- By Niall McCracken
- BBC News IS
Nikita has had an acquired brain injury for several years
A group of young people with brain injuries have created a film to raise awareness of their condition.
My Invisible Brain Injury is written and performed by members of a support and mentoring group run by the charity Brain Injury Matters.
The young people from Northern Ireland who feature in the film all have acquired brain injury.
It is brain damage that occurs after birth and is not related to a congenital or degenerative disease.
Acquired brain injury is a long-term, often hidden disability.
It can be caused in a variety of ways, including physical trauma such as a car accident or a medical emergency such as a stroke.
Other causes may include concussion, infection, and certain types of cancer.
There are no official figures on the number of people living with a brain injury in Northern Ireland, but it is estimated that around 2,000 people get it each year.
Brain Injury Matters said this is likely to be an under-representation of the true figure, as many people live with the long-term effects of brain damage, which can sometimes be invisible.
“It’s invisible”
“The answer entered my brain and then actually decided to delete itself.”
That’s how Nikita felt while taking the exam.
Feeling nervous and nervous is not an uncommon experience for any young person taking a test.
But the 22-year-old from County Armagh has been living with an acquired brain injury for several years.
“It’s hard to describe to anyone who hasn’t experienced it,” Nikita said.
“I had done all my revision, I knew the answer – it’s not even like brain fog, like the answers are gone.”
She adds: “After the brain injury, I just felt really alone because people don’t realize that not everything related to brain injury is visible.
“At first I felt like I couldn’t tell anyone and I just think it needs to be talked about more.”
Nikita is part of a group of young people who created a short film describing what it’s like to live with a brain injury.
It describes the general effects of brain injury and the impact on young people and the lives and relationships of those with whom they live, work and interact.
Some scenes show the effect it can have on someone’s professional life and the significant adjustments they may have to make, while other scenes look at everyday struggles they may experience, such as ordering coffee.
The film was created by young people from the Southern Health Trust area – they wrote the script, recorded the voiceover, acted and helped with the filming.
Josh is from Moira in County Down and is part of the group.
“I did most of the cinematography and shooting, I liked directing,” he said.
Gabriele, from Belfast, enjoyed being involved in all aspects of the production.
“I like being creative in my spare time, making music and stuff, so it was great to have so many roles in our film,” he added.
“With the movie, it’s important for us as a band to show how hard it can be for us in real life so people can understand.”
Daniel, from County Tyrone, has one of the last lines in the film and talks about the importance of the brain injury group in helping to make new friends.
Stigma
The group was brought together through the brain injury peer mentoring program.
It connects teenagers and young adults with brain injuries to help build their confidence.
Paula Matters is part of the children and young people service at Brain Injury Matters.
The group was brought together through Brain Injury Matters’ peer mentoring program
She said: “Our mentoring program is so important because it creates a space for these young people to have fun and meet other people who have this shared experience.
“Not only does this help them better understand their own injuries, but it can also show what works best for them to help them live their best lives.”
Rory has been mentoring the group for several years.
Rory has been mentoring the group for several years
He believes that support for young people is key to helping them overcome the stigma that still surrounds brain injuries.
“I remember when I was 16 and I had a brain injury, there was no one around me who had been through this experience, so I couldn’t ask questions or get advice,” he said.
“So I think what the film we’ve created does really well is show young people today that you’re not alone and help is out there.”
Brain Injury Matters has received over half a million pounds in grants from the National Lottery Community Fund to help young people with acquired brain injury understand the impact of their injury and get support.