Headway
5,831 members8,194 posts

FAKING IT!

Had a massive brain haemorrhage back in 2012 due to an AVM (antrivenus malformation) left me with low mobility, mental problems, fatigue, anxiety and more.. my disabilities are pretty much hidden and people (mainly close relatives) think I’m putting on/faking my disabilities.People just don’t get it. This has left me feeling upset and angry. People try to compare me to other brain injury survivors (who are fine now🙄) and just don’t get the fact that brain injury is about the individual. I’m just having a rant and Health Unlocked is where I’ve turned to😬

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I imagine nearly everyone here can relate to what you've experienced and in my opinion a catch 22 situation.

I don't tell someone I've got a brain injury unless there's a need, from experience if you do they can begin to question your abilities and your symptoms, I'm pretty sure there's no logic going on at this point.

This has probably been number 1 on the TBI *hit Parade since the charts began.

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I don’t really care what people think about my “abilities” but it’s hard when it’s close ones saying/thinking it.. Thanks for replying

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I never my experience it’s quite often, denial as in self denial, my parents have a fair bit of that to be honest!

And people wish/hope I guess.

It is intensely frustrating though! I’m fit and healthy looking so even other folks with brain injuries can be dismissive at times, my main issue is faitique, I’m mildly faceblind and my Vestibular system doesn’t work,well. So I can and mostly do a good impression of a human being! At least until I can get home generally any way!

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A lot of brain injury survivors suffer from fatigue and most people say “yea I get tired too” it’s a whole other level of fatigue after a brain bleed 🙇🏻‍♂️

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We, as BI folk, are never going to be able to make them understand because it pretty much not understandable until you experience an ABI or TBI. I have worked with the elderly for 15 years and of those who had had a stroke I never knew what they were really experiencing. It was a sober realisation but now i know! The brain is not really understood by the medical profession etc so it will take a while for this part of the body to more understood. So just let people think what they like and just get on with your life with integrity and courage and talk to others like Headway or wherever. Ignorance is ignorance!

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Thanks for your words.. it only gets to me when close ones make me feel like I’m faking it 🙄

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hi mate, get exactly what you mean, look at me you wouldnt think there was anything wrong with me.

i only go out with my wife and thats a nightmare for her, constantly looking around to see possible kick offs, its anything and i dont realise ive said it until my wife tells me off, i also have a problem with noise, so pubs are a no no, and restaurants can be tricky too.

i was at my monthly headway meeting a couple of years ago when this ( he dragged his foot slightly ) said he wished he had my level of mobility, i told him he was welcome to it and he could have the mental health issues that came with it along with my speech impediment ( i continually swear, but when i type or write, i have to really concentrate, i dont ) , we havent seen him since. my offer was genuine.

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Seems I’m not alone in this.. it’s part of hidden disabilities I suppose.. I too have a short fuse sometimes, but don’t realise I’m being a bit abrupt 😑

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Must agree with other posts. I put on my " face" although not mainly for others but to help me deal with the world .

Close family (some amyway) seem to feel that they know I am fine. I must admit so did my mother.

Until that is I had to move in with her durine a separation from my wife. Well I couldn't keep my act up all day and soon she understood my problems.

Bi is truly a hidden disability. People I have met have even it's my fault for hiding it. I can't win , I either don't function and let the world see my disability or try and mask it and be able to function.

Pax

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Like sealiphone said it’s a Catch 22 situation.. we just can’t win.. it’s different day to day for myself as I’m sure it is for most BI survivors

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Bless you i really feel for you and have total empathy with your frustrations. I had a stroke 3 years ago. Considering how i was in the beginning just getting out of bed was an effort and i remember one of my biggest achievements was walking to the lamp post at the end of the drive.... I am by those standards now doing amazingly well.

On the surface it looks like i am living a normal life and returned back to work although only 3 days a week.

I do however still have effects which are fatigue, noise intolerance and haven't able to return to driving.

I very much doubt there are many people who have the faintest idea just what fatigue means after suffering a brain injury. As you said in one of your posts 'it's on a whole other level' and i totally agree.

One of the biggest problems i have is that dealing with noise also induces the fatigue as well. I've now resorted to private treatment to try and help with the issue.

I have found that as i only work 3 days a week, that some people seem to think that the days i don't work are free to have people come visiting all afternoon or i can go out shopping or go visiting them. I have explained til i'm blue in the face that the days i don't work are for resting and attending medical appointments. If i didn't need the rest days then i would be working full time. I'm quite often useless until at least lunchtime as i find fatigue can really hit me the morning after working.

I am willing to explain to anyone to try and help them understand but i do find on occasions i have to be abrupt and at times that's with close family. It might seem a bit selfish to some people but i just think they're not the ones living in my shoes and dealing with fatigue on a daily basis. It really does help to have broad shoulders.

Whilst i totally sympathise on the lack of understanding you can be rest assured this is the place to come where people do understand and do get it.... sending a big hug your way. x

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Thanks Rachel 😁 from what I understand fatigue after a brain injury is another level known as neuro fatigue (don’t quote me on that lol) and coming here does make me feel better as I realise I’m not the only one.. it’s just hard to hear “it” from close ones. People here actually understand.

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Thanks for that never heard it referred to as neuro fatigue before, i'll have to go and Google. Hopefully it might help try and explain better. On the whole i do very well for support. My husband is amazing and i have very good bosses and most of my work colleagues are great but they knew me pre-stroke so i think that helps . I'm afraid with some people though no matter how much you explain they can't see the past that you look 'normal'. I agree it is hard when some close people don't get it and i have had relationships suffer because of it. It is great to have people on here to turn to and i have made some very good friends from other support sites too. xxx

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Think it may be called chronic fatigue 🤔 but it is neurological

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Chronic Fatigue Syndrome comes with and can be used to describe M.E. Many years ago I worked with a M.E. group providing WB advise and at that point in time M.E. was not considered a true medical condition, so DLA appeals tended to be rather difficult and we think we have it bad.

Interestingly most of the research into CFS comes from America and has been used by the medical profession to try and understand cognitive fatigue following a TBI.

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All I know is the word fatigue gets thrown round too easily, like in makeup adverts etc.. until you suffer from fatigue it’s hard to understand 🙇🏻‍♂️

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i have to concentrate really hard when i type, so whats on the page makes sense, that takes a lot of effort and after this session ill need a a rest because its taken a lot out of me.

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Same here Steve it’s one of the hidden disabilities people just don’t understand 🙇🏻‍♂️x

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Ah I get that.

People forget as I look “normal”.

My mate often says I could work if I still had my driving license!?

He is a solicitor who acts for BI victims.

He forgets That I suffer from visual cognitive and cognitive issues as well as depression/anxiety.

This along with peing partially sighted.

As for fatigue, well I sometimes feel it’s my worst problem.

People have know idea of how it effects a BI person.

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Thanks Jaxs. I myself “look normal” BI is a full on hidden disability and only other people who have suffered BI understand & visiting here makes me feel better as I realise I’m not the only one going through it 🙄

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jax my wife comes everywhere with me, ive been diagnosed with a behaviour disorder and she s the only one who can keep me under control, so work is a definite no no for me.

30 seconds in the interview or less than 1 minute in the job before being fired ha ha ha

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I can identify with that I seem OK so people assume I am

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It can be frustrating having hidden disabilities.

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You explain things clearly here. Just keep on at them. Maybe show them some literature that backs up what you say.

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People just don’t get it or understand that’s why I talk to people here.. “The people” probably will never get it 🙇🏻‍♂️

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a good book for them to read and then they might relate to you better is called " within touching distance " . its by the olympic rower james cracknell and his wife beverley? and its about the way the two of them see his recovery.

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I’ll check it out thanks 😁

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i believe you everyone on site are family believe you and the helpline angels

now look at it that way my friend . see no one except our family here .and angels

on the helpline really no how it is for all of us in different ways in fact id say they no more than hospitals consultant s doctor oh family and friend s now my freind

ive got no freinds except here and id say were a family . now half just never replied

and the rest i got out of my life i have a few loyal freinds family well firstly you were

hospitalized for over a year my freind and also it took me 6 years to find me who i am really its like ive finally took control of what i do is the best i can for others also say if a family member is say thinks your ok well they dont hospitalize anyone for over a year

and confront people nicely about how you feel all day everyday . now i just dont care what people think you no why like you and all are family here send us for another

scan get one of them brain headway identify card s my freind we all have times like your experienceing now and its horrific and so hurtful but id say to you my friend were all here for you 24/7 i hope things work out they normally do in the end eddie

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Thanks for your words Eddiee. I’m going to ring headways helpline in the near future to see where it leads me. I have a brain injury ID card and it has helped me out in a few situations.. HealthUnlocked & Headway have already helped me as I can express myself and I’ve even opened up to family recently.

I’m taking small steps at the moment 😁

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Hi wazza84 just read your post. I thought my husband really understood me but he did not as we are divorced now. People close pretent to understand but unless you have been through it you cannot. Same with people who help us. Yes in theory they understand but to appreciate a persons problems you have to have gone through it I think.

Mufc

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Hi MUFC (cool name😁)

Close relatives, loved ones & friends may understand but they will never get what it’s like having a brain injury only other BI survivors get it. I’m a survivor and even I don’t fully get it I.e one day I’m fine walking, talking, happy-go-lucky guy the next day I don’t wanna move from my bed or physically can’t move from my bed.. I think talking with people on HealthUnlocked helps.

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If you like the name I am guessing you are a supporter? Do you get to go to any matches. The wheelchair area is excellent I think and the man we have to contact to get a place is good. Unfortunately my ex husband used to get me to the matches. So unless I can encourage my assistants to try and get disabled tickets not sure how many matches I will get to. If the match is shown on tv I prefer to watch it that way in my own home where I can go to restroom easily when I want to and put tv on. Stop / record while out of the room.

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Big supporter but crowds, noise and just about everything will send my anxiety through the roof lol.. I prefer to watch the match on tv these days.

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I take it you watched the match on tv today. 😉. Not good🤨

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Sorry it was on sky sports . Do you have that?

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We’re having a shockin season so far but UTID! 😁

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He may have a plan.😂

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Hope you’re right 😁🙏🏻

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Late reply but I need to let go of some of my feelings. I agree people forget we are individuals with our tbi it affects us all differently. My solicitor is making me pay for my husband to live with his women friends that he has got. He could not cope with my moods but has always says he understands tbi?? If he did he would not of left me for other women. This makes me feel like crap excuse my language. I cannot help how my mind takes things on. Yes I said many months ago he was cheating on me but he said I did not understand because of my tbi so he used it against me. I cannot stop thinking about him with another normal women. He was happy enough with me while he was spending all my trust money. Now that has gone he has to. I hate my life.

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I have even had a woman with BI telling me I can’t have much of a BI cos I can manage a lot more walking than she can. I can understand people not understanding BI as everyone with it goes through different things. You think just about every other thing someone can have people all go through similar things. With BI I don’t think there is a single symptom that everyone with BI has or goes through. Some symptoms are more common than others but not everyone has any. Short term memory is one of most common but even that for me is something my mum especially thinks is selective memory as I manage to remember things I’m bothered about and forget things I’m not bothered about. I go to a BI group each week and me and Mam who set it up who also has BI joke with each other about having selective memory. I can also understand why people can’t understand BI as man who runs group says he struggles with certain things like doing more than one thing at a time and then he does manage more than one thing at a time, talking while driving he’s fine with and other day we went on a long hill walk and I was struggling with my balance on uneven ground and he was on phone reading numbers off a card and he managed to help me keep balanced and keep track of phone call. Then something that you would think is easier he struggles with like if he can hear conversations in another room and he’s talking in one room he has to shut door to block out what’s going on in other room to focus on room he’s in. Another time was filling out a simple questionnaire about his BI it was all questions how he felt about it and he had to go in room alone cos he couldn’t concentrate with people talking quietly round him.

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Hi Keeley24

Memory is a funny thing especially if you’ve had/got a brain injury, sometimes random memories pop in my head and I have to tell someone lol, other times I forget what I was talking about mid conversation or somebody will reply to the conversation we was having and I’ll be confused at the reply 🤔 I say this a lot but brain injuries are a hidden disability and I don’t think even the best doctors in the world get it only other survivors get it

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