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. 💬
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.
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...
rant!
How do you learn a language with a brain injury?
