We see you: loneliness after brain injury

Anxiety, fatigue, memory issues, noise sensitivity and lost confidence can make even simple interactions feel overwhelming. The work, hobbies and routines that once held friendships together can fall away. Even the closest of relationships can become strained.

For many, plans get cancelled, messages go unanswered, invitations stop coming and, slowly, isolation settles in. Often unnoticed. Often unseen. Often lonely.

But here at Headway, we see that isolation, that loneliness. And we see you.

We see the profound struggle you face – and we’re here to help.

Our compassionate, expert support can help loosen the grip of loneliness. Whether that’s with a listening ear on our free, nurse-led helpline, or in safe, welcoming spaces across our network of regional support, new social circles can form, experiences can be shared and confidence can start to rebuild – surrounded by people who truly understand.

What loneliness after brain injury really looks like

Throughout Action for Brain Injury (ABI) Week, Headway will share real-life stories from brain injury survivors and loved ones, talking candidly about what loneliness after brain injury looks like.

Meet the people behind the stories

Below, Warren, Symra, Avril and Sophie share their experiences.

Warren

Warren has sustained two brain injuries in his lifetime; the first when he was 29-years-old and the second in 2012 when he was hit by a lorry in a hit and run.

Describing his experience as “the loneliest, scariest place to be”, Warren said he was simply trying to survive each day as they came.

But that was before Headway- and before taking the courageous step to meet with fellow survivors; a day which, he says, saved his life.

Warren said:

“You’re just trying to get through every day; you’re just trying to survive. It was a very lonely place.

“I remember coming to Headway West London for the first time and I broke down outside. I couldn’t even come inside I was so scared, I didn’t know what to expect.

“And then I went inside and that day saved my life.

“You’re just welcomed with open arms. I felt no-one was judging me and that it was a safe place. For the first time I didn’t feel alone, and I felt like I would actually make friends.

“They’re the most incredible, courageous, bravest people I’ve ever met in my life. And I wouldn’t have met them if it weren’t for Headway. They’re all so inspiring.”

Symra

Law graduate Symra was diagnosed with a brain tumour in 2020 during her post-graduate scheme – and although her tumour is now removed, she’s been left with symptoms which have profoundly changed her ability to socialise.

Living with a brain injury has affected her ability to maintain relationships, leading to feelings of isolation and loneliness.

She said: “I don’t speak to a lot of friends who I used to speak to- that is partly because they have their own lives and partly because we don’t meet each other as much either.

“I was diagnosed during COVID and my immune system was weak, so I didn’t go out much.

“I have gradually gone out and done things over the years, but I have to make sure that someone is available to stay with me at all times, so I’ve lost that independence; just being able to step outside my front door by myself.

Symra attended Headway North Staffordshire, where she says she settled in quickly, and made friends.

“We talk about our injuries, our past lives and how things have changed”, she said.

“Everyone understands what you’re going through because they’ve all had a brain injury and got similar symptoms to you.

“I don’t know what I’d do if I didn’t come here.”

Avril

Following emergency brain surgery at the age of just 19, Sophie’s life would never be the same again. And neither would her mum’s.

Avril dropped everything to care for Sophie. But without her regular walking clubs and social groups, she began to feel isolated and alone.

With all the attention on the brain injury survivors, their carers can often get overlooked. But we see you. And we’re here to support you too.

Avril said: “When Sophie had surgery, she couldn’t do anything- she couldn’t eat or speak. It was just horrendous seeing her in that condition.

“Then further into her recovery, she’d forget things, like leave taps running or cookers on. I couldn’t go out because I knew I needed to be there for her.

Avril suggested to Sophie they attend their local Headway, Headway Meirionnydd, to meet others affected by brain injury.

“From that first meeting, it’s just been amazing how her life has changed,” Avril said.

“She shines when she comes in the room. She’s a happier person, especially when we do activities like paper making with flowers or her favourite activity, Boccia. The competitiveness comes out in her, it’s hilarious to see!

“Her personality just comes out, and I think Headway did that for Sophie.

“It’s lovely to see it back again.”

Warren, Symra, Avril and Sophie are just some of the many people who have experienced loneliness, and results from Headway UK’s research show that a staggering almost 87% of brain injury survivors and 85% of carers feel lonely after brain injury despite never having felt lonely before the injury.

Survey results

Earlier this year, Headway launched two surveys: one for individuals with a brain injury and one for carers to share what loneliness and isolation after brain injury looks like.

Key findings from the surveys also highlighted that:

• Isolation is commonly experienced: 83% of brain injury survivors and 69% of carers feel isolated from friends after brain injury.
• Social activity changes after brain injury: Almost two thirds of survivors (63%) and just under half of carers (45%) are unable to participate in the same social activities as they did pre-injury. 32% of survivors and 24% of carers are no longer invited to social events, and around a third (38% of survivors and 31% of carers) are no longer contacted by others. 37% of survivors can no longer travel to social events. Being unable to work is a significant barrier to socialising for many brain injury survivors (41%).
• Headway is here to help: 72% of survivors and 71% of carers who attended a local Headway charity or volunteer led branch felt that attending helped them to feel less lonely. They said how Headway help them to connect with others, giving them space to be themselves, directing them to services they otherwise may not have found and giving them a sense of purpose and direction. 63% of survivors and 56% of carers who attended their local Headway felt that attending improved their confidence.

Colin Morris, Director of Communications at Headway, said: “Loneliness and isolation extend far beyond being alone.

“We See You focuses on the many forms this can take- from social loneliness and physical isolation to digital and financial disconnection.

“We See You also highlights the profound impact a brain injury has on loved ones and carers. A brain injury doesn’t just affect the individual - it can bring life-altering changes to routines, relationships and the dynamics of entire families and friendship circles.

Download the report

To view the full results of our surveys, download the full report or a short-form summary to explore the results in more detail.