Will people ever get it ?

Just had an interesting conversation the other day with a friend.

He said he knew why people dont get my disability.

" you hide behind a mask . If people cant see what you are like how can they get your disability ?"

Okay he had a point I suppose.

But he also missed the main thingWif I dont have this "mask " I camt function.

Catch 22 I know .

Pax

22 Replies

oldestnewest
  • Ok Pax I see that, but is this mask the one of trying to be the person you were. What does that friend want, that you don't try to be " normal" ?

    I try to be " normal" all the time, it's part of trying to get back to me. I doubt I could behave any other way, but what I do do, is admit when I'm not coping and tell people. By having this mask, I am slowly getting nearer the old me, it's what we and society all want isn't it?

    It strikes me that that person really doesn't understand at all , and why should they.

    Best wishes Janet x

  • Hi Janet.

    No the old me is dead and gone. I have finally accepted this.

    The mask is me being calm and together whilst inside my head is turning over and over.

    Also the mask lets me blend in and be normal.

    Like I said catch 22. People dont see the disability because I cover it up.

    Pax

  • It's like a facade we have to put up to protect ourselves not sure from what though.

  • Probably from ourselves ?

  • Spot on Pax ; we're our own worst enemy. Pride causes us to walk as steadily as possible when it's more natural for us to veer all over the place and to keep quiet rather than show how we stumble over words & forget what we're saying etc., etc.................

    And the better the act, the more misunderstood we are !

    You're right ; it really is Catch 22 ! xx

  • You have just reminded me, regarding the trying to 'walk normal', Cat. When I was working I was at great pains to walk more normally if my Area Supervisor was visiting ( fear of appearing less capable for work ). I once tried this when a new late office worker I had not seen before was staying late - didn't want to draw attention to myself, so forced my leg straight and made it most of the way down the long office, really pleased with myself then suddenly fell over my own foot ( the unnatural position for me must have accentuated the foot drop ), shrieked and went flailing through the doorway - epic fail ! Mortifying ! I decided it was best to walk the way which was safest, no matter what it may look like, after that : )) x

  • Good plan Angela ! I must say though, I've never worn expensive footwear but last week I spent £100 on two pairs of shoes (egged on by my sis-in-law) and my gait has improved dramatically with both pairs............and they're stylish too.

    I don't know whether it's psychological 'cause they're so blissfully comfortable, or whether they're more supportive ....................but what a massive improvement.

    I felt guilty 'til I walked in them for the first time ; now I just feel liberated and very, very pleased !! xxx

  • sorry but reading your tail reminded me of a dick emery sketch.......the oh you are awful and she then walks away.

    no offence intended

    steve

  • Lol Steve ! - a proper blast from the past ! : )) x

  • No, I'm really not offended Steve. In fact, now you mention it I did a great impersonation before the new, improved footwear ! :D

  • Agree Pax it is a catch 22......But for me my goal is to get out of catch 22. And through acceptance and not being embarrassed/afraid to show my B.I I am achieving my goal slowly but surely.

    I have had to stop worrying what other people think and often say " if you don't understand why I do certain things ASK")

    Honestly, the times we have parked in disability spaces and I've got out the car with people looking at me and checking the car for my badge. I've made my balance worse so they think I'm worthy to park there, how bloody stupid of me 🙄

    This saying YOLO (you only live once) has taken me ages to get, but it's so true. I now want to live the best life I can with a brain injury and YOLO is part of my daily thinking.

    More often than not I still wear the blessed mask, but like parts of my brain injury it's hidden. I will never get rid of either, but I now know how to manage them both better

    Take care Pax

    And remember YOLO 👌😃

  • I have long since given up wearing a mask, Pax. The physical stuff is impossible to hide anyway and even if I start off trying hard to be 'with it' and on the ball, the cognitive is sure to show up and announce itself soon. I am lucky in that I'm mostly very chilled ( chilled or fatigued ? ! ) and it takes a lot to upset me. I 'let it all hang out ' ! I just think 'this is me - accept or reject, as you wish' : ) x

  • Physical things cant be hidden. I walk with a limp on my left side and occasional end up on the floor due to it giving way.

    Its the bi that I have problems functioning without my mask. One day I will ......one day

    Pax

  • Even the obvious physical stuff has it's own 'invisible' limits - you can't 'see' the pain of spasticity, or the increasing muscle fatigue and loss of power until limbs are literally not supporting. I think you have some numbness/loss of feeling, if I remember rightly - another invisible sensation that interferes with how we function. I have long since given up trying to explain to others. I think because we are not natural 'complainers' ( we all know people who have a repetitive list of physical complaints ready every time we meet them, and dread having to say the trigger phrase 'How are you' ! TBH some of them don't even wait to be asked- just launch straight into their complete medical history to anyone who feels politely under obligation to listen ! ) that people make the assumption that we are better/more capable than we are and expect more from us than we can manage. I suppose it is difficult to get your head round, seeing me toddle about for a bit stick free, then using the stick later on when the muscle fatigue has kicked in ! Then a few hours later, after a long rest of legs, I might manage for a bit stick free again ! I've often wondered if people just think 'I've seen her walk without the stick, so she clearly doesn't need one - she's putting it on !

    Same with brain/thought fatigue - what we could manage earlier becomes a confusing struggle for comprehension later. The need for 'time out' or quiet to recharge - even my partner does not 'get' this so it is up to me to remove myself to a peaceful place. The 'payback' for overdoing it and ending up in bed/needing a quiet day or number of days to recharge back to our best level. So much invisibility within our conditions that is hard for others to understand. x

  • Yep thats right I have numbness/loss of feeling in my left leg hand and back.

    The best is when asked how you are and you have a head cold . They then reply"Iit's ok for you, your used to head aches".

    It still bloody hurts though. I once burnt my left leg and was told at least you can't feel anything. Errrr thats not the point.

    Friends can be great sometimes.

    When asked if you are ok and you say yes do you then get that look followed by " but I thought you were ill?".

    Not ill just a little damaged is the best response I have come up with.

    Oh I once told someone I was mad......mmmm come to think of it aint seen them since. I meant mad of having to explain but hey one less explanation to give.

    Pax

  • Can relate very much to this - though would add that actually I think a lot of people have "masks" they use to cope with life anyway. Something I remember talking to various people about before BI - let alone since .... A face / persona to wear in the playground picking kids up / a face to show at work / a different one at home and another one for dealing with people in a shop for instance ... Isn't that the "British" thing to do - when people ask " How are you?" -most reply " fine thanks" - rather than the truth ..... and the times people have said to me " oh, but you always appear so cheerful and smiley" - before BI and since .... but worse now that I am having to hide more internal stuff than ever .

  • Totally agree!!! You do your absolute best to come across as if you have no problems and are the same as before your bi, it drains you and takes so much concentration that tiredness kicks in and you want away from social circles! It was trying to explain this to my family that caused our fallout.... I would so love them to understand and even live it for a week to get an insight into how we feel and how much effort it takes for us to "appear" the same as before! Def catch 22 and that's without including the overwhelming emotional side of things and the fear we live in some days!

  • Instead of mask my OT expressed it as "you cover your difficulties very well"

    It is the covering up that makes life possible we just take longer to do the normal things and that's OK.

    It is better to live as well as we can and do our best to ignore or educate the lucky ones who aren't in our club.

    On good days I try the educating route and on bad days I do my best to ignore.

    Love n hugs

    Xoxo

  • I know he meant well. He was trying to get me be myself warts and all.

    But he missed the point of why I do it. I don't do it for other people to feel ok andat ease but rather to help me get through the day.

    It was frustrating having to explain myself albeit well his good intentions.

    Pax

  • Funnily enough I was off for 1 day last week after doing horrendous shifts over a 2 day period so decided **** it I'm not going in Monday I felt absolutely tired/off balance and dizzy.

    We now at work((this is for everyone who is off sick) have to have an interview with our main boss who asks numerous questions why you are off sick etc etc and its all done on tablet form which we sign so it automatically goe's to HR.

    I noticed the reason they had put tired, so I disputed the fact and said I was dizzy and off balance which is actually the reason I didn't go even though on many occasions I have gone to work I was just trying to prove a point.

    In the end I actually got really frustrated with my boss's attitude who said I understand i told her no, you don't ,try having 2 brain ops and a serious ear op(mastoidectomy) then you may understand.Filter to mouth went in overdrive...oops

    The reason I went into overdrive I mentioned about the shifts we do and the reply was we cannot show favouritism and everyone is working under stress which rubbed me up all the more and again I fired back by saying just because I look ok from the outside no one has a clue!!!! so I really went for it.

    There is a lot more to this but it's to long winded to go into but its an example of how people see you and what they don't know.

    I'm not one to keep quiet if someone pees me off anyway but just before I finished I turned round and mentioned my attendance was excellent before I took ill!!!!!

  • Gaby, that's a fine line there, regarding their 'favouritism' comment - I would be thinking 'reasonable adjustments at work' for a disability, if a change of shift pattern might help you x

  • I don't see it as a disability and have never even thought or crossed my mind.

    I understand your meaning of favouritism, the wrong word they used .I'm not UK based and things are run totally different and they are not used to dealing with these type of problems due to lack of experience in my eye's .

    I believe the company should start looking closely at sending managers on some type of training course in how to deal with hidden an hidden illness.

    It's something I have thought about on many occasions in mentioning to HR.A colleague of mine in the same dept has MS and has had a few problems with having time off and in how the situation was handled.

You may also like...