I feel very isolated since my head injury nearly 30 years ago people just don’t understand they take everything for granted and say there’s nothing wrong with you it’s so frustrating I always feel belittled like I’m not worth the air I breath
isolation: I feel very isolated since my head injury... - Headway
isolation
36 Replies
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Hi, a brain injury is something I wouldn't wish on anyone, but sometimes I'd like it if the the non-brain-injured would use the imagination they still have, to at least try to think how difficult it is. Of course, they can't, how would they, I certainly didn't, couldn't. As a nurse I'd do my damnedest, but I didn't have a clue. I would sometimes wish I could get inside their heads, careful what you wish. I try to not draw attention to the BI, but in so many situations I find it easier to just hold my hands up. That is easier for me, but not necessarily easier for the other person. I don't expect special treatment, just a little understanding that my mind might not be as agile. I know that most people will discount me as a valid human being, but that is their problem, not mine. I am as valid as anyone, no better, or worse, equal. If someone chooses to belittle me, that is a reflection of their ego. My old drum teacher used to say, ' better to be loud and wrong, own it, be proud'. 🍀
in reply to Pairofboots
hi thanks for the the reply it’s hard to under stand people sometimes and I get confused makes me stand out like a sore thumb
Pairofboots in reply to
I used to think I could pass as "normal", amongst the crowd, but now I am just normal in a world of weird. Nice to meet another normal mlww.
Yes you can feel so different to other people and it's hard to make a connection, especially when your life is so different from there's.
hey I’m sorry people make you feel like this. I know the utter frustration of living with an ‘invisible’ illness and how others can never understand what it’s like. not only are we coping with the awful symptoms but also have to cope with all that misunderstanding and judgement from others (including doctors!) around us. It’s really demoralising.
Thoughts are with you my friend
It seems like a lot of us here feel the same way. I think I've finally just learned to stop caring especially since COVID I’ve noticed more people are way more distracted, stupid and/or messed up than me and they don’t have a brain injury to blame.
I think that when I have trouble understanding now I just say ‘sorry it’s too noisy’ instead of trying to explain the brain injury thing which never goes well.
Hi, like your comments. Yes people are very different since covid. It is as if they all have a brain injury and we are the smarter ones😀.
They sure are! I like your thinking!
Here people now drive like they are drunk, high (likely since every 3rd car has weed smoke clouds ☁️ coming out the window since they legalized it 😂) or distracted by a phone stuck up their butt since they need to see TikTok at a red light so urgently.
When COVID hit I was finally leaving my house after years of hell & going for short drive that seemed normal… now I wished I’d never seen what is going on now. I hate driving now more than after my accident. I never used a car horn more than 3 times in my entire life. Now I feel like I use it every time I drive so someone doesn’t hit me when they aren’t paying attention. I’m so scared of more brain damage.
I’ve read some medical research on autopsy results from people that have died from COVID and in one study the frontal lobes of the brains in those people had shrunk. 😱 if that is actually happening that would explain all the rage, the lack of decision making, all the mistakes (for years I thought it was me but it is the ‘normal’ people screwing up paperwork).
The weird thing is now I’m wondering when in the future they will tell us doctors finally figured out it’s a virus that affects the brain & CNS (it sure seems like it with the weird affects of long COVID and how people complain about the same things brain injured people say).
I mean I’m not sure how I coped with the pandemic pandemonium better than ‘regular’ people who were freaking out about staying home… BUT maybe after living through & with brain injury hell nothing in life is really worse. 🫠
Yes it's clear from the research coming out that Covid can have a neurological impact. A good friend described her post Covid brain fog to me, and I just said, 'welcome to my world' - she was really startled, which I thought was funny, because I'd known her for years pre MTBI. I've obviously never explained it very well! I think a lot of the neuropsychologist stuff I had early on, was about coping with uncertainty and how humans find it very difficult indeed - so yes, I did feel a bit ahead of the game - because the pandemic, and everything since, brought an immense amount of uncertainty to everyone.
Plus my fatigue eased off to almost zero during lockdown which was a bit of a lightbulb moment in terms of how to live without fatigue ( a lesson I've conveniently forgotten since...,)
(To me in social situations now I just try not to flag up the BI, I'm absolutely sure I'm still being slightly odd about some things like the word finding, and trouble following people's conversation, but I just ask people to repeat themselves if I lose track of what they're saying, and I ask them to wait while I make notes on my phone if it's something I have to remember. I find it a bit annoying that by the time I've met someone for the second time I've forgotten some key thing about their family or such like - so they tend to present as a bit of a blank canvas each time - I think the recall is there, but it's so often a bit delayed, I remember stuff about them after we've seen each other, which is weird, but I am making new friends now even so. )
I’d like to think you explained it clearly! 😜 Most people really are listening when someone speaks. My mom just had a stroke a few months back and now she understands what I meant and really didn’t think it was that bad until she is going through it herself.
Imagine if you WERE explaining it well but everyone else thinks you are exaggerating how bad things really are. I’m pretty sure your friend only understands what she is going through and then can kind of relate now (even if it isn’t the same). If I’ve learned one thing is that even the people you have left in your life after a brain injury will never really truly understand for god sakes most regular family doctors haven’t a clue so we cannot expect regular people to get it.
I use my phone too! I take photos, try to write notes… now I just use speak to text to try and get the right info. Often I try to add appointments in my calendar on the spot and always forget to tap save so then it’s lost. Even if I know I forget when in the moment I can’t actually do it which is mind boggling. 😅
I can never understand why family doctors apparently don't get it? They must hear the same symptoms and stories from all of us - but perhaps when we give up on expecting help, they assume we're ok? Or perhaps they're just focused on stuff they can fix? I sometimes wonder if it relates to when they trained, because although they obviously have to do CPD, if they trained pre 2014 when the research started to change because of fMRI I wonder if they were just told by a passing neurologist in college that it was all in the mind? Traditionally there used to be two distinct schools of thought in neurology on MTBI - one that it was physical and one that it was mental. I think the annoying stigma of malingering still hovers too.Ah must be tricky not saving stuff to your phone. Everything has to go in my phone diary, with loads of reminders, straightaway, or I'd never function.
in reply to Painting-girl
hi all what you have said is true we fight this alone as for reminders in my phone that’s a no go for me can’t work the thing take care
It is really hard. It keeps coming up, over and over, in different flavours.What I have found helps is to find those small things that spark happiness - a flower, the sky, the birds singing. Just sitting with those things can bring a sense of inner contentment.
Sure, part of the brain may have a lot if words that can get to you - you are not those words, or thoughts - you are so much more than that. As someone once said, you don't have to believe everything you think.
I sometimes just say I'm having a bad day cause ai got hit in the head... don't say when... of course I live in Canada, the land of hockey players...so they get such phrases as 'I had my bell rung too hard'. Maybe in the UK there is one used by rugby players?
Any day you are out there getting it done, you are being the hero of your life.
Cause yes, it takes the epic journey of a hero to get through this.
I have also learned to say things a bit differently when I need to... like have you ever had jet lag? Really bad jetlag? That's what I'm feeling right now..... rather than saying I'm tired.
Well, don't think too much about such adjustments right now - you'll find your way.
Other people can't get what they have never experienced. It comes down to that. Like I can't really get what life is like with 2.2 kids and life in the suburbs with 2 people working - I do not have a clue. Heck, I don't even remember what it is like to live in a household where something on the to do list might get done by someone other than me.
And yes, I still like flowers and my pet bird and listening to the birds sing etc etc.
And Gandalf fighting the Balroc hasn't got one over on me - I am just as bad a** as he is. Cause I've survived.
Leaf
I like your perspective! The weird thing I find is here in Canada only athletes or coaches dealing with players that go through any kind of brain injury really understand and then you don’t feel stupid when your brain gets stuck with words.
The best medical advice I got from an NHL player who told what treatments worked for players when they’d lost hope in recovery from brain injuries and a baseball coach who said you are not crazy that same symptom happens to lots of my players too (where my doctor had no clue) and he explained why it was happening for them and things I should try to help the symptoms.
I was also told stop apologizing for my speaking behaviour (as most people didn’t notice I’d said the wrong thing or was too slow). A normal brain filter mistakes people make when speaking or writing and I realize now all I see are typos (writing in books & magazines- where these writes should have spell check 😝) & all I hear seems wrong (incorrect words/language/grammar) so I am getting confused at someone else’s bad English or incorrect French because I can’t interpret it.
I never knew a good brain would ignore mistakes and interpret it all as if it was correct. It’s like that social media post that you often see online when you can read that jumbled word scramble even though everything is spelled wrong.
Now I just laugh at how ‘smart’ regular people really are with my neurologist. 😂
That's really interesting about the filtering behaviour of the neuronormal LostG. Plus the sports aspect makes sense, because my neurologist actually sent me to a sports physio for my concussion management, who calmed me down immensely - because he thought it was all a perfectly normal result of a head bang, and all his study and practice had come about because of wanting to help young athletes in some way after MTBI.
know that one very well! Others still expect the old u to be there, try headway for places to meet others or y local social services. Or chat to us here? Find this site very therapeutic. Good luck & SMILE to spite the frustration?!!
I smile broadly at everyone I meet socially, and ask with great warmth 'how are you?' and then knuckle down to just listen. I don't have to say much more than that. Makes me realise how alone many other people feel, even if they don't have a brain injury.
Yes, I know where you are coming from on this. I find communication difficult with my primary carer who will often respond, “It is all about you, isn’t it?!”! Well, yes, actually it is and the DWP are paying you an allowance to care for me. Thank goodness they don’t require timesheets!
I went to a memorial service, last Friday, made all the more awkward when son blabbed to my wife about my young girlfriend. If you reject your spouse, is it unnatural for him to seek someone else? We all get lonely and I think the ABI makes it even worse.
am sure u have it within u to build/ adapt, fond something that u enjoy? Weird minds take fun from strange things? U have another shot at u life?! Don’t seek y never find!?! Take care. Oh and smile to spite y brain injury? They won’t know what’s caused it!!
Good morning mlww
Simple answer, ignore and do not give a f***
Look after yourself and those around you who do care - over 25 years I have not found very many who care or understand, even Headway people.
I like the people here a lot even though we're never likely to meet. I know you are all real because so many of the things you say are so relatable.
Just keep going, keep at all those people who are supposed to be there to help. I no longer care whether the professionals like me, I want them to do what they are paid to do and help .... am beginning to get quite assertive about it in my old age, despite FEAR.
Best wishes
Michael
Cheers to this! 🙌🏻
With age comes this wisdom…
I often wish I go back and tell this to my 13 year old self.
Hi, wow, 30 years that is a long time! I feel isolated after just 2 months stuck in the house. As everybody on here is saying beat it and challenge it as everything I read on the Internet and headway say that your brain needs rewiring. Maybe I am extremely optimistic and determined because this is new to new as only 2 years and very mild, but I still have extremely off days with the pain that I want to end it. So belive everybody is here and try to get some local help as we don't know where you are from and you are on headway. Try listening to music and birds and I know what you mean that after years of listening to music and birds you want to talk somebody and do things or a change of scenery. Try to do some simple things you like. Summer is nearly here and I suggest if you can get to a beach and watch the waves or paddle in it etc Try to enjoy the simple pleasures. If you are in the UK what about enable to get interaction and activities?
I know it us not the same typing a message and we all require interaction as it is part of human nature.
My tips are to determine the medical world like everything else you can beat it by helping with brain food and exercise and determination. Very slowly it is working and hard work.
SMILE! 😀😀
Good perspective!
Doing things that bring joy (no matter how fleetingly it seems) help get through this. I like the sounds of the ocean and rolling waves. I only wished I lived next to a beach but for now my google home plays the sounds.
All I’ve learned in 6 years is never trust any medical professional that says you’ve reached MMR (maximum medical recovery). It’s bullshit for the healthcare system doesn’t have enough funding so figure it out yourself. We have be our own healers and thank good for internet or I’d be dead. This group is the best I’ve seen online… still not plagued by scammers or bots! 🤖
I’m so angry at the scam that is insurance that refused to pay for my treatment until I fought them (when I could not even write) then fought me more to not believe I was injured for years… then when they accept I’m injured and start to pay for treatment after years of fighting their excuse now is that after 2 years I’m at MMR. Meaning no hope for recovery so now they don’t have to pay. Where I am I can even get any money for treatment in a lawsuit. The idiot lawyer I hired said treatment has to ‘reasonable & necessary’ so we cannot ask for money for treatment. I was like what?! After 7 years of hell where my insurance won’t help you mean im suing for zero reason? Why would I sue the other driver if I can’t get any money for treatment. Sorry off track but that’s my brain now… 🫠
The system tries to break the broken so we have to find our joy and healing without it. I’m reading a lot on healing the brain (after strokes etc.) and trying different supplements so hopefully I’ll have something to report back on that helps symptoms soon!
it’s gone up a year, was told after my accident 5 years of recovery. What u left with thereafter is it?!! Well took part in a reasearch study in 2010 on brain injury spent a week at Hammersmith hospital watching a video & then had to write what I had just watched. Relearnt how to train my brain to recollect, something I hadn’t done since 1998! The brain is an amazing micro processor! No one knows what the brain is capable of unless they’ve survived one!! sMILE!!
I’m always excited to hear people say they made progress even after they were told that’s it. As a programmer I just think of it as re-programming my mind! 😂
If only we can get a brain upgrade chip somewhere… maybe one day.
used to tell my students the heart is the master switch, the brain the micro- processes so protect it!! Ignored my own instruction!!
in reply to LostGenius
yea if it’s ever possible let me know 🤣
Oh dear, sounds awful. Yes reading and fixing ourselves is the best. Know what you mean about insurance, I have health insurance and asked fir help and then they have gave me false numbers for a month now .
Sorry to rub beach in, I hope you can get somebody to take you near one? As I say keep talking on here as you certainly sound like you know all this stuff and just need interaction to laugh 😃 😀 that is very good for the brain!
Xx take care
We seem to have a common cause and I agree with most of the comments made here.
No one else knows or cares and even the ABI bill promoted by Headway will not make stupid “normal” people understand in most cases.
I rarely mention my TBI although a few weeks ago I was in a cafe and the person sitting next to me (who I vaguely knew) started a conversation about hidden disabilities. I eventually succombed to showing my Headway card and she was shocked that I had suffered a TBI, but instantly fully understood my issues more than anyone I have ever met (except my neuro).
She then said get hold of a copy of a book by the brain surgeon Henry Marsh.
I did and read it, and next time I saw her asked if it was because it had been in the best seller lists for books?
”Oh no, its because I used to work with and knew Henry Marsh and could tell you more than is in his books before he retired in 2015”.
No wonder she understood. I was so grateful and repeatedly thanked her. 😀 I think we will remain firm friends for the future.
If only the rest of the world was in that knowledge category.
Oh that sounds a wonderful friend😊 glad you can get out and about and meet good people.
That's a great story Shreds. I know I bonded briefly with a delivery driver who told me he'd had a stroke (probably at the oversharing stage) and I explained about my TBI and wrote down Headways details for him. You see the look of relief in someone's eyes when they realise someone else 'gets it'.
they don’t know, until they experience/ the fun of a TBI, keep safe
I had my Brain Injury forty four years ago.I knew something was wrong, but I didn't say anything.
Then I had a massive breakdown. I seen a Psychologist and did some tests. A few weeks later I was told I had Head Injury. Explained to me the complications of this. Then things started to fall into place.
But the main point is I know what is causing these problems. I explain to a few folks why I'm like this... There's nothing wrong with you your just as thick as Pig Sh*t.
I am bullied, ridiculed by the neighbours.
If I answer them back. They get straight onto the Housing Association. Ultimately I am at blame.
I am proud to say although I am classed as Disabled, i look perfectly fine, fifty five years young, ageing but not bad body.
I have to fight tooth and nail for bus pass. ESA, PIP (Going to Tribunal)
Some days I feel dead beat, I feel like sh1te.
Other days I feel relatively healthy.
Memory is the main problem.
(Apologies for going on too much)
I totally understand how you feel.
There are some brilliant folks on here can advise also
in reply to oldngrumpy
hey thanks for the reply it means a lot hope to keep chatting
very much akin!! SMILE always pacifies me
I hear you🌻 I get you. 💛
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