Weighing on me :(

I just want to offload something that has been getting me down over the last month. I volunteer at 2 different Headway groups as well as being a service user after my ABI from TBM in 2008.

I had to take ill health retirement from a snr role in 2011 which I've found depressing but find that volunteering at Headway helps me repay for the help they've given me.

However at both meetings last month, I was verbally attacked by two different guys that appeared to take offence at my positive attitude and questioned what my brain injury was and my right to be at the meeting.

Whilst the facilitator stepped in and later sent me a message to say how much my voluntary work is appreciated, it is weighing on my mind.

I haven't got an obvious injury, I'm fortunate to be able to articulate my thoughts and aren't physically affected either, but my abilities to process information, control what say as well as a number of other things all impact me on a day to day basis and will forever onwards.

I'm not going to apologise for being fortunate and being less affected than others but I almost feel as if I'm expected to.

Sorry, just rambling now

15 Replies

  • Hi Mads

    Ramble , ramble ,ramble away.It may help calm you down.

    I suffered a bi after a rta in 1999 and like you have few outward signs. I have battled to become " more normal" which helps ME fit in.

    I have good and bad days but no one sees the bad days. I volunteer as a walk leader which may sound strange as I have walking problems. This has been questioned by some and even my reason for being part of headway as in their words " theres nothing wrong with me".

    Oh how I wish it was true. Dont people realise we only function in the real world when at our best, and even that may take four times the effort. Maybe I should wear a T shirt listing all my cognative problems after all it is not usually the first thing I tell people on meeting them.

    Unfortunatley some people are narrow minded and even can be jealous of your recovery. But remember it is not a compotition to see who is more disabled and should never stop you doing what you can do.

    Please please please keep on volunteering not only for the sake if your local Headway group but for your own sanity and well being.

    As for disability , well everyone has something they cannot do so therefore are disabled. Maybe we should be classed " unabled" .just a thought.

    Sorry for going on but it gets me mad when others ( especially ones in the same boat ) pull you down.

    I know that the reason they are like this is probably due to their bi but it still deflates you.

    Sorry again for long reply but KEEP ON VOLUNTEERING . You do it for you after all.

    All the best Pax

  • Thank you mate, I needed to hear that. I've tried my best since my bi to try and get back to 'normal' and are only just starting to accept that this is my new normal.

    I mustn't let the buggers grind me down as the saying goes.

  • Hi Mad's,

    Just to point out you just said sorry ;-).

    I often read posts here and feel a bit of a fraud or less worthy than others or jealous of the recovery others have and are making and, just maybe, it's the jealousy of your truely great attitude and your giving back to others that caused them upset.

    Please don't give up your valuable voluntary work, it is highly valued and greatly needed.

    Also sometimes it's easy to forget that BI effects us all differently and dependant on the area of brain affected, can cause unwarranted outbursts. I know I sometimes find the real 'me' watching BI 'me' through a misted window and totally unable to stop BI 'me' from saying some truely vindictive or angry things and the pre BI 'me' has no control over that and ALWAYS feels desperately guilty afterwards.

    This isn't an excuse for the people that were being offensive but merely a thought that just maybe it was their BI 'thems' way of venting frustration in a totally uncontrollable (for them) way, at least I certainly hope so.

    Never, never think you're not worthy of respect, in fact given your recovery and the strength in volunteering to help others just re-enforces the depth of your strength and your great importance as insperation to others.

    Take care. You ARE valued.


  • Hi Mads

    Just to say I agree with every word paxo and sporan have said .

    Please rest, recover and realise that you are aspirational and inspirational to many.

    Another point is that your willingness to work at getting back to normal could possibly be something people with other types of bi cannot get their heads around.



  • Hi Mads,

    You do a very special job, helping others with BI. You are going to meet all kinds of people, some naturally more upbeat, positive and outward looking, others not so. Depending on their circumstances, level in recovery and the injury itself ( which may directly affect mood/inhibition ) there may well be moments of anger/jealousy towards your good level of function. Never be sorry for your level of recovery - it is only because you have reached this stage that you are now in a position to be able to volunteer and use your experience and abilities to help these others.

    With regards to the cognitive or 'invisible' disabilities, we often adapt/compensate and learn to hide them well, too well sometimes !

    It is hard, very hard to have someone make the assumption that all is okay with you, just because during a small slice of interaction with you they see no problems. I always think that if people spend long enough around you ( certainly in my case ) ,some of the remaining issues will eventually reveal themselves, stuttering, word loss, concentration, memory,fatigue etc.

    It was wrong of these guys to direct their anger towards you but perhaps you can forgive them, making allowances for their personal circumstances. As we all know, BI can cause a multitude of disruptive emotions , both directly and indirectly, during the journey of acceptance and recovery.

    Take care, Angela x

  • As an afterthought ( and much of my thinking is afterthought ! ),

    perhaps this unsettling event could be used as a springboard to organise a talk at Headway on 'Invisible Disability' ? Might help to offer this knowledge to those who are unaware of the less obvious but equally difficult cognitive issues that can result from BI. Turn your negative experience into an opportunity to educate ? x

  • Great idea Angel! I like your thinking. I'll discuss with the facilitator to see what she thinks ;) x

  • Hi Mads. So sorry that you have been made to feel like this. Like you I am a positive thinker. I have a long-term BI and am always likely to have some deficit. But my problems are personal to me - v bad short term memory, balance issues and some difficulty getting words out. I don't make a song and dance about it and most people don't even know about my BI. It doesn't mean the these things aren't there though. I completely agree with you and there is no way you should have to apologise for your positive outlook or explain yourself. Some people seem to only look on the bad side once they have a BI. But I really believe positivity helps. If others can't accept you for who you are that is their problem. Keep going just as you are.

  • Yup, Mads, its a bugger. I posted a reply to Jan on this site earlier today just saying that its invisible and everyone assumes all is well and its all over and hunky dory but no, it is lifelong and e v e r y single thing we do has to be thought about, planned and recovered from. No wonder we are grumpy and knackered. Been there, mate. TBM gave me an ABI too. All we can do is take a deep breath and keep going. All the best

  • Hi Mads, not good when colleagues, especially in the health voluntary sector, make such insensitive remarks. I'm guessing (don't know) that they haven't got or had brain injury, because if they had, they should understand, they must know from all of us here, how difficult life and thought processing can be, when we all "look" ok!

    without Headway, (and the other community forums) and these discussions where would we all be, we NEED & WANT people like you.

    how many times have we seen said on here - be it family or friends, I even had a doctor say it to me - "well you can walk and talk, so what's your problem? " comments like that help nobody and are probably said because they don't comprehend at all, what happens to neurotransmitters when there is a BI, whatever the cause of it.

    I think everyone on here writes very lucidly, are articulate, and intelligent, those words we write come from our minds, a different part of the brain! And how many of us now rely on spellcheck, cos we hit the wrong keys through bad hand/eye coordination Unfortunately when memory loss also comes in a lot. e.g. out at a quiz again last night, so often I'd hear a question and think oh I know that - but could I remember, no! had to get the thought processes working, albeit slowly, to put the relativity of a question into its own context. I always write relevant parts of every question now while I'm thinking it over as rest team, if they didn't know, continued with other questions. they are always verbal ones, my worse hearing since BI doesn't help either! Some of them, the answer came straight away!

    You of all, surely must be invaluable to Headway!, and must understand better than most! I know sometimes if I've phoned, I ramble on, and received the utmost patience from whoever I've talked to, so I hope you'll be able to go back, if you want to and pls don't give up on yourself! Shirley xx

  • It's one of the the things, I worried about both joining this forum and going to the headway meetings is that while I do have a injury it's fairly mild and I'm tall fit and strong.

    In every scpear there are people wanting to judge, or play the I'm more *what ever* than you etc.

    One of the interesting things I find is how similar the various Simpsons are insight of the different scale and type of original injury.

  • If you were worried because your effects are 'mild', I was petrified because my illness was never officially recognised and put down as FND !

    One of the reasons why I was drawn to this forum was the fact of the similarity between symptoms - I so recognised myself in many of the posts ! I believe there may be many people dumped in the newly invented FND category that have genuine neurological damage but never got all the relevant diagnostic tests. I suspect that the Psychology department is overwhelmed with this new influx of so called 'all in the head' patients. Either we have suddenly become a nation of people with conversion disorder or someone is not doing their job !

    So in that respect I truly am the 'odd one out', yet somehow I seem to fit right in : ) x

  • Mads, remember that there are many of us who look normal, and it's only when we muck up that people realise that we are different, you are not alone. Wish there was more awareness training for invisible BI, MS and the rest. Wish I could swap lives with certain people for 24 hours, that would teach them.

  • I'm the same I'm 41 had mine 3 years ago although I've no feeling on my left side arm is paralysed I can walk a bit holding on to someone but it's not about that is it unless people have had one they will never understand how hard it is for us to try to retrain our brain and I think it's disgusting what they said and they work for headway if anyone has a right to be there you should you have the knowledge they don't I hope you have reported this xx

  • mads1975 cant be very nice people may be you find yourself a group who are more appreciative.

    where abouts are you

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