One of the hardest things about living with a brain injury, is explaining it to others. (Which is one of the reasons I started this blog.)
Finding the words
I mean, how do you explain it during a conversations in simple terms? How do you explain that your whole life suddenly changed? The way you react to things, the things you can do and the fact that this can change daily?
How to explain the fear you feel when your body ‘surprises’ you? When you suddenly have to deal with hyperventilation or panic attacks, when you notice you suddenly can’t verbalise your thoughts or when the outside world suffocates you?
How do you put into words your everyday struggle for balance? A balance between doing things and resting, to prevent (as much as possible) the fatigue and brain fog, while at the same time trying to mute the different stimuli from the outside world?
Dealing with others
How do you react when you get the respons “I get tired too” or “I feel like that even without a brain injury”?
Do you have the energy to explain why it’s not the same? That you only now realize how inadequate language can be? Should you use this opportunity to create awareness or do you hide your irritation and try to let it go?
What do you do when you can’t answer a question? Simply because your brain got overwhelmed by all the possible answers, as it was such an open ended question?
Or when an innocent comment really hurts your feelings, because you suddenly realize that people really don’t understand? What do you do when you feel like a burden, because people always have to accommodate to your needs?
What do you do when you start to think that the mask you show the outside world, might have been too good?
Who am I
Lately, these questions have been on my mind a lot. I think it’s the result of meeting so many new people.
As this means that I’m often explaining my brain injury. Which I don’t mind at all. But at times the responses get to me and not in a positive way. I’ll begin to doubt myself again, am I explaining it wrong? Am I complaining too much? Shouldn’t I be able to express myself more clearly?
And maybe my expectations are too high, seeing that I’m mainly meeting other travellers. Maybe these conversations aren’t the right ones to increase awareness.
But still, my brain injury is a part of me and I’d like to be open about it.
The art of listening
I don’t have the answers to these questions. All I know is how grateful I feel whenever I meet someone who really listens. When someone doesn’t inmidately responds with their judgement or own experience.
It has made me aware that I too can improve my listing skills. If I appreciate this so much in others, then I too should try to listen attentively without judgement.
I cherish those rare occasions when I meet a fellow brain injury warrior/survivor/hero. Here I can find true understanding. Which is probably true for all life changing events. There is a connection, or bond, that comes from experiencing a similar thing.
Now I most certainly don’t wish a brain injury to happen to anyone. But maybe we can try to cultivate our listing skills. To try to give someone our complete attention without immediately sharing our own experience or judgement.
Resolution
I can’t change the people around me, but I can do things differently. A wise person (Mahatma Gandhi) once said “be the change that you wish to see in the world.” That’s why I’ll be doing my best to be a better listener.
Thank you so very much for posting this. It is exactly what I wanted to say. I had a mini stroke caused by a blood clot in my neck. It’s so nice to see that others are out there, like me.
Thank you for your kind words! I agree, knowing that you’re not alone always helps me when I’m struggling. All the best to you!
7 years from a moderate TBI with post concussion syndrome. I am convinced a normal brain can not really comprehend a TBI. They take care of you. They deal with everything you need to improve. But a forever changed brain is incomprehensible to a normal brain.
For me this is the reason why contact with fellow survivors, online or IRL, is so important. I wish for you that you have someone that truly understands how difficult our struggle can be.
For me I’m so tired of explaining the unseen of y I am the way I am. I’m so tired of people without a tbi say they have the same things or u don’t look like ur disabled or u don’t act disabled. I just keep replaying this saying over and over in my head ” y did this all happen to me”. And that ” I wish I was normal.”
I’m sorry that finding a way forward is so hard for you. I hope that it helps to know that you’re not alone 💙
Just found your blog, thank you! I recieved a tbi in 2018 and my life totally changed. It is so helpful to know what I experience that I am not alone. I always hear ” well you would of got to this point when you age anyway” or “I get anxious too” or you look fine to me. My daughter understands and she is my savior( for lack of better word, which I can not find😕). Looking gorward to reading your blog n again thank you so much!! Yvonne
Thank you for your comment!! I’m so glad you found it to be helpful! Yes, having an invisible disability and having to adjust to a new normal is incredible hard. And we must certainly are not alone, your struggles are valid. I wish you all the best 💚
This blog echoes how I feel a lot.
Sometimes we’re met with blank faces or when someone says “I get tired too” it can be tricky to deal with.
Now I use it as an opportunity to educate. I find people can be wary of what they don’t know so I applaud you for sharing your experiences on your blog. I’m doing the same on mine.
The Spoon Theory is a great way to explain what it’s like trying to get the balance right between doing and resting.
Thank you! Yes, some days I find it particularly difficult to deal with the “I get tired too” comment.
Aha, yes I use the spoon theory when I know I’ll have the time to properly explain it. (Or maybe I should just practise the explanation more 😄). And I’ll check your blog out!
I love this article, learning how to explain your injury is so difficult. People want to be there for us – but we have to articulate how they can best help us. Thank you for this blog
Thank you for your kind words and for taking the time to leave a comment! Well said, we have to try and articulate how they can help us.
Well written! During the time I have read your blog, you have been very helpful in my quest for understanding my TBI. Thank you for this, and wishing you a continued joy filled journey. I really hope that you make your way to Sweden so we can meet!
Thank you for your kind words!! I’m so happy you found the blog to be helpful, you’ve made my day! And I’d love to meet you in person as well.😊