The fear of telling my story to those that don't get it..

[Survivor37]

When I'm faced with people asking how I'm doing I want to tell them about my struggles with living with Brain Injury but can't find the words to explain i just end up saying Hi I'm not bad I'm surviving. I have a real problem with starting a normal conversation some people may think it's rude not to stop and chat but they have no idea of the mental work that I have to put in to have a basic conversation..I have so much to say but I can't speak it verbally..

Does anyone else suffer with this problem due to BI?

[Kirk5w7]

Hi, This is where writing your story helps, you can take as much time as you like putting down on paper how you feel, finding the right words etc. It doesn’t matter if you never show it to anyone it just gets that frustration out of your head.

To be honest I find people are only being polite when they ask anyway, they don’t really want to know so you risk embarrassing them by pointing out that you still aren’t good.

It’s been 10 years for me and I like embarrassing people so I will point out the length of time and say that I cope and that I’m still learning to live with it!

I’m not embarrassed when my brain switches off and leaves me high and dry mid conversation I just say that this is a consequence and wait a moment or two in the hopes I can continue or say sorry let’s move on.

Jx

[Survivor37 in reply to Kirk5w7]

Thankyou for your comment yor insight on this struggle is greatly recieved..I find myself wanting to tell it but can't tell it if that makes sense I try to write things down but I forget my thought process while writing n I soon lose myself it's like my mind does it's own thing when it wants..I still fear society when it comes to my BI I spent years n years putting on a bravado trying to fit in with friends n family..I don't think me shouting out on social media is the right way to do it as I'm opening myself up to judgement n ridicule which is something I do struggle with still to this day

[Hidden in reply to Survivor37]

Hi Survivor37,

Would you consider talking to a counsellor? It might help and perhaps your GP could refer you. As Kirk5w7 says, writing down how you’re feeling- even if it’s just yourself who reads it - can help as it’s a way of getting rid of the frustration in your head. Writing can be therapeutic.

All the best 👍

[Survivor37 in reply to Hidden]

Thankyou for yor comment..I've tried councilling a few times over the years the sessions always start off o.k but my struggle with learning or holding information in my head ment I soon forgot where I was..every session I attended felt like starting at first base and it just confused me..there's not many out there that understand the long-term affects of BI and most professionals look for a quick fix the thing is there isn't any quick fix for BI. Headway has helped me understand so much👍

[Hidden in reply to Kirk5w7]

Kirk5w7,

Your comment made me laugh that you like embarrassing people 😂. They shouldn’t ask if they can’t handle the truth! I agree, most people are just being polite when they ask how you are and don’t really want to know any details. When my daughter suffered a TBI I told lots if people about it, I think it was a way of coming to terms with it myself, now I don’t mention it as I find it too hard to talk about.

[Crazychickangel]

Hi there, I can totally relate. My husband calls me mute now. I used to be able to talk for England ,now the thought of holding a conversation exhausts me. I prefer to have convos with my friends via text. I find when I'm with people face to face it's like I have nothing to say and if there's afew people I can't keep up with all the noise of the conversation anyway.

I guess part of it is confidence too. Finding the right words, remembering what the conversation is about etc.

[Survivor37 in reply to Crazychickangel]

Bang on that I find I can type up to a point but verbal communication is so hard for me I have to think so hard of what I want to say when it comes to saying it I get a few words in I can feel the conversation slipping for my mind then it's GONE..I've always had this problem post BI. I'm starting to backtrack already with telling the world I'm guna stick with you people the world ain't interested anyway 😜👍

[Teazymaid]

BI is so not understood and needs to be understood .. so please tell the world how life is so eventually more people will have if only a small understanding of what life really can be like with a BI … This forum has taught me so much more than Dr .. as they seem to have no idea either ….. this has to change … I wish it could be posted on big bill boards the effects a BI can have on your whole life … fight like crazy to get better surrounded with people who don’t have a clue … keep talking even if it’s small words for yourself and to educate others … sue x

[Survivor37 in reply to Teazymaid]

Love your comment Sue I've found since opening up about my daily struggles living with BI my GP doesn't have a clue n won't even talk to me about it he just Spouts out a load of waffle I don't understand .I'm 4 years into opening up about me living with BI n slowly but surely I am gaining strength to tell my story even if the outside world are oblivious to BI idoubt I'll ever get a straight answer from GPs but that's nowt new this forum is the only place I feel comfortable enough to be able to share stuff x

[Teazymaid in reply to Survivor37]

Yes please keep sharing .. weather it be here , family or counselling .. we all come from different pathways with BI but our difficulty’s are very similar .. unfortunately there is very little help with this and the only help I got was to be told to join headways . From my own personal experience trying to live in a pretend world with no one knowing the real me ( this was nothing to di with my accident) I was determined to be open about all the accident as it has made an enormous impact on my life .. I’ve had two life changing events in my life ..one I buried and the other it didn’t … keep talking even if like me was all stammering to start with sue x

[Astley10]

I feel you mate it makes people judging you coz u look OK people think thers nothing wrong with you .they don't see the struggles just to deal with simple thing's

[Survivor37 in reply to Astley10]

Bang on Astley10 society are oblivious in today's world I blame social media platforms for that no1 sees the chaos n carnage BI survivors face day in day out 👍

[Astley10]

No 2 days are the same people see you walking and talking you seem like your fine they don't know u cany remember if uv had breakfast let alone what you've had .cany remember 10 mins ago or struggle to get words u no what your trying to say but just cany get the words so you try to get a similar word to describe what your saying

[Survivor37 in reply to Astley10]

I call it the ROLLERCOASTER your right no 2days are the same. The working/shorterm memory struggles when faced with conversation from someone who doesn't have BI are overwhelming to say the least...I get lost in my own thoughts trying to say something I can't order the right words from my mind to see any conversation too it's end n it normally ends in jumble words wrong comments the list is endless really what goes wrong when just trying to verbalize thoughts

[Mazda7]

Hello there. I have just joined this forum and read your post and it made me laugh, wryly. Your words mirrored my experiences to the letter. The coping mechanism I use is to lie and 'I'm fine thank you'. Its too tiring and taxing to reply honestly and time has shown mean that people really do not understand. Its much easier if you have a broken arm in plaster. Others can see an injury mending. having a BI usually is not visiable so its hard to understand. If you find it difficult expressing your self, do it on here as this medium is non judgemental and you can take your time to express how you are REALLY doing!

[Survivor37 in reply to Mazda7]

Love your comment thankyou I've become a master at hiding my struggles I had no choice but to hide my BI back in the 80s people's opinions of any sort of disability was horrific I've spent my life being the joker using sarcasm n humour to hide my communication struggles..my thoughts are no1 has give a stuff upto now so there's no point telling em owt..I shall stay with this forum as like you say no judgement or ridicule in here..👍