As part of Action for Brain Injury Week 2022 (16th – 22nd May), Headway Leicester is sharing the stark results of the See the Hidden Me study which found that 76% of brain injury survivors experience problems on a daily basis because of the hidden, and often misunderstood nature of brain injury.
When a brain injury occurs, in a moment of trauma or medical emergency, the life of the person affected, alongside the lives of their loved ones, are changed in an instant. The See the Hidden Me campaign focusses on raising awareness of the battle that survivors and their carers face after the injury.
The study was led by Headway – the brain injury association. In February 2022, they launched a survey to explore the feelings and experiences of those affected by acquired brain injury around brain injury being a hidden disability. The survey was completed by 2,682 respondents, providing a large sample to gain an accurate picture of the emotions and challenges of living with a hidden disability.
Key results:
- More than half (55%) of brain injury survivors feel they have been unfairly treated as a direct consequence of their brain injury being hidden
- Two thirds of friendships (67%) and more than half (55%) of relationships with a spouse/ partner have been negatively affected as a direct consequence of the brain injury being hidden
- 9 out of 10 (86%) of people affected by brain injury (survivors and carers) felt that a lack of understanding from society is one of the main challenges to living life with a hidden disability
A message for others
The three most popular words chosen by survivors to sum up how their hidden brain injury made them feel were: Misunderstood, Frustrated and Vulnerable.
Given the fact that a lack of understanding from society was the highest rated challenge of living with a hidden disability, the responses provided in this section are of particular importance and relevance in order to improve this widely reported lack of understanding about the challenges of living with a hidden disability.
Be patient
Don’t judge
Learn about brain injury
Just ask, and listen about brain injury
Don’t undermine the effects of brain injury
Recognise the fluctuating and unique nature of brain injury
The study shone a spotlight on the otherwise often hidden consequences of brain injury, which affect not only brain injury survivors themselves but the wider caring network around them, affecting opportunities, relationships and emotional wellbeing.
The concluding message from respondents is clear: be patient, kind and take the time to learn about brain injury.
By following these maxims, we can all improve our understanding of what living with a hidden disability can be like, and therefore provide the right type of support.
