People just do not understand its so fustrating having to explain yourself over and over to people.
People just do not get it! Because I look fine people assume that's it, I'm absolutely fit, I hate to admit it but I'm not and I don't like having to keep telling people that! 😤😣😞
Hi Huwbo, Sorry mate but you will have to. Its difficult as having a brain injury is invisible to some so you need to adapt and train them. I had an incident last night where I was driving with a couple of friends and one I don't really like but he's ok in small doses but due to my temporal lobe injury I told him straight how I felt about him... Not a friend anymore but not to worry. He didn't really understand the injury or have any idea that it changes your personality. In my case when I'm really brain fatigued I say it like it is and don't care about the consequences, its part of the injury. I have to adapt and accept it. Shouldn't really be out late too as brain fatigue just makes me want to sleep. I was trying to explain the problems with brain fatigue to this chap but he wasn't interested. Im afraid some people are like that and it is frustrating.
yup its frustraing! hubby often have to explain! however we recently went camping with a new crowd of pagans and only knew three of them! we avoided discussing B.I all weekend it was great!
I get exactly the same really frustrated and can't or why I should justify myself especially to people at work as most of them know what happened ,too small minded some of them!!!
I had a friend come over to see me a few weeks back and hadn't seen them since before my ops but they knew the details, by the end of the week
when they were due to go home we fell out because I speak my mind and they got really upset because they had missed their flight which went the day before even though I had told them to check so in the end I said it was there fault anyway which basically hit the nail on the head.....
so a 30 year friendship has now finished but do you know what it didn't upset me so that speaks for itself and they have always been "touchy" anyway and my way of thinking is wrong attitude to take with me by just storming off even I wouldn't do that without at least trying to resolve it so end off!!!
It is deeply frustrating. My son has just collected his AS level results, and, before he went to pick them up, I'd said that if his marks came back lower than predicted, I'd write to the exam board, regarding the mitigating circumstances. He said he'd mentioned that to one of his tutors, who had said "Yeah, but your Mum's back at work now, she's FINE!"
I'm not fine, I just hate admitting it to people. The team that I work closest to 'know', but sometimes trying to get it across to other people is hard, because I look pretty much the same as I did before. I'm not the same.
It was heart breaking to lose the last link to my former life when I had a final and enormous falling out with the person that had stuck by me through thick and thin for the greater part of 35 years.
It was very difficult for me being forced to move following the loss of work and then our home,but in hindsight, it was probably one of the best things to ever happen to me. No one knew me pre BI. I no longer had to try to be the old me.
It's very hard when people judge you on the external facade. If I had a visable disability then people wouldn't question my validity. On the plus side because I don't have an external disability then I'm more socially acceptable to be around,pity I don't like being social then eh?!
I know what you mean, but how could they possibly get it? I can barely get my head around what's happened to me.
It sucks, but imagine people could tell you were sick, I feel blessed about the fact that I look physically fine.
This is where I am able to count my wonky walk a blessing I guess...the more fatigued I am the more 'robotic' I look (think wet pants....or worse). So people tend to get a physical signal too with me.
Not always though - I can find I am walking fine and so do exercise of some kind (by which I mean walk in town instead of taking my buggy) but then the impact goes to my brain and I start zoning out. Or the opposite happens and I go to a meeting, walk in looking perfectly normal, spend an hour discussing stuff, draining the brain, and then have to be helped out of my chair and walk out of the room looking again like I have wet myself....anyone who doesn't know me probably hinks that is a convenient put on but that is just how it goes.
To be honest, if people don't ask nicely, I don't explain anymore since it would be wasting my energy to do so. . If they do and are interested I think of it as an opportunity to educate.
Hi Huwbo,
And welcome, I know you are pretty new to this forum.
I think I know what you are talking about. I don't have the same problem in having to explain myself over and over some of my disability is pretty obvious.
But I do have a friend who has a BI to. He looks like he doesn't have a lot wrong with him but he does have cognitive problems, memory and such.
From what he says, his family are so not supportive of him and clearly do not understand his injury. He could be visiting his family and he would be in conversation and he might repeat himself and his family would be like "Here we go again" and "your repeating yourself again" and he would find it hurtful.
The thing that I think is to not be amongst people like that.
I used to spend years hanging around with one of my friends who does not understand my injury very well at all because the real problem lies with himself, he is self centered and mainly cares about himself. Most people will say the same.
Most of my operations took place in my teens while I was going theough senior/high school. My injury lowered my confidence and it only took my friend 19 years to realise I had low confidence back in school!
In a way, it's a mixed blessing. Most of the time, I'd prefer people to think I'm as fit as I look - I don't want them to see me as "ill" or needing sympathy (pity), so I only confide in close friends.
We are not alone either - many people with emotional or psychological illnesses seem perfectly fine, and don't tell others because of the stigma attached to them.
It's hard at first, but you get used to it and learn to adapt.
Hi Huwbo,
I have both physical, visible glitches and some cognitive, invisible ones. Both can have their pros and cons. Rather like Malalatete's wonderful descrption ( thanks, Mal, humour helps ! ), think pidgeon toes with a pole up the rear end, with a few Groucho Marx dips when very fatigued and the odd rather embarrassing Jennifer Rush type leg up flexor spasm ! ( Remember 'I'm your Lady' video ! ) This can look strange and offputting to others ( and who can blame them ! ), conversely it can afford me respect, as in less fearful/more understanding people will move to give me adequate space, hold doors open with a pleasant smile etc. With the memory and concentration issues, being as they are invisible until they become obvious in a social interaction setting, I often just find it easier to be up front if I am having difficulties and announce my shortcomings. I find people are quite accommodating on the whole.
Before all this malarky started, I had no clue about neuro damage either and probably had some badly stereotyped ideas about abnormal movement and mental capacity. I know a lot more about these things now as a result of my own experience, the experience of others on here ( thanks, everyone ) and internet research.
So I feel that I can hardly blame the average person who has had no encounters with neuro stuff if they find it difficult to understand or uncomfortable to be around.
For those who wish to know more, I am happy to explain my glitches and hopefully make them feel more at ease : )
May I ask how your symptoms affect you ? Angela x
In this way I feel lucky - When the situation calls for it I briefly tell people what's going on and let them make their own conclusions. Since I really don't have any control of how they are going to respond or not, I really don't care what they do with it or what they think. Normally the response I get is take your time, no rush, what can we do to help. I get better response from people I know the least. Those I know better seem to be less able to understand. Probably because they knew the way I used to be and still expect that is how I am.
I am certainly finding the friends I've had the ingest are mostly the least prepared to make anyoe acne for how I am now. They just shun me because I am less reliable, I am less able to support their issues, I am so often zoned out with fatigue and forget whe chunks if I formation they have told me. No explaination from me tones down the fact I look the same. I behave the same on the surface at least I am articulate - til fatigue kicks in and I go silent that is, and they insist I must be the same as before!! Other peoples fondly held expectations are making my life much harder than it needs to be and particularly because my grown up dins insist I am putting it on and feeling sorry for myself and that I should just work harder at doing normal things. So hard on me.
Vicky x
My grown up sons, not my grown up dins
It does become a bit of a pain. I also look fine apart from a limp but people are suprised when they find out I have had a bi.
Am I supposed to sit there just mumbling to myself? Or maybe I should act differently ? Maybe a tattoo on my forehead?
I have also been accused of acting "normal"......ok ok I may be guilty of trying ro fit in as much as possible.
I do this for MY benefit not THIERS. It gets Me through the day.
Although it is strange when some one as told me I look fine and cant see what is wrong with me. Then go on to complain that I have already told them something "only five minutes ago" ......yep people CAN be that insensitive at times.
Maybe we should all carry sirens and flashing lights. Until that time we may just have to educate the uneducated.
Pax
Yeh. Let's go for the sirens and glad hung lights! I like that idea Paxo! 😊
Flashing lights not glad hung lights! Where did that come from?? Lol
Glad hung lights??? Dont know what they are as well....but sound good
Hi! I'm James, I'm new around here.
I'm needing help, can't do this on my own...
Does head injury as a child change how you grow up?
CONCUSSION - HELP - ADVICE PLEASE
