When you live with an invisible condition, like a brain injury, it can leave you open to people misjudging you because they don't understand. Similarly, we can find the voice in our head tells us that people are thinking badly of us even though the person hasn't said anything. We become self-conscious of our different behaviour, so it almost doesn't matter what others do or don't think, we are uncomfortable with ourselves either way. There are some automatic actions that we cannot hide, and anyone can see. These are highly embarrassing and can leave us feeling dreadful.
What it's like a have a spontaneous and unseemly behaviour
One of the most obvious things that affected me was how I sneezed. I probably always felt a little conscious of sneezing, as I had always tried to control them. When I was little, my mum would tell me off for holding my nose to try to stop the sneeze, but later I learned to make sure I made very little noise when the sneeze came. I can't explain what it is that I do, but it became second nature. People would say my sneeze was almost cute, sounding more like it came from a mouse. But I couldn't do this self-taught trick following my brain injury, leaving me making the loudest noise possible, drawing much-unwanted attention. Worse still, I wouldn't be able to tell my mouth to close, resulting in me spurting everywhere as I sneezed. The sight was disgusting, and I'm sure it was revolting for anyone who was within spitting distance of me. If I were fortunate enough to have enough warning that it was coming so I could use a tissue to cover my mouth, it would be saturated. Honestly, I didn't know I could even produce so much saliva.
No one ever made nasty comments when this happened, but that didn't stop my mind from telling me that they must be thinking terrible things about me but were too polite to voice them. This isn't any reflection on them and doesn't mean I think that must be mean spirited people. It just means I was so ashamed of myself that I couldn't imagine how it would be possible for them not to think I was repulsive. Thankfully a few years into my recovery, I managed to regain my mouse-like sneeze, and more importantly, the ability to close my mouth when doing so. As we continue to wade our way through the current pandemic that is Covid-19, I can only imagine how humiliated I would have been if I'd been drooling into my face mask like this. As our concerns with germs and viruses are heightened, and rightly so, I think I would have never been able to show my face.
The other behaviour which I still struggle with is some of my facial expressions. Whenever I try new food, as my taste buds start to report the new flavours, I pull a face. I can feel the muscles contract, but I can't stop them. Even if I really like it, if it's a flavour or texture that I haven't had before my face looks like I absolutely hate it. And this isn't just for the first bite; it goes on until I've had this meal enough times for my brain to have accepted that it understands what it is. That means I'll not only do it throughout the entire meal, I'll probably do it throughout the next time I have it too. That means whereas before I liked trying new things, I dread doing it in front of others. James, my partner, knows my face will do this, yet I think even he isn't sure if I'm just being generous when I claim to like the new thing that I've just tried. This has left me terrified of sampling other people's cooking. Not because I'm fussy or hard to please, but because I'm sure my face will leave everyone else thinking that.
If you have a brain injury survivor in your life, please consider this...
The point I'm making is this: There might be some peculiar, but involuntary things that people do as a result of the brain injury that you can't see. And whilst you might not have ever pointed it out, people still might withdraw as a result of it. They may not even bring it up and highlight it as a cause for their self-consciousness, leaving you unsure if they even know that it happens. All you know is that you hear from them less, or they turn down any invitations a lot. Whilst we are continuing to social distance, you might not have noticed the brain injury survivor in your life has withdrawn because socialising for everyone has become harder. But please still let them know that you are there. I know some brain injury survivors struggle with phone calls, and others like me, find video calls draining. So maybe now is a great time to bring back the art of writing a letter. It's really heart-warming to receive a handwritten note, and it's there to refer back to when times are hard. Just a suggestion, but I'm sure whichever way you do it, it will be more appreciated than you'll ever know.
Have you experienced something similar? Let us know in the comments section below.