1.) “You’re so lucky!”
I am lucky to be alive! Lucky that the ambulance crew were so quick to take me to the hospital. Lucky to have survived at all and I am lucky that it happened at the time that it did as without modern medical technology I would have never survived at all. There is no doubt in my mind that luck played a major part in how I am today but telling me how lucky I was, was quite possibly the worst thing you could have said to me or in fact anybody that has survived a traumatic brain injury (TBI)!
From my point of view, I was a student in Manchester enjoying my life. I had gone for a night out then suddenly, I was in the hospital with no memory of what happened. I had cognitive difficulties, I couldn’t walk, could no longer see or speak properly, I couldn’t stand noise, bright lights or too many people talking at once and was told that it might not get better. I didn’t really feel that lucky! What happened to me on 15th May 2007 was probably as likely as winning the lottery, but between you and me, I’d have much rather have found £20 and got a kebab and a taxi home!
2.) “Yeah, I know what you mean, my memory is bad too!”
Being a bit forgetful and having a memory problem because of a brain injury are two entirely different things. Forgetfulness is something that happens to everyone, but memory difficulties due to an injury means that memories can physically be prevented from being stored and retrieved. Expecting somebody with a memory problem to remember something if they ‘think a bit harder’ is like expecting someone who is short-sighted to be able to see something if they just ‘look a bit harder!’
3.) “There’s nothing wrong with you, you look fine!”
It is not always the case but it’s possible that a brain injury can have no visible physical symptoms, making the person at first glance look totally fine and healthy. A person with a brain injury has injured their brain.
You know what you can’t see? Someone’s brain. The injury is hidden and therefore, so is the disability. They will have never experienced bigger and more confusing changes to how they think, how they see and experience the world. It felt like I was in a different body on a different planet. So, it may come as no surprise to you that telling somebody with a TBI that there is nothing wrong with them may be somewhat insulting.
4.) “There are people much worse off than you!”
This, I suppose, is a classic reaction and may well be meant as a way of cheering the person up. Trust me, it has never cheered me up! Telling somebody who is depressed about something even more depressing, surprisingly doesn’t bring any joy to the situation.
5.) “It’s time you moved on, the accident was years ago!”
I remember someone saying this to me, I knew it was the wrong thing to say, but I had no answer for them. Whenever I’m in a slightly stressful situation, my brain slows right down like somebody has put a spanner in the works and the cogs in the thinking machine don’t turn as fast.
Brain injury, particularly severe brain injury, almost always results in irreversible brain damage and the way a person recovers is by accepting what has happened, adjusting and by learning new ways of doing things that their TBI prevented them from doing. Sadly, it’s not as simple as getting a grip and moving on.
6.) "Don’t refer to brain injury as a “mental illness”
Whilst TBI can cause a number of psychological effects such as anxiety, obsessiveness, frustration and depression, TBI itself is not a mental illness. It is, in fact, a cognitive impairment meaning that the brain no longer works as efficiently as it did before the trauma. It may increase the chance of mental illness developing, but a person with a TBI is not mentally ill, they just require a bit more time to process information.
7.) "People with traumatic brain injury are not 'thick'"
TBI can affect a person’s ability to remember, to form new memories and to speak as articulately as they did before the trauma, but it is unlikely to affect their intelligence. It is not the person’s intelligence that is affected but their ability to apply that intelligence. Do not speak down to them, just keep in mind that they can be easily confused so you should speak clearly, not necessarily slowly.
8.) "When are you going to be better?
This is one of those situations similar to ‘how long is a piece of string?’. Every brain injury is different, and it depends on your definition of ‘better’. If you mean 100% ‘better’ then the answer is likely never, as brain injury is usually permanent. Improvement and recovery is usually the brain’s adjustment to the injury and finding new ways of doing things they have lost the ability to do.
9.) “Let me do that for you”
It’s OK to offer help in certain situations but by always offering to do things that someone with a head injury is struggling with, only prevents them from ever relearning those skills.
Having had a head injury myself, my ability to learn new skills has been impaired. This has meant that in the past it has been very tempting to accept someone’s offer because it is the easier option. With hindsight, I realise it is better to be left to work things out on my own, even if it is a struggle. It encouraged me to become reliant on others to do things, so I never learnt for myself. Whist it may be quicker to offer help in the short term it becomes a hindrance in the future. If they’re never exposed to a challenge, they will never learn how to overcome it. So, in summary, let them struggle (within reason)!
10.) "You’ve hardly done anything all day!”
A way that brain injury affected me is by making me spectacularly unproductive. I would always start things and forget about them minutes later, meaning that I left a trail of incomplete tasks behind me wherever I went. This was due to having poor concentration and attention. Drawing attention to this would have made me feel ashamed and my impaired processing skills meant that I didn’t know what to do with the information you were giving me.
Rather than criticise and tell them what they are doing wrong, you should be positive and suggest ways in which they could do it better. Start small and aim at first to complete just one task per day. Write down this task (if it’s written down it won’t be forgotten) and tick it off upon completion. This gives a sense of accomplishment which soon becomes quite addictive.
The reason I suggest starting with one task per day is to keep to a manageable workload. If the ‘to do list’ becomes too big, it can easily become overwhelming and the feeling of anxiety could mean that nothing at all will be done.