Why Don't They Get It

[Negeen]

I have explained and explained the circumstances of my brain damage and what it effects and the toll of it on my life repeadetly and endlessly to my mom and she still manages to somehow not understand or get it completely wrong or expects me to function completely normally. It's really making me feel desperate. I'm starting to think she's the one with brain damage, not me!

[iforget]

I think sometimes it is a bit much to expect people to 'get it' ...

the brain is such a complex and miraculous thing and even top doctors and scientists don't fully understand it. Teams who work in the field of Brain injury still don't fully understand what happens and why and why some people recover better/faster/more fully than others. Advances in medical science have meant there is a better understanding of the mechanics of the brain and some of the effects of damage to the various areas but even those in the know do not truly 'get it' when it comes to how we are each affected.

There are so many variables and factors like pre injury personality/attitudes/lifestyle can also play a part.

When we are injured it is a scary time for our families too. When we recover/survive our ordeal they are relieved and they want things to go back to normal asap...

BI effects are often not immediately obvious. Even we don't often realise them ourselves and I would say most if not of all of do not understand them and intentionally or not we often became expert at masking/avoiding. Our families love us and sometimes they don't want to see/acknowledge the problems because doing that, saying it out loud makes it real...

You say

"I have explained and explained the circumstances of my brain damage and what it effects and the toll of it on my life repeadetly and endlessly to my mom ...."

Perhaps that is part of the problem? If someone kept telling me something "repeatedly and endlessly" I think I would probably stop listening.

BI survivors share a common bond, often a set of common experiences and shared symptoms/lasting effects...and yet none if us know how the other is feeling or truly 'gets' what it is like for another on a similar path ... so we can and will continue to empathise because we all know how frustrating this stuff is and can be and will most likely continue to be,... but there comes a time when we have to stop doing things that simply frustrate us further and focus our energies on being the best version of ourselves we can be

Before my injury I had always considered myself pretty clued up on this stuff...turns out I had no idea...I knew nothing, was clueless... and so I do not expect others to 'get it' ...because even years down the line and if I am totally honest, I still don't 'get it'myself...

[aqua4 in reply to iforget]

Hi Negeen, I forget has put this really well. It might be nice though if some of them try to get even a little bit of it ! K

[gabimou]

Hi Negeen,

I get the same with people I work with in fact I don't even discuss it with most of them.

It's like when I have days feeling strange and get comments like it must be the weather!!!!

I would sooner they just keep quiet and say nothing because I don't bother explaining anymore

and even I don't know some days what's going on....

[steve55 in reply to gabimou]

gabimou thing is in their own way they think their comments will make you feel better

[Hidden]

Pardon the pun but its like hitting your head against a brick wall trying to explain how your disability affects you

I have just given up trying to

[Negeen in reply to Hidden]

Lol. Tottally a pun in there!

[Sem2011 in reply to Negeen]

Hi Negeen

Iforget says it all. I tried with my family, so I do sympathise, with the hope that knowledge will help them and you. My parents 'dont get'. I tried headway leaflets etc, telling them my neurologist evaluation , but I thought in the end as they say 'you can bring a horse to water but you cannot make them drink'. I decided to accept I cannot change how my parents react, but I am can ensure I get support from specialists like my neuropsychologist and Headway, and people on this forum. it is true nobody knows what we are going through, because to most it is the invisible injury, we look ok, I limp a bit but often people think I have a bad back. I think the expectation is once we out of hospital, we are somehow better after a period of time, but it the emotions, the changes due to our BI which cause the hardest to come to terms with.

It does get better. I found once I stopped trying to explain hey things are still not okay, and accepted that I could move on, and focus on me and improving my life after BI, my life became easier. I have started a voluntary role, which last year even my neuropsychologist said I was not ready. Please hang in there, there is life after BI, it just finds time to find the right path for you .

[davidj27]

Hi nageen sorry ive not been in touch havent been to good lately ! Had a bad fall yesterday which has set me back it tripped over the door strip on my way in to my flat fell quite heavyly im sure i didnt bang my head but ive been getting really sore heads at the back of my head is sore and i worry that theres something wrong ! I can move my head with no pain but it doesnt stop me worrying ! Tried pain killers they help a bit but not a lot ! Hope you feel better s oon x

[celtic2746]

Nageen i was celtic27465 but forgot the access code so ive set up a new account !

[Negeen in reply to celtic2746]

Lol. It's okay! I do it all the time to!!

[celtic2746 in reply to Negeen]

Hi nageen hope things are getting better for you ! As i said ive had a rough few days due to falling at home its set me back a bit hopefully things will improve quickly ! Hows things at home ? Take care and god bless you david

[Negeen in reply to celtic2746]

Why did you fall David? Things are just okay.

[Nks425]

Hi! Sorry I have been out of sorts for a bit. I had my Angioplasty on the22nd. It was to check how I was doing from the gamma knife a year ago. I had 50% shrinkage. Which according to my Dr. is about normal. It does not get rid of the damage already done but if it can help avoid another bleed great.

I know it's fustrating but like others have said " No one can really understand how you feel inside your head." Be kind to yourself and if others don't understand let it be. Don't drain yourself I think because they can't physically see something broken it's hard to understand. I have friends say you like your old self but I am not.Prayers and hugs that things will get better for you my friend!

xo-Niyani

[steve55]

Negeen nobody can understand what we er going through what its like why we are the way we are because they havent had a bi.........and we certainly wouldnt wish it on them