Things you shouldn't say to people with a brain injury - can you help?

Hello all,

We'd like to put together an article on the things you shouldn't say to people with a brain injury, and we need your help!

We know that in daily life our members often face frustrating questions and comments about their condition from well-meaning friends, relatives and strangers - things like "you should be better by now" and "I know how you feel, I forget things all the time too".

Can you tell us some of the difficult and frustrating comments you've faced? We'll use a selection to put together our article, which will hopefully help to reduce the issue.

Thanks as always for your help.

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46 Replies

  • 'You look well, in fact you look very very well' is said to me! Me and my internal voice exasperated and struggling not to impulsively and angrily retaliate 'but my brain injury doesn't make me look physically ill it's a invisable disability that you will only 'see' if you spend time with me and experience how difficult my activities of daily living are!!. Have also frequently had 'I forget things as well', ' it's all part of getting older', 'well you look alright', I have balance problems too (from an elderly neighbour), and also from the elderly neighbour when I said I couldn't afford to employ a cleaner or a gardener but I was not managing either 'we are all having to manage on a pension!' Especially the neighbour speaks to me as if I am the same generation as her but I am 30 yrs younger, not a pensioner, and I am sure she doesn't say these things to her daughter and son who are of a similar age to me. Some of the hardest comments I am told are about my parenting of my son (now age 10yrs who I adopted as a single parent 18months before I was seriously and life threateningly ill and in a coma when he was 5 yrs old) and the difficulties my frontal lobe bi causes. I know my dysexecutive and mood problems make my parenting very tricky but expressively saying that I should be able to overcome my bi difficulties so my parenting is reasoned and perfect is not helpful but piles on the guilt on top of the guilt I already have for the trauma my son went through when I contracted BM & S etc. Practical help is non existent (no family and close friends vanished) but criticism is abundant! I an acutely aware of how my parenting ability has considerably deteriorated post bi from pre bi when I was very able!

  • SC just catching up on some previously unseen/older posts, and saw yours. Gee whiz, its like someone says "right lets make this REALLY difficult" and then later turns the screw even tighter. Sorry to hear uv had it so hard, hugs seem to go a long way on this site, so here ya go, have a big hug. Feel strangely at home here.

  • Hi trishy. thanks so much for the big hug which I have wrapped around myself. we just have to get on each day as best we can ....... but there are times when it does all get to me! Having my son is fuels my determination to keep going as don't want his life restricted by me. x

  • I think my least favourite one is "Oh, are you better now, though?" when I have to disclose to yet another person that I have had two rounds of brain surgery- it's really hard for people who haven't experienced it to understand that it's not something you just spontaneously 'get better' from, it's a long line of adaptations, and working-around.

    It's a tricky one to answer, because we all adapt at different rates, and I have always been fiercely independent, so people saying "Oooh, should you be doing that?" REALLY pushes my buttons. I double-process everything I do, to make sure I'm not about to have a toddler-moment, if I'm going to do something, I've already risk-assessed it, it's not up to other people to decide what they think my limitations are.

    When I first returned to work after the emergency surgery, I had a lot of "Do you think you should go home?" if I had a headache, or really bad vertigo, it was really hard for other people to accept my reasoning that I knew my body, and knew what would pass better than they did. I was still in the 'irritable' stage, and it was hard not to shout "No, because if I go home, there's nobody there if I DO have a seizure or something, there are first-aiders here who know me!"

    The other big one was "Doesn't it make you feel grateful for what you have?" or "You were so lucky!"- I get that I had a significant, life-threatening medical event, and I look relatively unscathed, but the constant platitudes and drivel from people who don't have to constantly evaluate every neuro-weird symptom they get can be a little trying. (There were three aneurysms, the first ruptured, the second was coiled a year later, and the third is inoperable, so it's just sitting in there, lurking.)

  • "constant drivel and platitudes" .... Here Here, I second that😍. I find you often say exactly what im thinking. The sooner someone invents a magnetic strip that we can wear on our foreheads with an indicator reading what percentage of tolerance we have in store .... the better

  • I LOVE that Idea! I've only just realised how much sway my menstrual cycle has on my mood/tolerance, and put one of those 'tracker' things on my phone, so I don't panic that I'm about to commit atrocities on 'week 3'.

    At work, we sometimes give less-communicative students 'cards' that they can show staff "I don't feel able to talk right now, I will come back when I am calm." "I need help, please send for Mr ..." "I am fine, I just need space", that sort of thing, because SOME adults will just continue to press and pester, a bit like they do with 'us'!

  • My husband appears absolutely 'normal' to those who don't know him. If one more person says 'oh, I forget/mislay/misinterpret things, it's just age' I think I might scream. They don't see him on a bad day when he forgets how to make a cup of tea. Also jokes along the lines of 'your memory is bad? oh, did you remember I lent you some money?' are not helpful.

  • 'You are so lucky that you survived and you should be grateful that you are so well'

  • Ah that old chestnut "so lucky you survived". Terrified for when my 'luck' turns bad 😒 now, god knows what we are in for then!

  • What most people underestimate is the sheer volume of issues we face on a daily basis. So comments like 'Oh we all get dizzy at times' : 'We all get headaches' : 'We all forget stuff' : 'We all get tired' : 'We all get angry' : 'Oh I don't like noise, crowds, bright lights ' etc., etc..

    But after brain injury, each day is a conglomeration of all these problems every day of our lives.

    No one's fault really. Just a lack of awareness which I also suffered from 'til I learned about brain injury................. through necessity.

    Cat x

  • hi cat ,you are right in the past month I have heard all these the other one I seem to get is why is he having problems with stairs he is walking isn't he ? I say yes but for some reason his mind wont let him do them ,he also tells me that the floor seems wobbly ? but I must say it does get to me when they go on about how he carnt do stairs like you say unless they have had a brain injury they don't really know

  • I used to have that sensation that the floor was moving so it felt unsafe and unbalanced me as if I was walking on squidgy jelly. Reflective glass like flooring was also a problem and I couldn't move at all to walk!

  • Hello its Jules here.

    Please never tell me: 'the job you HAD was brilliant'

    Please never ask me: 'What are your plans today'


    'What have you been up to recently'

    or (if you dont know me)

    'How are you'

    answering 'how are you is the hardest question in the world to me and the one i fear most, especially from strangers/professionals/doctors.

    Hope it helps

    Kind regards



  • I get the feeling that awareness of "hidden disabilities" is roughly where awareness of disability was about 40to50 ago.

    I really hope that change is coming and that any young person will benefit from greater acceptance of their abilities and not constantly be reminded of their lack of speed.

    I can't speak for anyone else but I have mood swings and yes everyone does have different hours or days. My mood swings take the form of being able to explain that I look well because I am sticking to the plan or feeling guilty when someone says is that all you've done? The other manifestation of the mood swing is the urge to retaliate.

    I think the worst thing for me is the patronising tone that some people use when saying things like 'youre doing really well".

    It is so difficult for all concerned as there are no standards and each brain injury affects each person differently. Even within the medical professions information seems patchy at best.

    Time is a great healer and most of the time I accept that I have limitations .

    One thing that really winds me up is people expecting me to just do something else when I've finished the task at hand. I Can't . I need to rest.

    And the classic "I get headaches/migraines too!" For the most part it seems that our "headaches" are not something we can take a paracetamol for they are caused by our brains screaming enough now.

    That's it for now. There is probably more but getting tired.

    Hope everyone is having the best day possible.

  • Yes I agree it's the tone that accompanies the crass words and your word 'patronizing' is frequently how it's said screaming from them 'don't believe you fraudster'!

  • "There's nothing wrong with you"

    Unless you're in my head, you don't get to tell me about my own experiences. Idiots.

  • i recently had an appointment with a consultant neurologist who decided to see someone who was there 5 minututes before my appointment and couldnt understand my behaviour when i eventually got into see him.

    it goes like this if have an appointment but my wife explains to me the othe one is over running im ok, but this wasnt the case with this one.

  • oh yeh people who say they understand......they havent got a clue .........the only way to understand is to be in the same boat......but i think i speak for the forumn when i say we wouldnt wish it on any one.

    my gp is brilliant i know if book an appointment my wife and i have the last 2 of the day, he will sit and listen tell me what hess able to do and give me the choice of either saying yes or going away and thinking about it, a complaint a lot have had.

  • 'It's all in your head' ! Medical people, you know who you are and DO know better than to be using this as an economic convenience !

    General public, you are forgiven for your varied misunderstandings : )

    I have rhino hide tolerance these days, luckily ! : ) Angela x

  • It's all a bit 'a mile in our shoes', I suppose. We're all different, and we all have different experiences of adapting to life post-BI. I think that the most unintentionally offensive thing 'people' do is make their own assumptions of what we can/can't do. The things that we have to do that are additional-to-or-different-from the majority of the population are massive, life-altering adaptations, in an attempt just to appear 'normal'. Some days, staying awake is enough to tire us, because we're already having to do a million and one things differently.

    I appreciate that I can be an utter nightmare, my son has to tell me off for getting angry at cat-litter being on offer when I'm doing the online grocery shopping. (We don't have a cat, but I still get irrationally angry that people who do have cats are saving money, and I'm not. Yes, I know I'm saving money because I don't have a cat, but these are the kind of utterly skewed-pointless arguments I have with myself EVERY DAY.) The HR bloke at work was supremely unhelpful when I asked him to clarify the process on retiring on medical grounds, if the second surgery didn't go according to plan. "You mustn't think like that!" was incredibly offensive to me, because I was trying to work-around the fact that I was scheduled for brain surgery, which had the potential to go all-kinds-of-wrong. (It didn't, I was back at work just over a week later, didn't take any time 'off' because I'd had the surgery scheduled outside term-time.)

  • Here is a list of some of the no-nos for me:

    You're looking great

    Are you better now?

    Everyone forgets things

    I feel like that all the time (no you don't)

    You're bound to be tired (I'm not tired, I have fatigue - it'sNOT tiredness)

    Why are you wearing headphones?

    Why are you wearing earplugs?

    Why are you not back at work (Wehn you look so healthy)

    Will you ever xxxxxx again? (Multiple situations)

    You should do well out of this.......(.financial compensation assumption)...argh!!!!!!!!!!

    I could do with a year off (I still haven't retuned to work)

    Just enjoy the rest (time off work - I sincerely wish I could rest or enjoy it)

    What have you been doing with yourself? (Nothing in fact for a whole year)


    My big one is this:

    I still have emotional labile issues. Mostly it's the uncontrolled outburst of crying which stops as quickly as it started, but occasionally is the opposite - uncontrollably laughing. This is not funny. I'm now starting to recognise the signs of it. Sometimes it happens in the middle of a big cry, because I've started realising how ridiculous it all is, and it switches to laughter in the middle of the crying - briefly - then switches back to the crying. (Or vice verse). If it's just the laughter, I start by feeling a crinkly feeling down the middle of my forehead before being unable to stop laughing. Sometimes it's when I'm on my own and something appeals to my sense of humour, sometimes it's just a word which seems to sound amusing, well it can be a million things that set it off. Sometimes how something appears to look unusual sets it off - things which aren't straight, things which look like something else and then I suddenly realise what they are - it's not easy to predict. So my biggest no no which makes me see red is:

    It's good to laugh - we all need a good laugh from time to time.

    I don't need a good laugh (well I probably do) but not in Sainsburys or the Library, not in the middle of town when I'm on my own, not anywhere - not like this, it's not a good laugh.

  • Hi,

    I would say the "We all get like that" following a yawn or even if we forget something but you have already covered something similar in the post.

    But what I would add is what one of my friends once said. I used to play a little football with him. I would be happy more by having a kick around with the dootball but he would expect to play a proper football match. Obviously I couldn't play a whole match and I couldn't do certain things while playing but one time it really annoyed me when he said he knew someone who had a brain tumour in the same location as mine and surgeons managed to get it out and he can play football just fine.

    That annoyed me cos yes, we may have both had brain tumours and yes, they might have been in the same location but the thing is, we likely didn't have the same surgeons as my surgeon apparently had massive hands and his massive hands bruised nerves in my head. Also the fact that my tumour calcified as well after the surgeon could only remove SOME of the tumour.

    So, we went through very similar things but ended up having very different outcomes, this is what he doesn't understand.

    Then again, he is a self centered person really and doesn't always listen.

    If some people weren't so egotisticle then they might understand more.

  • because it's invisable. people will genrally not see the damage so say.

    "you look good"

    plus because a number of the symptons are a magnification of what most people get, peole will say "I get that"

    I'm high functioning but once tired I struggle to think, its behond just a day of not sleeping well or simular.

  • Another article I'd like to see is: "Things you can say to people with a brain injury, that will help them feel better."

  • I'd like to see 'things you would like to say to the stupid people who say stupid things to people with BI' but that is because I am grumpy (have relapsed, legs and brain gone awol again this morning after 5 lovely months of remission - grrrrrr. Let's hope it is just a blip!)

    But on topic...

    I get driven mad by people who give me newspaper cuttings of how X drank nothing but aloe vera juice for three months and was cured from anything vaguely neurological, usually with the suggestion that I should 'give it a might help'. No it won't. If it would, my GP would have sent me away with a prescription for it years ago to save me turning up at the surgery again and again and again...

    Or those who think I am interested in hearing how their friend Y went to see Dr Z in Harley Street who gave them hypno-electro-mindful-stimulation therapy at £150 a half-hour session and how they are now running about like headless chickens with their own multi-million pound business (often selling the same twaddle to other equally gullible mid-life crisis sufferers). Again - if there was some obvious magical cure out there for what we have to deal with, we, the ones with the dodgy brains, we'd have told each other about it. I spend plenty of time keeping abreast of the most up to date thinking on how to keep myself as healthy as possible, thank you. When you feel like cr@p for a good deal of the time it is a good way to pass the time productively and helps you to stay sane and positive.

    I know people mean well but a key thing to living with BI and neurological issues is acceptance and moving on. That isn't helped by having people so desperate to have you comply with their particular version of 'normal'. My normal is what my normal is. That is just the way it is. I get on with life because I have taken that on board, and those I meet really have to take my damaged brain on board too.

  • I'm in a fairly constant state of grumpy, and tend to write down what I WANT to say, and then destroy it... the back page of my desk notepad is full of things I know I shouldn't say out-loud. Mainly "I have brain damage, what's YOUR excuse?" type of thing... (I have a medical condition, I'm allergic to morons, I have a brain injury, I'm not a simpleton, your dress is making my eyes want to vomit, where's the 'mute' button on you?- that sort of thing)

  • Hi Malalatete,

    This so made me chuckle this morning I really laughed out loud with your friend Y and Dr Z in Harley Street synopsis. Just what my parents want me to do. Yes then we all will be cured won't we.

    Nick xx

  • Ive been judged for not being able to walk properly and got called drunk off parents when ive never touched a drop of alcohol in my life

    My mum of all people who already had a child that has suffered a brain injury finds it fun to say to me it was only a slight knock to the head even though the drs didnt think id survive the night, its one of the reasons why i need to move out of my mums house

  • My mum tells me to stop being so angry i have so much more going on in my life than you do in your life, this is from a person who says she has a heart condition but hasnt had any medication since last year, im brain injury survivor, have exercise induced asthma and a heart condition but yep my problems are nothing compared to my mums problems :(

  • I think it was in reply to Nick but someone gave me great advice.

    People like your mum can bring out the worst in us

    "you wouldn't let someone like that rent a room in your house . Soooo why are you letting them live rent free in your head?"

    you want to be well and your mum wants everyone to feel sorry for her.

    Love n hugs


  • I suppose that living on a remote hill farm and only going out to the hospital means that I actually meet very few folk! Also I am on happy pills which - on the optimum dose - are an effective emotional cushion. I recognise this type of comment from strangers but it has never bothered me because those that say I am looking well are trying to be kind and those that are ignorant or thoughtless are, well, like that in all aspects of their lives. Also I am usually with my husband or one of the four young people and our eyes can meet briefly... Having said that about strangers/acquaintances though it is very different when it is a close relative...

  • Some of the comments I've received are: you look great...there's nothing wrong with you. When are you going back to the gym? I get headaches too but don't take weeks off.

    Also being referred to as" Suzie Summeroff" is particularly offensive. Insinuating I'm faking this to get summer off work.

    It's challenging enough staying positive without comments like these from so called friends and colleagues.

    Best of luck with your article

  • You're ALWAYS tired...

  • I almost forgot the prize one ; 'It must be soooo nice just pottering around all day............I'm jealous.' :x

  • Ouch! I've heard that one too :) whatever are they thinking? x

  • When are you going back to work!? You'll be glad you're back to normal now! Oh I know, I get bad headaches too! It's old age I bet! Live for today cos with what you've been through, you just never know! You were fine yesterday! But you managed that the other day! You seem to get tired doing nothing! So what will you do if that tumour turns cancerous!?!? It must be great to pick and choose what you do! Are you conscious of the fact that most people think there's nothing wrong with you! Oh it's such a shame, you were so good at your job too!

  • Ha ha ha just reading through these replies is just humorous for me as they are all so so true.

    Just lately I have been trying to educate my parents about this injury and I'm struggling as others here know. There are so many things you should not say to a person with a brain injury so so many but trouble is its invisible and people with out the injury just won't understand. My pet peeve really is from my parents who truly believe you can put a plaster on it and it will all be fixed. My mum asked me on Friday when we were talking about brain injury with her and again trying to educate her these were her words:

    "So when will we have the old version of Nick back?

    "Will he come back or are you going to be like you are now for the rest of your life?"

    "I think you should go and see Dads colleague in Harley street and get yourself sorted out."

    There are other questions but I now have to let them (my parents) process this for them selves. No more educating them.

    My sisters the same too, plaster over it and it will all be better... Arrrrrrghhhhhhh.

    Fantastic Question Headway. Nick

  • "Do you think you might be depressed?"

    Depression and anxiety are constantly in the news. Celebrity sufferers, awareness campaigns, information at the touch of a button. They're obvious and out there in our culture. It's infuriating to be given basic knowledge as if it's original.

    "Mindfulness will help!"

    Mindfulness doesn't cure symptoms. It alleviates them for some people, but doesn't work for everyone. It's not always a matter of "finding the right practitioner". The real irony is that the mindfulness-for-everyone people are trying to push everyone into a box while claiming that they hate boxes.

  • Er mindfulness is actually practical technique for disconnecting from a stressful situation to protect oneself from the type of emotional fallout described so well above. eg if someone has said something crass focus on their clothes and assess their dress sense... The idea is that one can be in control of one's thoughts not merely the passive recipient of others. Try it as it works! (It also brings a smile to one's lips depending on what one chooses to focus on...) It is NOT the answer to everything merely a method of taking back the situation.

  • I didn't say it never worked, I said it was not the cure-all. It works on a psychological/emotional level, so if your symptoms have that component it will help you. I'm honestly glad it helped you.

    My own symptoms don't have those factors. There's no emotional component, but I still field a lot of "Why not try mindfulness..." questions. That's why the idea infuriates me now. I'm sure it's a good technique for some, but it's being blanket-targeted at everyone. And whenever I explain why it won't work on me, I get "Why are you so emotionally resistant..." type answers. Bleh.


  • Sorry to hear that - it must be frustrating!

  • Oh gosh, there are so many - mostly already mentioned but my pet hates were/are ...

    " Aren't you fully recovered now? It's been nearly 2 years now (tut) " ( yes, MUCH better but recovery is not an option when you are still living with a blood clot on the brain)

    " Wouldn't know there was anything wrong - you look really well " - my reply is probably unwelcome - especially my early recovery replies - " better than feeling AND looking like S**T I suppose

    " you're really lucky" - am I ??? for having a very rare, life changing illness that lingers ? and losing a partner of 18 years because of it ?? As well as my savings to look after myself.

    " wish I could work part time" - let's swap places say I .... funny, they are not too keen on that suggestion

    " can't they operate ?? Surely they can" - nope - not a chance - not everything is fixable

    I could go on ..... but getting tired now....

  • As previous posts have mentioned, it's horrible to be asked "what have you been upto?". I already feel inadequate & guilty about how my life is, I don't need it highlighting. The sad thing is the people asking know it's unlikely I'll have been up to anything as I can rarely leave the house.

    Being told I look well makes me want to scream & often triggers feelings of rage, which always start with me feeling my blood warm up throughout my body. I'm sure bi anxiety / panic / anger will cause me heart problems at some point.

    I've found the best way to describe my situation in a way others understand is simply to say "my operating system is damaged or has a virus".


  • I can only reiterate many of the comments already said - but for me it's the "I'm going to ??? In 20-30 mins.. Do you want..........." ..and an immediate answer is expected - sorry but I have to think about the question, what it involves, given the time schedule, to process my answer. The question often comes via a telephone call I'm not expecting from a friend who decides she's going somewhere and decides to ask me if 'I want to" - I have to think if what she's doing is what I want to do, if I'm even properly dressed and respect table enough to go out. So basically questions that pre BI wouldn't have been a problem, are now.

    Also - "it's your age" re poor memory

    Yes the greeting, hello, you look "well" as in - you look "normal" so I'll treat you as such!

    "You can walk and talk, so where's the problem?" as said to me by Dr who didn't understand Brain In jury but said knew what a 'haemorrhage" is! Decided I was depressed and put me on Antidepressants, which made neural effects worse!

    As Cat said - no 2 days are always the same as to how we feel or act on waking!

    So I can only suggest for your fact sheet - that same as for the BI person, each day is a different day and should be taken with patience, calmness and understanding - even when you don't or can't understat at that moment in time.

  • The spontaneous "Shall we go..." I've tried explaining to people that having a brain injury is a bit like having a new baby. You can't 'just' get up and go, you have to make sure everything is sorted, I don't have to pack snacks, or a nappy-bag or whatever, but I can't just decide to head off into town shopping (shudders), or go out on a whim. I need to know exactly where I'm going, allow extra time in case I freeze/panic, and make sure I have a safe-exit route if I start to fog-out.

  • My TBI was the result of a fatal car crash. I find it distressing when people refer to my 'accident'. My tolerance levels now very low. An 'accident' is when you spill a cup of tea, not when you spill one persons life, and another persons brain into the road. Language is Very powerful, and does survivors a real disservice when devastating effects are given the status of spilled tea.

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