Isolation is a common problem after brain injury. In many cases it can stem from the changes in personality, cognition and behaviour that are so common for survivors.
Headway’s own research shows that more than 70% of brain injury survivors have seen deterioration in their social life following brain injury, with a similar percentage feeling that people in their lives do not understand the effects of their condition.
There can be numerous reasons why isolation occurs. The ‘new me’ that many people experience after brain injury may be difficult for family and friends to accept, and many will slowly drop away over time.
Many survivors struggle with noisy environments, while fatigue can make socialising a challenge – as depicted in Headway’s short film Lost in a crowd.
Depression is also a common effect, making it hard to seek support and form a plan to address the problem. Brain injury can have a hugely isolating effect on carers too, who can find that the demands of caring mean there is little time for socialising.
“I live alone and I worked full time as a nurse before I sustained a TBI,” said Jodie Bacon.
“I was often busy arranging social events. I loved being out at coffee shops or going out for meals and catching up with my friends. I also looked after my mum who had problems with pain, so I’d take her out and do fun stuff.
“All of that stopped in an instant. My friends were still busy with their lives, which emphasised my lack of life. It felt like I no longer belonged anywhere. If I had the energy to get out chances were things would be too noisy so anything organised by someone else wasn’t suitable.
“To begin with I thought the effects would soon be over. When it became clear it wasn’t going to be that quick I really felt the loneliness.
“For me the change came when I stepped out of my comfort zone and wrote my friends a message explaining I was still poorly and isolated. I also spelled out to them specifically what I could and couldn’t do, and what I needed help with.
“They had no idea and actually in the most part assumed I was back at work. Once they knew what I needed, some of them were there and have been amazing.
“Times like this always show the marks of a true friendship. But if you don’t tell people you need help, they will assume you’re fine. It’s hard to do but well worth it. You’ll be disappointed and also pleasantly surprised.
“My mum has really stepped out and grown in confidence and has come over often to take me out for a coffee or to the supermarket. She’s been a real lifeline. I’d have been lost without my cat also.
“Her snuggles have filled a big gap in my life!”
Dr Simon Fleminger, Consultant Neuropsychiatrist, St Mary’s Hospital, London
In my experience of seeing people with cognitive, emotional and behavioural problems months and years after a head injury, social isolation has a major adverse impact on outcome.
Social isolation is associated with depression, anxiety, low self-esteem and a sense that one has less control over one’s life. Social isolation after a brain injury is common.
The emotional and behavioural problems that are regularly seen after head injury, such as lack of empathy and irritability, lend themselves to social isolation; social networks break up over time post injury.
At the best of times it is difficult trying to help people find the support they need, if they lack friends and family who can encourage them to seek help and attend appointments.
Things could improve if case managers were available to help, but this is rarely the case. Often the best hope lies in the voluntary sector.
Self-help groups can be invaluable helping the injured person understand that they are not alone, providing a safe place to talk about worries and some semblance of a social network, and pointing the way to further sources of help.
In person: Headway groups and branches offer a range of services to people with a brain injury, their families and carers, and this includes a place to speak to other people who truly understand.
People experiencing feelings of loneliness and isolation should always speak to their GP to discuss the options.
By phone: The freephone Headway helpline is available to anyone seeking support or guidance following brain injury. It’s open Monday to Friday, 9am to 5pm, and you call contact the team by calling 0808 800 2244 or emailing firstname.lastname@example.org.
Online: Our Relationships after brain injury information is designed to help build and maintain personal relationships, addressing one of the major causes of isolation. Information for family members, friends, colleagues and other relations will help them to understand how to help and stay involved.
Our website also includes information for carers on how to look after themselves after brain injury, including tips and strategies for balancing the demands of caring with an active social life.
You can also get support online from Headway’s HealthUnlocked community.
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