Londoners’ experiences of life-changing injuries

Recovering and establishing a new identity after injury or acquired disability

The many changes people we talked with experienced after injury often led to them feeling like their identity changed. Sam said, “Your identity’s been dismantled. You have to work out who you are again and feel confident in being like that”. This could be distressing for people. Brian said he felt upset because “the person you were before is gone, they’ll always be gone”. This was also difficult for the people around them to accept.
For some, an important part of recovering involved accepting and coming to terms with their changed selves and finding ways of managing the challenges they faced. Christopher said he didn’t want to be “that individual that’s got a brain injury. I want to be me.” Elcena said it was “a different kettle of fish” becoming disabled as an adult, rather than being born disabled, while Brian described the experience as weird. People thought perhaps they were idealising the person they were before (Amy) or “looking at the past through rose coloured spectacles” (Christopher).
People’s identities were also changed by the things they were no longer able to do, like going back to work or helping out around the house. Bill said after injury he felt life “wasn’t your own, even at home”. He stopped carrying money and keys after his injury because everything was being done for him, and he felt he didn’t need to.

People were determined to recover as best they could. This “grit and determination” (Jack) was something they felt they always had, but didn’t know its full extent until they were challenged by injury. Setting realistic goals and targets, repeatedly practicing things, forcing yourself to do things you find difficult, persevering and maintaining hope were important for people during recovery.
Some people felt they had recovered and were back to being who they were before injury. Returning to doing the things they did before injury was a marker of recovery. Barrie got back to singing, which has always been a big part of his life. Others were still trying to recover, even those whose injuries had happened more than ten years ago. Some felt they were unlikely to get any better or regain any skills that had not returned at this stage. But others were more positive. Adrian said he was still finding out new things about himself and new ways in which to manage the effects of his injuries eleven years on.
 
People spent various amounts of time recovering from the physical, mental and emotional effects of the life-changing injuries they sustained and the treatments they received for them. Recovery was often described as a frustrating process and Nick Z said that things usually got worse before they got better. People often compared themselves to others who had also sustained similar life-changing injuries. Amy felt this was unhelpful, but some people found this useful. Knowing others more severely affected by their injuries made Adrian feel grateful because he wasn’t as badly affected as they were.
Sometimes people’s prognosis immediately after injury was “gloomy” (Simon A) and their injuries so severe their families were warned they might die. Health and social care professionals, like physiotherapists, occupational therapists and psychologists, were instrumental in helping people’s recovery.
Further treatments or operations after injury sometimes gave people hope. Bryan felt his recovery from his two brain injuries and hearing loss started when he was offered an operation to improve his hearing.
Families also played a significant role in recovery. Raymond said he was motivated to do his best to recover for his “loved ones”. Marina said what her son Daniel had to do seemed daunting at first, but he made a remarkable recovery. Some people felt isolated and didn’t seem to have the support they needed from their family. Jane felt that her family didn’t understand her brain injury because her father previously had a more severe brain injury.

Life after injury usually involves quite a lot of uncertainty. People didn’t know how long it would take to recover, what they could recover or if they would recover at all. Health and social care staff usually couldn’t accurately predict this for people. Staff sometimes estimated the length of people’s recovery, which varied from a few months to several years. Kenneth was told he might struggle for years, which he found a “scary” prospect.
Even though people usually wanted to get better and get their lives “back to normal” (Wesley) as quickly as possible, some were never going to completely recover because the effects of their injury were permanent. So having a long period in which to come to terms with injuries and changed life was seen by some as a positive thing.
People said initially they progressed rapidly in their recovery and then it slowed down or reached a plateau. John said things fall into place slowly and Dave said that every little achievement was welcomed along the way. When they were feeling frustrated, it was important for people to remind themselves of how far they’d come.

Immediately after injury, some people realised the “monumental task” (Jack) that was ahead of them. But after brain injury, people can lack awareness and insight, which means they may not understand the extent of the effects of their injury. Even when they gained insight and realised what had happened them, people were still sometimes reluctant to accept their impairments.

(See also ‘Body image and disability’) 

Last reviewed May 2019.

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