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And what people with TBI want you to know

Brain injuries can happen anytime,  to anyone. Car accidents, which I see as an injury attorney with the survivors of brain injury that I represent, are one of the top causes for TBI.  Each year in America, 1.7 million people will sustain a brain injury, according to the Brain Injury Association of America.

While brain injuries do not discriminate, those with brain injuries are often discriminated against.  And misunderstood.

I came across this fantastic article from Brainline.org that explains how brain injury survivors feel by the way they’re treated by people who don’t understand their paths to recovery “Lost & Found: What Brain Injury Survivors Want you to Know.”

Here are a few that my clients tell me they often experience:

On “looking good”:
“My stamina fluctuates, even though I may look good or “all better” on the outside. Cognition is a fragile function for a brain injury survivor. Some days are better than others. Pushing too hard usually leads to setbacks, sometimes to illness.”

On recovery time:
“Brain injury rehabilitation takes a very long time; it is usually measured in years. It continues long after formal rehabilitation has ended. Please resist expecting me to be who I was, even though I look better.”

On difficult social situations:
“I am not being difficult if I resist social situations. Crowds, confusion, and loud sounds quickly overload my brain, it doesn’t filter sounds as well as it used to. Limiting my exposure is a coping strategy, not a behavioral problem.”

On taking it slow:
“If we are talking and I tell you that I need to stop, I need to stop NOW! And it is not because I’m avoiding the subject, it’s just that I need time to process our discussion and “take a break” from all the thinking. Later I will be able to rejoin the conversation and really be present for the subject and for you.”

On patience:
“Patience is the best gift you can give me. It allows me to work deliberately and at my own pace, allowing me to rebuild pathways in my brain. Rushing and multi-tasking inhibit cognition.”

On respect:
“Please don’t be condescending or talk to me like I am a child. I’m not stupid, my brain is injured and it doesn’t work as well as it used to. Try to think of me as if my brain were in a cast.”

We want to hear from TBI survivors. What advice can you give people for how you want to be treated while recovering?

What do doctors need to know to better help you?

What do you want the public to know about brain injury?

The answers to these questions are invaluable. They will help the people better understand what it’s like to live with a brain injury and help us all to do a better job for the people with TBI we’re entrusted with helping.

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3 Comments

  1. Gravatar for Frances
    Frances

    Even after years, the family does not fprget or forgive the blurts, mistakes, misjudgments I made in the post injury period. I squandered huge amounts of resources. I needed a case manager, since spouse was dead. Each TBI survivor needs one...if not family member, then other professional.. As far as MD's are concerned, it took me 14 months to get a diagnosis. I kept saying "My brain is mush," to one doctor after another. They ignored me. I even wrote a book about my recovery "Blurts! Talk About Brain Injury" to make amends with family.

  2. Gravatar for (Ms) Margaret Green
    (Ms) Margaret Green

    As I read the questions and comments above, I was AGAIN mindful of something I have often said before - - and, apparently, will keep on saying. There are so many complaints, YET so few saying THANK YOU. VERY FEW countries in the world have ANY facilities for brain injury rehab., or have neurologists, and other professionals able to give ANY HELP. Say "Thank you" for what is there, and try to form your own new neural pathways.

    Margaret Green

  3. Gravatar for Rebecca Trammell
    Rebecca Trammell

    I see me in this article! I appreciate the article, in fact. On top of the TBI are MH issues predicating the issue. I have to have HEB Lemon Lime Soda and then HEB Root Beer as a "treat." And not being able to get into the store from fear of the crowd or not understanding is over the top. Isolation is not good for the MH issues, but everyone says, "you look fine to me, or you're so much better..." is something I'm am literally ill of hearing. I'm not okay, it's worse than it was before and I have fatigue that is unreal and I just want to sleep all the time. I fight the urge and do things, but then the payday comes as a result. It may not be tomorrow, or the next day, but it comes. I'm degreed, hold licensures, certifications and had an appetite for reading that is there lurking in the background...but it's painful doing so. I like the quotations, I see myself and could add so much more. Thank you for posting this!

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