Adjusting to life after a brain injury can be challenging, but having people in your life who recognise and accept the changes can be a huge help.
Today, we're inviting our wonderful online community to answer the following: "How do you encourage others to understand and accept your brain injury?"
Please do share your comments and experiences below. đź’¬
My friendship group has always hosted a Christmas dinner party during which we each give a short presentation on what we're up to in our lives, because it gets harder each year to keep track as we all get older and marriages, children and career moves start to add up!
For me, this year was the ideal opportunity to walk everyone through my brain injury in a friendly and informal way with a mix of humour and sincerity. I covered the details of exactly what I went through, what the diagnosis was, how my daily life has been affected, and how I see my future. It really helped me deal with my own emotions, and it gave my friends the chance to see that I am still the person I always have been. It also meant that everyone had the same baseline of facts to understand, rather than hearing things second hand or getting slightly different versions of the story!
Before this, I noticed that people visiting me at home after my discharge from hospital seemed somewhat nervous at first- having heard the severity of my illness I think some were expecting me to be 'changed' or unfamiliar in some way. Nothing beats meeting and talking to the important people in your life face to face when it comes to helping them understand!
I've found people tend to take me at 'face-value' and it is difficult for them to understand what I experience as my symptoms vary a lot.
Nevertheless, I'm upfront with them if I think I may experience some issues while I'm with them, then at least something has been said.
I think friendly bits of information (hospital/doctors clinic/where the general public gets a glimpse?) goes a long way to understanding the hidden aspects of a Brain Injury. I think it's common knowledge about seizures (except micro-seizures) and it's pretty obvious when you're in a wheelchair, but like I said, there are other hidden symptoms that the general public might not take into account when dealing with a person.
I feel so lucky to have close friends, some old & some newer who take me as I am. It's always easier sharing with the friends I have met through Headway. You don't have to explain issues to them. For the others I try & use examples. The between Christmas & New Year period was helpful as explanation of me now. Asked friends to be thinking of that betwixt week when you're not sure what day it is, if / when you should be at work, who you are supposed to meet today, etc.... Told them that feeling is mine several times every day of the year. It surprised some of them for sure.
when the nhs don’t believe it makes it extremely difficult, especially at home when they see the letters saying they don’t understand your issues in terms of mTBI. The arguments to explain why simple things are hard is draining
be open with your family and friends so they understand how you feel, how difficult life can be dealing with a new brain Share your experiences and include them in your rehab .. try not to be too alone In what is a very loanly place .. they may never totally understand .. but the more information you share the better .. even if you have no way of explaining things just say “ I have no way of explaining what this is like “ as this will at least explain how bizarre this new brain is .. Sue
People are interested in their own lives. I find my new stick signals something is wrong(!) but generally they don't get it - it's too invisible.
Snap the sticks are visible like when my arms were in slings .. 🥴
An old friend was explaining to me in great detail how she felt with post Covid brain fog and fatigue - when I said 'welcome to my world ' she was really startled, even though we've talked about everything before and after my MTBI - so I guess I just didn't explain very well before...
People will have no idea unless they have experienced extreme trauma .. it is only these people who actually understand the magnitude even if what they have is totally different experiences .. that why these groups help so much Sue ❤️
As a general rule I don't. Why? Because unless they have experienced a brain injury themselves, it is just about impossible for them to understand. In my experience it is an exercise in futility. It really has been more about me accepting how people react/respond to the new me and not take any of it personally, as I have accepted they probably will never understand anyway. That said, here are some ideas that came to mind, as far as possibilities to deal with this new me better.
One thing I did in my business (before I ended up having to sell it, as I could no longer run my business anymore) was to tell my employees they would probably hear me swearing and carrying on because of the damage done. And not to think I am reacting to anything they are doing or not doing. It is more about my own frustration about me not being able to do what I used to be able to do easily. That seemed to help all parties tremendously.
Another thing I've done with those I interact with most is to setup agreements about certain behaviors or actions that seem to come up quite a bit and how we need to handle them going forward, so they do not need to get upset and I can take a time out and come back and resolve it when things have calmed down. I always let others know my, I'll call them tantrums or out of control comments are totally my fault and has nothing to do with them causing it. It is all about my frustrations with inability to do things like I used to be able to and no longer can do them the same way or sometimes not at all.
Anyway those are some of the things that I've found work for me.
tbi in 2000, divorced 3 years later. 1 of 4 siblings. Only speak to 1 brother. Sister who worked with people with brain injury, manipulated £ 10 k out of me, lost all friends, biggest problem was couldn’t accept the new me. Saw the old one and couldn’t accept changes. Thir loss?!! Found new friends as recovery continues either at day centre or strangers who never knew the old me!! I now have learnt to SMILE to my stupidity?!! Had counciling and all sorts, took part in research study into brain injury at NISE helped me greatly. Accept the new me & move on!! Their loss as am emotionally numb, thank god!!
rant!
How do you learn a language with a brain injury?
