As part of Action for Brain Injury Week 2022, the Headway network is sharing the stark results of the See the Hidden Me study which found that 76% of people with brain injuries 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 people with brain injuries and their carers face after the injury.

2,682 people took part in the study - 78% were people with brain injuries and 22% were carers.  The results showed:

76% experience daily problems as a direct consequence of their brain injury being hidden

• 67% have at some point struggled with understanding the effects of their own brain injury
• 52% have experienced a difficult situation as a direct consequence of their brain injury being hidden
• 71% have experienced difficult issues in a shopping setting as a direct consequence of their brain injury being hidden
• 67% felt their friendships had been negatively affected as a direct consequence of the effects of their brain injury being hidden
• 55% felt that their relationship with their spouse/partner had been negatively affected as a direct consequence of their brain injury being hidden
• 70% of carers felt their relationships with others have been negatively affected as a direct consequence of the effects of brain injury being hidden
• 75% of carers have personally faced problems as a direct consequence of the effects of brain injury being hidden

86% of people affected by brain injury (individuals and carers) felt that a lack of understanding in society is one of the main challenges to living life with a hidden disability

Some messages to others:

1. Be patient 

“Please take a step back & take time to understand that an ABI can affect a person’s ability to think logically and within normal time limits.” – Anonymous
“Give me some time to process my answer.” – Shirl
“Consideration and understanding we need space and time.” – Zarqa
“Give the person time to answer your questions and don't make them feel pressured into providing you with an answer as they get overwhelmed.” – Rebecca

2. Don't judge 

Study respondents were keen to remind others not to judge others based on appearances. 

“Just because I appear normal, does not mean I am. I struggle a lot with memory and concentration and processing information. But, I try and mask it, so I don't feel a burden on others.” – Anonymous
“Try walking in my shoes for a week before you judge me because if you went through half the things that myself and my family have been through in the past 7 years you might think twice before judging anyone again.” – Paul

Further, some wanted to remind people not to judge them based on behaviours caused by the effects of their injury.

“I don’t remember things. I will sometimes forget conversations ever took place - be patient with me, it’s not intentional!” – Ian
“I seem selfish or distant at times. But it’s because I can’t cope in the situation. Give me space and understanding.” – Anonymous

3. Learn about brain injury 

Brain injuries are complex and can lead to a myriad of issues, further complicated by the fact that no two experiences of brain injury are ever quite the same.  Respondents commented on the benefit of others learning about brain injury so they can better understand how to offer support. You may wish to utilise these pages of our website or Headway - the brain injury association's vast information library to learn more.

“Take time out to understand my vision and memory problems.” – Anonymous
“Education is key to helping, including, assisting and wellbeing of all involved with person with any disabilities... overall I think the more people are educated on disability the better they can understand and help.” – Tantra

4. Just ask, and listen 

Some said they would appreciate simply being asked by someone how they are or if they need any assistance.

“Please educate yourself about brain injury and don’t be afraid to ask questions. Don’t write me off, I’m still in there, it just a work I process. Finally, don’t let someone recover from brain injury on their own. Make time for them.” – Anna
“Ask me what I think I might need support with / reassurance of in a given situation.” – Fiona
“If you are unsure then please ask, that way then you will be more aware and be able to help me with difficult day to day living.” – Sharon
“Just ask... are you okay how are you doing.” – Anonymous

5. Don't undermine the effects of brain injury 

A cause of frustration for some people is when others attempt to undermine the impact of their injury. The phrase “I know what you mean.. I’ve got a terrible memory too!” was the number one statement listed on Headway’s previously
published ‘top ten things of what not to say to someone with a brain injury’, available at 

www.headway.org.uk/news-and-campaigns/news/but-you-don-t-look-disabled/.

This issue was raised again by requesting that others not liken their regular day-to-day experiences to that of living with the consequences of a brain injury.

“It’s not like a normal headache as everyone says ‘I get them too and my memory is awful as well’.” – Michelle
“Fatigue is not like being tired. It’s not something I can control, although I can put processes in place to try and mitigate it presenting.”– Michael
“Don’t try and relate - you won’t be able to. Understand every brain injury is completely different.”– Anonymous

6. Recognise the changing and unique nature of brain injury 

“I say some days are good, some are bad and I never know what it will be until I wake up and even then can be hard to tell.”– Clare
“Not all disabilities are visible. Everyone brain injury is different. And it affects everyone in different ways. Be kind, caring , understanding, have broad shoulders don't that things personal. Be willing to adapt to the person with a brain injury.”– Elizabeth
“We don’t understand our own injury most of the time so expect others to struggle with it. It changes every day so sometimes we may be able to do things that other days we cannot.” – Anonymous
“Just 'cos you cant see a disability doesn’t mean you can dismiss what someone is saying or maybe needing. Someone’s needs can really vary and completely change and its harder cos of the fluctuating, unpredictable and very individual nature of the disability.” – Anonymous

This study shone a spotlight on the otherwise often hidden consequences of brain injury, which affect not only people with brain injuries 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.

Huge thanks to every person who took part in the study and shared their experiences.