As I write about my experience of brain injury a lot, you might be surprised when I say sometimes I can’t explain how I feel. There are times this invisible heavy cloak descends on me. I’m trying to get on with a “normal” life whilst the cloak drags me down and wears me out. But the casual observer knows nothing of the cloak, just that my behaviour is different. Weirdly I have no motivation to even try to communicate. It’s just too much of an effort. I imagine when this happens I have more in common with an overworked Donkey, than a woman in the prime of her life.
As I appear grumpy, others think I’m annoyed at them.
We’ve all experienced that person who makes you feel like you can’t do anything right. You feel like you should be apologising for everything. Or making special efforts to win them over. Well, the cloak turns me into that person. It’s not intentional. I’m not really criticising everything, but I’m not showing any enthusiasm either. My brain injury just turns off the communication switch for a while. I still have emotions, I just can’t express them.
As this behaviour doesn’t give them anything to work with, I understand how it makes them insecure. Particularly since females are known for going quiet when they are angry. My partner, James, will ask if he has upset me with a tone similar to a child who thinks they have disappointed their parent. Even when I tell him to ignore my behaviour he seems unsettled. Perhaps he thinks that is just an excuse so I don’t have to explain what’s wrong?
If you have been reading my blog for a while, you will know by now James is my rock. And yes I am guilty of sometimes being a battleaxe just because his socks aren’t in the laundry basket. But when my brain injury cloak is on me, my behaviour is nothing to do with anything he has or hasn’t done. So the thought that I am unintentionally chipping away at his confidence is awful. I don’t want to make him question himself when he is completely innocent. In fact I don’t know where I would be without him.
My tips on dealing with this situation.
My not an expert or a counsellor, all I can tell you is how I’m dealing with this. It has taken me time to get to this point. So if highlighting this helps smooth another persons relationship, it’s worth it.
- Acknowledge that it happens. Just because I don’t mean to make James question himself, it doesn’t mean it’s OK. I didn’t recognise it before as I didn’t have the ability to. But now I do, just ignoring it won’t solve anything.
- Talk about it when you can. Even if it’s days later, I find a moment that it good for both of us to run through what happened. James is very understanding, which makes it easier. But even if the person in your life struggles to put themselves in your shoes, it’s important they see you making the effort. Most people will find it touching and sincere, which will help them see your bond isn’t broken.
- Have a signal. Now I have described this as the heavy cloak feeling in this way, that’s all I need to say in the future. Then he will know that I can’t go into detail during that moment, but he doesn’t need to worry. But you can make a single where you don’t even have to say anything. It could be a long squeeze of their hand, a kiss on the tip of their nose (as long as they don’t have a cold at the time) or just a simple knowing nod.
I sometimes am guilty of thinking that as he knows I have a brain injury, he should have got used to my behaviour by now. But that’s absolving myself of responsibility for how my actions effect him, which isn’t fair. Yes it’s true that I can’t help my bad days, but he isn’t to blame for them either. So he shouldn’t feel like he has to tiptoe around his home in hope I won’t use him as a punching bag. (Just to be clear, I’m not violent I just mean verbally.) I’ve said it before in Support carers, but it’s important we don’t forget they are in this boat too, even though none of us planned this.
17 replies on “How to avoid behaviour related misunderstandings provoked by brain injury”
“Heavy Cloak” is a pretty good label for those quiet periods we go through. Sometimes brief … maybe an hour, but sometimes a day or so. Physically, were ok. No pain, no problem. Mentally?? who knows!? It’s simply private, quiet time. No idea why or what brings it on, but as long as the people who surround me understand it’s not against them, it’s all good. Each day is a new adventure in life.
My accident was 17 months ago, and each day I am thankful that I’m here. I am blessed and have an amazingly great life. Thank you Michelle ✌
Love your positive attitude
I have suffered Multiple Brain Injuries. My first Brain injury was at the age of 6 years old creating a developmental disability as well. It has been a challenge for me and yes the behaviors are extremely similar as you have explained. I have Steven who is extremely understanding and is also my rock unfortunately he gets the blunt of my behaviors. He is so patient with me I am so lucky to have him in my life.
It seems like every time I sustain another head injury I have to start all over again. I have duel diagnoses which has created a serious mental Illness created by my Brain Injuries.
I also appear grumpy, others think I’m annoyed or coming off as aggressive at them. One of the other issues I have is I am deaf in one ear and I tend to have my voice go up as I talk to someone so people think I am yelling at them when I am not. When People think I am being mean or aggressive I am not meaning it to come off like that but others see it that way. I tend to blame my so call aggressive behavior on me being a New Yorker. I do not even realize I am being aggressive however when people tell me I am being aggressive I go the opposite direction to try to change it and then they tell me I am being a condescending bitch.
It is very hard to keep my mouth shut. I have always been told I have no filter. My mouth tends to get me in trouble at times however it has protected me A LOT. I am not 100% sure if I understand your analogy of a “heavy cloak” however, I have always been told I am extremely blunt, crass, straight forward, and not tactful in any manner at all.
For me the “heavy cloak” is a physical sensation so I am aware I’m in a phase where I might appear mean.
It sounds like you might not have any indication that you’re giving the wrong impression, which is harder to deal with.
I understand why you try to blame it on your cultural background, but see if it helps explaining its your brain injury. I know lots of people will struggle to understand, but those who try are worth the effort.
This describes me so well. The cloak fits…. But I struggle to find the words I need to express my meaning. This is one difficulty that I have been left with, after my stroke & is one of the things I am ‘working on’. Fatigue worsens my ability to express myself. I was very articulate before my stroke, I taught autistic children, & when chatting to family or friends etc. or in a pationate discussion, I now struggle to find the correct wording (the English language is brilliant, I can find an alternative word that surfices, but that never seems to convey my exact meaning & I can get frustrated at that) I can often appear to forget what I am talking about, but I am desperately going through my ‘brain files’ searching for the word I’m looking for. Sometimes I can tell you what letter it starts with, describe it in some way, but not the word itself. I tried to explain to my husband, where something he was looking for was, …. I described it as a room in the garden, made of wood, square in shape with an apex roof, where I keep the dog food….. He got it…. “the shed” we just had to laugh, what else can I do.
I find that if I am in a confrontation with my husband, I cant follow the conversation or if there is a pause I very quickly forget what he has said. I often find, he thinks this is ‘convenient’ & I’m just saying this not to continue the conversation.
I have exactly the same thing with struggling to name things and people. How is it that we remember the first letter? It’s like the brain is just teasing us. It knows the answer but is hiding it and use offers up a clue.
I like the idea of a signal because I cannot always explain myself even when I want to.
Yes I’m the same Dawn. It’s frightening isn’t it. But at least with a single it allows them to know they should disregard any offence and when you feel better you might be able to talk about it more.
Yes, everything has changed, but fortunately for me I don’t remember anything the next day. That’s what I love the most about my TBI, I definitely don’t overthink.
Well at least you are able to find the positive in your situation. I hope that means you find many reasons to smile each day.
Hello
I am 3 years our from brain surgery and this heavy cloak is very familiar to me. I unfortunately have had trouble explaining this to anyone. I sit here tonight with a friend who hasn’t connected with me (even though I have reached out) I fear she is done with me and my moods. My life turned upside down that day I had surgery – I feel like I still don’t know my own self anymore.
Mary I’m so sorry to hear that you feel your friend doesn’t connect with you. Perhaps they have something happening in their life at the moment which is distracting them but they’re not ready to talk about? I hope this is just a bump in your relationship and you get back on track.
My tumor was removed 3 months ago. I am still trying to figure this out. With God I know I will be completely healed. I am so thankful I found this article! Please keep them coming! It’s refreshing to know I’m not alone!
Kymberlee, to go through brain surgery is terrifying so I’m so pleased that it seems it was successful. You’re definitely not alone 🤗
Hi Michelle!! It’s been 30+ years since my TBI. I met my husband about 4 years after my car accident, and he thought that was enough time to be back to normal. He was so wrong.
Fast forward to today, he still tells me I say things I don’t remember saying. I don’t think I say things he said I say, so I feel so alone.
I understand but please know that you are not alone
Hi I don’t go around causing trouble but it always seems to know my name. Am the one they lie about pick on and think they can get away with minipulation this is a new trend their doing to me I’ve never experienced so much lies and aggression towards me and am the one with the brain Injury am ment to be in a place of safety but it’s far from that as am the new comer and these been here years their not seen in the light their shining at me I escaped being trafficked and my brain injury saved me so am told but now am in a different country away from my loved ones and in a place am blamed for others bull shit to me a honest straight no messing around person with a little a lot to the offer I live amoung dirty men who actually throw their food all over the surface that much food it’s impossible to just fall of their plate since October 7 20023 these muslim have gone worse and am a Jew they pretend they don’t understand when it suites them they understand as the words their using are violent and much more aggressive them me saying your a tramp your mother a tramp am having to depend my self with these violent men and I have frontal lobe brain injury I have a solution to my problem a lie dector test then a police statement then court for all who have harmed me