We all heard it. “What the heck? You look fine to me!”
Or “Its been months! Get over this brain injury stuff! Move on already!”
#1 Blame it on Hollywood!
Movies and television have spread so much misinformation about brain injuries it is practically criminal!!
Hollywood has convinced people that if you have a brain injury you have to look it! You have to drag one of your legs, you have to have speech problems, you have to look severely disabled.
Nothing could be further from the truth! The majority of brain injuries are not visible at all. You try to express how much you are struggling and the response is “You look great!”
And that is the second reason:
#2 You do look great! You look normal.
People are used to thinking of injury in terms of a broken bone. Subconsciously they are looking for the cast, the bandage . . . the visual evidence of your injury. And you don’t have it so their brains draw the conclusion that you must not be injured.
The interesting thing about this one is that it is an automatic processing in their own brain that the person is doing and they are not even aware of it.
For example, we learn very early in our life to equate a glowing red burner or flame on a stove as “Hot”. We learn it so well that it becomes automatic. Each time you see a stove you do not laboriously have to think through or reason out that a glowing burner means hot.
The exact same thing is going on in people’s heads in relation to equating injury with visual cues. Their brains have learned to equate the lack of obvious signs of injury with “non-injured”.
And that leads right into the third reason that brain injuries are so misunderstood:
#3 Brains control everything about us!
Until a person’s brain is injured, we do not realize at all how much we took our brain for granted.
All the little automatic things – from knowing how to add two numbers to knowing what a paintbrush is for or how to read, or when you get to the store remembering to look at a grocery list you just made . . . All the even more important things like who we are, our own sense of identity, the “me” that you have always counted on from the inside . . . all of that is automatic . . . until it no longer is.
It is dreadfully hard to explain that to someone who has not experienced it because they really don’t get that our brains are essentially us.
Since you still look like you and sound like you, it is extremely hard for another person to grasp how deeply you feel and know you are no longer the you that you were.
And it is even more difficult for someone to grasp how big of a deal that is and how lost you feel. If you aren’t you on the inside then who are you? And are you always going to be like this? Are you ever going to get you back?
And that brings us to the fourth reason brain injuries are so misunderstood:
#4 Brains take a very long time to heal and remap!
We are used to the healing we have seen all our life – the cut that heals in a week, the broken bone that heals in six, the bad sprain that heals in ten. Heck, after open-heart surgery most people are able to return to work in six to eight weeks!
But stop and think about the brain. It took years to develop! That is what the majority of childhood and young adulthood is about – developing the brain. Then, if you are an adult, you have had even more years of refining your brain.
And what is developing and refining your brain? It is the development of a very complex neural network of connections. The refining is the brains ability to strengthen and speed up the neural pathways we use the most. A brain injury disturbs those delicate intricate pathways and connections.
Healing and regrowing of neurons is slow.
Sadly nerve tissue is some of the slowest growing tissue in our body – likely because of how complex it is. Then, in addition, remapping all the intricate connections takes an even longer time.
So how can I get people to understand my brain injury?
Show them this article.
I am not saying that because I authored this article. It is the reverse. I authored the article specifically so you can show it to friends and family.
Show them the High IQ TBI article – there is a lot of information in there no matter what someone’s IQ.
Talk to the people you need to educate. And understand that you do not need to educate everyone. Energy is limited when you have a brain injury. Choose the people who you need to have understand.
And choose people who want to understand. You will find that those are the people who really care about you.
Use the term “brain holes”.
I find using the term “brain holes” works well. Yes, it is not a medical term. But naming a problem a “brain hole” is something that makes the concept of missing neurons easier for people to understand.
In fact, it works well specifically because it gives people something like the visual cue I mentioned in #2. “Brain Injury” is too broad and amorphous. “Brain Hole” feels more concrete. They can imagine it.
Use Before and After Examples
Do your best to use examples of how things used to work/feel in comparison to how they now work/feel. Again, using descriptions that people can relate to helps a lot.
For instance, I used the analogy of going from a sleek car with a smooth automatic transmission to suddenly finding myself in a clunker with a standard transmission with a clutch that keeps slipping.
Some Never Will. Let them Go.
I wish I did not have to say that!
But sadly, letting go of friends and even family is one of the biggest heartbreaks of having a TBI.
Some people will not want to try to understand. They are adamant in their beliefs and opinions that you are “faking it to get attention”; that “you need to just get over it”; that you are “not really injured” because you “look fine”.
Some people will get tired of trying to understand. They will get impatient with the process. Most people can truly not grasp or understand how extremely slow and incremental brain healing and remapping is.
They may have supported you and been understanding for a while but somewhere along the line they paste a label on you and refuse to ever be around you enough to experience if the label still fits.
Yes, I am serious. Just do a real simple one. Ask a friend to help you set it up. It is dead-easy on WordPress.com or Google Blogger. (Use a pen name or just your initials because it will free you up to not worry about what you say or any perfection issues. Plus, no one will find it if they google your name.)
Write. Just write. Just write what is going on for you.
Writing will help YOU get a grasp on what is going on for you, which will then make it easier for you to explain it to others.
Writing will also help you be more compassionate with yourself. Interestingly, as you become more compassionate with yourself, others will become more compassionate with you too!
Plus, for those who are truly trying to understand and be supportive, sometimes reading what you have written is the best way to help them grasp what it is like for you on the inside.
What problems are you having being understood?
What is working to help others understand?