'Quality of life’ (QoL) is a term often used in healthcare literature, but what does it mean?
A simple definition is offered by Britannica: “The degree to which an individual is healthy, comfortable, and able to participate in or enjoy life events.”
QoL can be affected by difficult life events, such as a brain injury. Many brain injury survivors and their carers report QoL worsening in various ways, such as feeling isolated, being less able to do things independently, or being unable to enjoy hobbies.
What can help to improve QoL after brain injury? A team of researchers recently investigated seven priorities of QoL for traumatic brain injury survivors and here we discuss one identified as being a key priority for QoL:
Being seen and accepted
Adjusting to life after brain injury can be challenging, but having others in your life who recognise and accept the changes can be a big help. Having the effects of brain injury understood and accommodated for can make a difference to survivors’ social lives, experience at work, relationships and their daily interactions with the wider world.
Unfortunately, for many, ‘being seen’ can produce a challenge in itself when the brain injury and its effects are ‘invisible’. For this reason, brain injuries are often referred to as a ‘hidden disability’.
So how can one make the invisible, visible?
Your views
“First of all you have to understand how it affects YOU, this takes time, tears, honesty and professional neurology rehab. Then and only then can you manage it and tell others how it is.”
"I show people my Headway ID card. I explain that I may have difficulty doing or understanding some things!"
- Russ H Aitkins
"Education for those around you and showing them who you are with your new you. Become a pro about what's triggers you off and learn coping strategies and share this with everyone around you. It takes time, patience, understanding and care."
- Lorna Ann Walker
“People with severe head injuries have a lot to process. First, they must understand that they have a problem. Then they have to grasp that brain damage is not temporary. And then they must find a motivation: a vision for their recovery. The trouble is that however many visitors you have, however much family and friends may care, if you lie in bed, day after day, any sense of purpose wanes. The condition of waiting takes over.”
“It's always easier sharing with the friends I have met through Headway. You don't have to explain issues to them. For the others I try and use examples. The between Christmas & New Year period was helpful as explanation of me now. Asked friends to be thinking of that betwixt week when you're not sure what day it is, if/when you should be at work, who you are supposed to meet today, etc.... Told them that feeling is mine several times every day of the year. It surprised some of them for sure.”
- Nemo24
“My friendship group has always hosted a Christmas dinner party during which we each give a short presentation on what we're up to in our lives…For me, this year was the ideal opportunity to walk everyone through my brain injury in a friendly and informal way with a mix of humour and sincerity.”
- Alex
“I refer them to your (Headway) site, it's less stressful than going through it myself as I find it depressing to have to explain over and over again!”
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Brain injury identity card
Gives brain injury survivors added confidence in social situations
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Find support near you
Find local Headway charities and branches in your area
