can continue to occur over several years. Early after the brain injury, many people hope that they will recover naturally or through exercise. Usually life is never quite the same as before the injury. A brain injury creates change in many areas of life, and it takes a long time, sometimes years, for the person with the brain injury to fully understand what he or she can and cannot do.
Understanding the effect of the injury is essential in enabling the person with brain injury to start to adapt and find solutions for living their new life. When they gain that understanding and begin adaption in everyday life then the person is able to accept their new self. It takes time to completely accept their new life but once a person does, it is common for hope to be restored and grieving for loss of the old life to be replaced by improved life satisfaction.
A brain injury causes life to suddenly change and things never really go back to how they were before. It may feel like a “reboot” in life. Such a restart also creates an opportunity to stop and start thinking in other ways which weren’t possible before. It can also give a different perspective on life so that life can be reevaluated and yet still feel meaningful.
Björn Johansson, MD, PhD, Consultant, Department of Rehabilitation Medicine, Uppsala University Hospital and Curtis Reddell, Rehabilitation Coordinator, Brightwater Care Group, Perth, Western Australia.
Version: August 23, 2018.