Did you know that 1 in 45 Australians lives with an Acquired Brain Injury?
I’ve been working as a psychologist supporting people with Acquired Brain Injury (ABI) for a while now, and I realise that before I entered this space I knew very little about ABI. I am now very passionate about raising awareness of ABI in the broader community and as part of Brain Injury Awareness Week, I’d like to share some things I’ve learnt through walking with people on their recovery journeys:
An Acquired Brain Injury, or ‘ABI’, is defined as any damage to the brain that occurs after birth. This can include stroke, traumatic injuries sustained through car accidents, falls, or other impact to the head, brain tumors, lack of oxygen to the brain and neurodegenerative diseases, among other things. It turns out, it’s surprisingly easy to hurt your brain! Brain injuries can vary in severity, ranging from a mild traumatic brain injury (also called concussion) from which an individual would be expected to fully recover, to severe injuries that result in lifelong challenges.
Every brain injury is different, so no two people will have the same experience of injury and recovery!
ABI is the invisible disability. One of the most common things people tell me they struggle with is that no one can see their injury. Family, friends, employers and strangers will often assume that once an individual has come out of hospital, they are recovered. Statements such as “But you look fine, there’s nothing wrong with you” can be extremely disheartening to someone who is struggling just to get on with their activities of daily living.
An Acquired Brain Injury is not an intellectual disability. While some severe injuries can cause changes to a person’s intelligence, in many cases this is not true. What it can do is change the way a person accesses their intelligence. So, please don’t talk to someone with an ABI as if they’re stupid, and please don’t talk to their support person instead of addressing them directly. It may be helpful to slow down a little if you’re a particularly fast talker, or to wait and give someone extra time to respond before you ask the next question, but take their lead on this. The person living with these challenges is the best person to ask about what would be helpful for them in any given situation.
Memory is a common struggle. There are many different types of memory, from our working memory that helps us temporarily hold and use information, to memory for skills and long term memory for events from our past. Different ‘types’ of memory are housed in different areas of the brain, meaning it’s fairly easy to disrupt one or more different types of memory when a brain injury is sustained. This can make it hard to remember day to day things (such as hanging out the washing, that you have bills to pay or that there’s something in the oven), people’s names, events (birthdays, appointments) or important information (like things you really need to tell your doctor). This can all impact a person’s ability to work, live independently and maintain healthy social relationships.
Cognitive fatigue can be debilitating. After sustaining an injury, the brain has to work significantly harder to do every little thing. The brain is a remarkable thing that can find new ways of doing things, even after a particular area has been damaged, but this takes effort. Individual’s living with ABI often report they fatigue quickly, especially when engaging in cognitively demanding tasks and may need more rests, shorter working days or help with important tasks that may overload them.
Information processing issues are another challenge closely linked to fatigue. The brain needs to work harder to process information, so it can often take longer after an injury. This means someone with an ABI might need you to be a little more patient with them, as they process information a little more slowly than they used to. It may also mean that they struggle to take in too much information at once, so one on one conversations may be easier for them to follow than larger group chats. It could also be easier for someone with an ABI to meet in a quiet place with less distractions, as it can be challenging for an injured brain to effectively tune out unnecessary information, like the conversation at the next table, the music playing or the waitress calling out people’s orders nearby. If you know someone with an ABI, talk to them and find out what works for them.
Emotions can be hard to control. Some people find that after a brain injury, they struggle to regulate their emotions, often experiencing snaps of anger or bursting into tears with no real warning. This can happen if the areas that control our higher level thinking and emotional control (in the frontal lobes) are damaged, and it can also be caused by the processing issues mentioned above. If the brain is dedicating precious resources to attention and concentration, it may not have the ability to also be in control of emotional reactions all at the same time. This can be a source of tension in relationships and can cause a lot of shame for the individual living with the ABI. It’s helpful to remember that if someone with an ABI has become disproportionately angry with you, it’s probably not on purpose, and at the time they have limited control over this. Over time, a person can learn skills to get back in control of their emotions, but some patience from loved ones in the meantime can go a long way!
There is so much more to understanding Acquired Brain Injury that I feel that I haven’t even scratched the surface, but if there is one more point I’d really love to highlight it’s this:
The brain can heal itself. For a long time now, the scientific and medical communities have believed that our brains are hard wired, and that once they were damaged, any deficits would be permanent. The problem is that for many people this became a self-fulfilling prophecy. They were told not to try to get better because there was no hope, so they didn’t try and didn’t get better. We know now that this couldn’t be further from the truth. In fact the brain is ever changing, right throughout the lifespan. This means that even after an injury, the brain can create new neural networks, new pathways that allow it to regain or compensate for lost functions. We call this Neuroplasticity, and it means that people can continue to make improvements even years after they initially sustained their injury!
I have been so inspired by the people I have met along their recovery journeys. I have seen the strength of the human spirit and been awed by the resilience and determination that some people show after such a traumatic and life changing injury. This post doesn’t nearly cover what I’d like to be able to share, and the knowledge I have still feels insignificant in the grand scheme of things. But what I do hope is that this post will encourage a conversation within our community about something that is generally poorly understood and therefore taboo. If you know someone who has had a stroke or significant head injury, take the time to learn about their experience and challenges. Ask questions, be open, be aware and together we can take steps toward acceptance and supporting our friends, family, and members of our community living with an Acquired Brain Injury.