How to help others understand?

Hi my brain injury happened in May and I continue every day to suffer with numerous issues related to it which I'm sure many of you can relate to.

My reason for writing is my family don't seem to understand. I recently had a CT scan to check my injuries and the doctor told me I still have a fracture on my skull and bleed on the brain but it's not getting worse so it is getting better they said. I told family members and was told I was a liar because it was 3 months ago and it's impossible that I still have a skull fracture. I have bad mood swings which I do not mean and my family are getting frustrated with me and I have been left to look after myself since the day I come out of hospital with help from a friend only and no family.

Does anybody have any advice on how to try and get people to understand an injury they can't see and to realise that affects are long term not just short term?

Thanks x

21 Replies

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  • From my experience most people seem to think that because you look OK you can't have any problems

    Headway have a lot of info you can download and print out you could perhaps leave the print outs around for your family to read

  • Hi Chloe

    First of all welcome to the forum. We are a friendly bunch.

    Download the Headway leaflets. Ring the Headway helpline they are lovely people.

    I was lucky because when I tried to go back to work the occupational health people kept telling me that it wasn't like a broken leg or broken arm .

    It takes time.

    Top tips for managing your difficulties are.....

    Pacing........do a bit and rest and repeat.

    Take extra cod liver oil

    Make sure you stay properly hydrated and.......

    Avoid caffeine.

    Again welcome and hope this helps.

    Forgot to say give the leaflets to your family to read and if there is a headway group near you get some of them to go with you.

    Love n hugs

    Xoxo

  • hi chloe, that is such a difficuly aspect of it, I put this site together, mainly to help others with a BI but also to help other people understand, you might find it interesting - braininjuryftp.com

    all the best, it really can be a lonely road but does get better!

  • Hi Chloe,

    As a family member of a brain injured person I know how hard it is to understand how long the symptoms go on for. When someone looks well, you assume they have recovered. What goes on inside someone's head is a whole new ballgame. As others have said, try to get them to read about head injury to try to help them understand. They could also ring Headway to talk about it if you can get them to do so. They might then begin to understand the whole issue of bi and its long term effects.

    Good luck to you, hang in there things will improve, it just takes time.

  • Hello Chloe, and welcome.

    As others have pointed out, Headway have masses of ready-to-go resources, and also brilliantly helpful staff on the phone-lines, there might even be a local group you can attend if face-to-face is your thing. (It's not mine.)

    It's the 'invisible' injury/illness that people struggle to understand, and it's incredibly difficult to articulate to them that you don't just 'get better' after a brain injury, it's a long process, because the brain is such a complicated bit of kit, and the organic tissues are massively more intricate than a broken arm, or a removed appendix. Nobody really questions why someone might have a limp after a bad car accident or similar, but, with our Brain Injuries, we're expected to be 'back to normal', and that's just not how it works.

    I've seen a two-year approximate time-line quoted as optimal recovery, but we're all so vastly different that 'recovery' is something different for each of us. My Haemorrhage, as a result of a ruptured aneurysm, was roughly 18 months ago, and I'm still finding 'new' limitations, and changes, and trying to adapt to them the best I can.

    The anger. I remember being FURIOUS about everything in the early days, seriously, I contemplated throwing colleagues out of the window for slurping their tea, and nigh-on snapping the (ex) husband's head off if I came home from work to find him sprawled on the sofa, with dirty dishes left in the sink. I'd like to say it goes away, but, in my personal experience, I've just had to learn to deal with it. Looking at it rationally, my brain had been damaged, and my neural pathways were trying to re-establish themselves, while I was trying to carry on 'as normal'. That 'repair work' in the brain made EVERYTHING a bit like trying to cook a meal while the builders were still fitting the kitchen, everything was twice as hard as it used to be, and that frustration, and the fatigue at having to go 'the long way round' everything just kept feeding the anger. It's still there, but I haven't told anyone important to F-off yet, not out-loud, anyway.

    Expecting a brain injury to 'get better' straight away is a bit like thinking you can 'fix' a NASA space-craft by thumping it on the side, like an old washing machine, brains are significantly more complicated than any other body part, so the 'healing' is slower.

  • gaia i did my neurologist, an annoying little man, kept me waiting 35mins . went to the loo got back to the waiting room 5 mins before my appointment, he saw the appointment before me

  • I 'get it', Steve, pretty much everything presses my buttons, and I have to be REALLY cagey-careful about my first response, which is almost always something completely horrible, and socially unacceptable.

    I'm 'lucky' in that my work has involved a lot of behaviour-recognition-and-modification with adolescents, and, when my brain isn't behaving like an over-tired toddler throwing a tantrum in a supermarket, it behaves a bit like a teenager. (Eating straight out of the fridge, wanting to stay in bed, not wanting to tidy my room etc...)

    At home, if something is getting on my top-lumps, I either leave the room, or say something, it's much easier now that it's just my son and I, the husband was used to having his own way, and didn't see why he had to work around, or with anyone else. He couldn't grasp that coming into whatever room I was in, and turning on the lights, or the TV, or coming and sitting pretty much on me, and asking if I wanted to go to the shops, or a gig, or for a walk with the dog didn't fit my new 'normal'. It was kinder to everyone to 'let him go', because I don't think the soil in the garden is deep enough to bury him under.

    At work, the back page of my note-pad is my 'vent' for the things I know I shouldn't say out-loud, and I have a 'locked' Twitter, where I'll rant, in code, about how unreasonable other people are being, then look back, and sigh at myself, because 'other' people aren't as hyper-sensitive to stimulus as I am, things that send me into a rage don't bother them. (I also occasionally go and hide in the stock-cupboard, and send a coded message to a couple of colleagues I trust, and they come and 'rescue' me.)

    Out-and-about is difficult, those people that walk around zig-zag, as if they're trying to escape a really slow crocodile? I want to trip them up. People who suddenly stop dead in front of you for no discernible reason? I want to put them head-first in the nearest bin. People with clipboards? The boy and I actually dived into an alley, until the clip-board spider had caught a passer-by, and then scuttled off once she was occupied. 'Chatty' shop assistants, and random strangers who want to strike up a conversation on buses? My brain is over-stimulated, and over-occupied with NOT just screaming at them.

    I get angry at everything, the boy knows it's an on-going 'glitch' in my operating system, and we just have to 'go around' it, because he's had to adapt to the new me, as well. There's a running 'in' joke between us, which probably isn't funny to anyone else, about the time I blurted "I've made myself a cup of Chamomile Tea, but it's not working, and I'm still f***ing FURIOUS!", he'll catch me starting to get angry about something (The last one was nappies being on offer, when I was doing the online grocery shopping, and I became suddenly FURIOUS about there being 39 nappies in the pack that was on offer. I don't even have a baby.) and ask if I think I should have a Chamomile... bless him.

    There's the internet advice of "Is it needed, is it kind?", but I tend to use a work-one, that we use to justify physical intervention with dangerous or disruptive children as a self-check. "Is this action reasonable, proportionate, and necessary?" (More like "Will I get the sack, or a criminal record?" some times, if I'm honest.)

    I have a new manager, and a new assistant manager in September, and I have an awful feeling I'm going to have to sit them both down, and have 'the chat', about me looking fairly normal, but having brain damage, so sometimes I'll have to 'leave the room', and it's better for everyone if they let me do that, and come back.

  • before my bi iworked with adults with mental health issues now im the one with the issues. no abc charts for me though

  • I hate to say this but very few people ever understand unless they been through it. The way I describe it to people it's like a bruise and has to to go through all the healing colours. It's slow. You must not let what others say effect you. It's your brain and your body so as it says not as others say. Maybe try and get them to read articles ect, headway website to try get them to understand a bit more. Do you have a headway near you ? Xx

  • Am sorry you are finding it hard to make family understand I to had this problem with my own kids ,since there dad has come out of hospital after his RTA bleed on brain we have had no support at all .its good you have a friend who can help you , please get in touch with headway and get some leflets and give them to family to look at ,it is flustrating I know but it is not your fault if your family to choose not to try and understand what is going on with you .just take a day at a time like we do and rake care of yourself x

  • I feel for you. I know and see my fiancé suffer with heavily feelings in his head. He says he feels like a hole in the brain. I would hug you, I do understand. X

  • Hi

    As most others have already suggested - might be a good idea to have leaflets/booklets / downloads around the house . I had to have specialists come in to work to explain to the team there what it was like for me - they wouldn't/ couldn't believe me.

    Might be worth asking headway if they could come out to discuss your issues and have at least one family member with you to hear what is being said ?

    good luck

    K

  • Buy them a good book on the subject? There's a list of books written by survivors and family members here. You want something that's a personal narrative, not a how-to book or academic/medical text.

    brainline.org/content/2013/...

    I would recommend getting one by a survivor, so they know what it's like for you. And read it first. If you can research the books and get one close to your own story (in terms of symptoms, prognosis etc) that would be best.

    Lia

  • I know what you mean my husband had the bi but now he looks ok its business as usual. I'm alone with this really. No one understands unless it's your life or you live with someone who has a brain injury. It's not called invisible for nothing. I'm sorry your family don't understand. Everyone does here. Take care xx

  • debbie 36a hello stranger and hows things with you and yours? long time

  • chloe here we go you in the words of david bowie " oh no love your not alone "!!! unfortunately.

    4/12 yrs for me, im on good boy tablets, dont always work.

    i am going to say to you ( and i know i wont be the only one ) as i say to everyone else that has this problem........join a headway group, grab your family members screaming and shouting and drag them along with you....so you meet people like you with tbis and your family meet their family and friends who have to cope with them.

    for me aggression mood swings inaproppriate behaviour, inside and outside the home noise intollerance, tiredness, memory loss, dizziness.

    these arent things that developed immediately but over time, show this to to your family your not a liar, they will never understand what youre going through because they arent like us............................and i would wish this on my worst enemy

  • Thank you for the reply. I find the aggression is what people don't seem to understand most. We get frustrated with ourselves because things that were so simple to us are now a struggle. I take it out on anybody who is around me and they think I'm just horrible but I don't mean it and I have an instant regret after it but at that moment it's an outburst I need to have.

    I feel they think I use my brain injury as an excuse. Just yesterday my dad said "there is only so long you can say you've had a brain injury and it has been 4 months now Chloe" but what they don't realise is that it's long term effects and not just once I come out of hospital I am fine.

    Your post seemed to make me feel a lot reading it because I could relate to parts and that I thank you for!xx

  • chloe it was also something for you to show your family, to show them a head injury doesnt have a recovery time limit.

    i remember asking the doc when i left hospital, his reply......how longs a piece of string. please show this to your family.

  • Morning Chloe,

    Completely understand where you are coming from with this as its the same for me with my parents. I have accepted the new me but they can't. So so difficult. They still haven't read any of the Headway leaflets iv given them or wanted to go to any of the Headway meetings but thats their problem. My wife and I have tried. They also don't accept the fact that I'm an alcoholic and can't drink like normal people so another denial from them.

    We have to try and educate them but again its difficult because you can't teach the unteachable. Horse to water and all that.

    The invisible injury is a problem because they can't SEE anything wrong with you that think your alright and will treat you as such.

    Keep trying and post the leaflets to them if you have to which is what iv done. A plaster won't fix a brain injury only time will and a little acceptance. Take care and have a happy Sunday. Nick Xx

  • Oh my gosh, you can't use the bi excuse after 4 months. Really, are there really people out there who think like this, good god. I'm 6 years next month and still get help physically and mentally. 4 poxy months. No wonder you get angry. As for saying things and then regretting them after , that's normal. 1st stage is you just say them simple as , stage 2 is you say them then realise it was wrong. All my friends and long term boyfriend left me at that point cause they thought I was just being horrid. The better stage can come quite a while later and can't be hurried. I often think about going to see the X friends ect to explain and say sorry but I correct my thinking on they left me at my hardest point so they don't deserve a sorry. "Accedently" leave booklets around on bi and stages so they pick them up when you not there. Maybe for the best cause it sounds like they won't be doing headway ect xx

  • glad you like chloe but have you shown them young lady?

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