10 Things People with a Brain Injury Would Like to Hear...

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Please remember, we are not able to give medical or legal advice. If you have medical concerns, please consult your doctor. All posted comments are the views and opinions of the poster only.

Been almost 6 yr for my son. Most difficult thing we've ever been through... How do you stay positive and move from here?

I have had TBI for about one year. I have stayed positive because I used to do ninjitsu. I remember from this martial art that when we are dealing with a situation best to deal with it straight on, this way you can cope. I remember when in this situation been told about the five doors. when confronted you have a choice as to which door you open so instead of open the depressed or the angry door, try opening the more peaceful or thoughtful door. the point is there is always a choice to how you react. it is something from ninjitsu that I have used all my life, especially now..since day one at the Acquired Brain Injury Rehabilitation clinic I have turned away from the angry and depressed door and opened the think forward and positive action door and the gain control door. this got me out of a wheelchair in about 12 weeks. I believe it makes a difference...I hope this helps.

The human mind is powerful. I believe what your saying. We just need others to understand what were saying

Thank you, thank you, I am going to do this too!

I will not stray away from you, you are my friend . Smile, you are so special..

Kind and thoughtful words except for the last word. Saying someone is "special" simply opens up the door for more criticism from people that pretend they care.

It would also be nice to hear, I love you

Okay first of all I have TBI supposedly.  I was in a car accident in a coma for 2 1/2  I had to learn everything over again but I do so much for everyone and when they can't find someone I find the for them I don't even live with someone and I make a suggestion and it's there I can do everything I did before my accident so why do they treat everyone with TBI the same it's getting really old I feel like I'm a kid again and what I want to look up there's nothing about what I want to look up is that because they don't know anything or everything about TBI I think it varies from person to person and also I think the person ask the way that you treated if they get treated like a kid they act like a kid to get treated like they have responsibilities they act like they have it so I think they better do a little more research on the subject case close

I received TBI following a RTA in 1972. I lost my vision speech and my left side Useless. It was worse than learning as a child as I was  5' 10" farmer and rugby player.my Vision slowly returned.It took 30 years for my speech to not stutter, this gave me more confidence and I felt less self conscious. I have to take part in exercises to continue my ability to walk with a limp,I just wonder how long I can continue.How it would be good to run. So lucky to be able to take part in outwardly normal life.Nice to hear you look fine, l understand how any disability effects you.

You are doing great! I admire your strength and courage, please help me to understand what you need me to do to help you.

I need you to help me in a way that can make everyone understand.

Just an FYI for caregivers-watch for loops-being caught in a cycle of repetition that leads nowhere. This is extremely frustrating and would be nice to have this pointed out, because most times we don't see it.

it would be wonderful if someone said 'well done' or 'good job' after I have struggled for ages to do some simple task in their minds.  it is exhausting to accomplish anything and a kind word would mean so much to me.  all I get is 'you're too slow' or 'you need to hurry'.  people need to stop and think :)

I understand what you're saying.

Would be nice to hear at least one of theses... Not sure if I ever have? Living with a broken brain has been rough but I'm still going.


My acceptance of my TBI has taught me that "the old me" is gone, and to deal with me now! # 9 is not true for me!

I disagree with number nine. Because we have changed and that's the problem! Everyone wants the old you back, but that's not possible.

I was told that talking about my brain injury was victim mentality. I got TBI by domestic violence and don't know how to deal with it. It scares me

Physical violence is so horrible. I've never experienced it but I have a MTBI from a MVA. It's bad enough to have a life altering brain injury from a vehicle accident. I'm saying accident only because it wasn't intentional. To have a brain injury from violence is so much more disturbing. I'm so sorry. I truly am

I was in the backseat and the car began to flip and my head smashed through the back window, the two in the front walked away with nothing. I woke up in the hospital forgetting my whole childhood and paralyzed. I can now walk but do not remember my childhood, just middle school and up. Since the accident all my best friends stop talking to me and seeing me, these have been life long friends but now they say I complain and cry to much. Do I want to? No. My emotions just jump on me, I wish they knew that. These times are hard for me, I used to workout everyday and school and work, now I sit at home with an IV and get pumped of fluids. I have lost 50 pounds and continue to lose. More then ever I just want my friends, but they are gone. As the old me is as well.

I so totally understand what you're saying. There is no such thing as a Friend anymore. If there is, they were never friends. I know it sounds horrible but it's true. The truth is simply this... "No one will ever understand unless they experience it themselves".

How very true

At the time of my injury I was a Level III Trauma Emergency Room Nurse.  Now I sit at home and have never been called by my supervisors or my Manager, it is coming on 2 months,  I was in the ICU unit of the hospital, I was there for 3 days until I was downgraded.   I have only been called by 2 nurses I work with and other nurses are telling them to ask me what I need.  If the nurses really cared they would put out an effort to talk to me and assess for themselves what I need, I sometimes cannot express what i need and also call some of my conversations, word vomit, and when I hear another you told me that yesterday I actually repeat it again every 30 minutes until i get my point across that yes I will excuse your rude behavior but that that person will have to put up with what I call "my therapy" until I feel their ignorance has been handled or in other words "reeducated".  I am proud to say I spent seven years taking care of patients in the emergency phase of their care and being their voice and their advocate to their families very sad I may not do this again,  I am a medical professional with training in this area and it is still very hard for me everyone is not alone

I suffered a TBI in 2008. I am what some call, "high functioning". People don't seem to understand how hard EVERYTHING is for me. A lot of effort goes into not looking helpless. I don't know which words could be said to make me feel better. I, most likely, would forget them pretty soon after hearing them, anyway.

I hear your pain


I have a brain injury and people try to do everything for me and do my thinking and just drive me nuts if I do things on my own then they come and baby talk me then say I do a super job and then critique what I do. Then do my house cleaning or laundry

I've been reading and learning a lot about TBI. I'm so sorry for all the hurt that my words actions have caused you. I will never get in your face or complain about things you haven't done yet. I understand that this happened to you because you fought for our Nation and were providing a great life for me and our kiddos! I promise that I will NEVER call you names or make fun of you again! I will never nag at or blame your for my problems.

This July will be 19 years  suffering from TBI.. And  only 5 years ago  I finally found a doctor  to help me with my issues.. The memory is the worst  part of  my life  like remembering  to take my meds remembering things  my wife ask me to do  and just dealing with everyday things... The  biggest  and dumbest thing  I have ever heard is ......"there isn't anything wrong with you" and "Your just as normal as  anyone else you dont have any issues."

i will walk beside you on this new journey in your life, if you would like a friend. at your pace

Saying... "at my pace" is hurtful

Do you have any paperwork that you might need help filling out?

Ask yourself why your asking that question

I wish family could be more understanding. Just because it happened 12 years ago doesn't mean I'm all better. Some symptoms will never go away. Like narcolepsy anxiety etc.

When I was six months old I suffered from a TBI. I'm now twenty one and many things have been said to me and the worst one ever said to me was " your first real steps were your last real steps". That one gets me the most. It's hard for people to understand what we have gone through but that's no reason to be rude and hurtful to us.  

I would like to hear .... They finally approved your social security .... After all these years it would be great! Been A TBI Survivor since 1975 when I was 1yrs old.... makes me wanna cry now just thinking about it ....

My husband always tells me he just wants to help me have the best life I can. It is very comforting. It is not easy to be a carer or to be understanding at all times. When he is frustrated or cranky with me I remind myself that he does truly care and has been an incredible support for the past 12 years since my brain stem stroke and surgery.

I may not mention your health issues however I know you have them and I know you struggle. Please let me know when you are not coping or need to rest.


Trying to understand isn't going to work

That people don't believe you because you are high functioning at times and apparently look normal but they don't see the struggles you face. That people would just listen and believe what I am experiencing is very real for me.

If you take longer, can't do something as well, or need a certain thing:

"It's OK."


"What would you like to do today?"  

When you say...
"If you take longer, can't do something as well, or need a certain thing",
is pretty much saying that you know there's a problem. Not a good thing

I'm over 14yrs post severe TBI. The WORST thing said to me is "you are living in a NORMAL world, you HAVE to be NORMAL!"

The worst one I've heard was ... "you're socially stupid"

In addition to most all of these things, I would appreciate not being preyed upon.  Don't steal my inheritance, because it would be "wasted" on me or take my home, because you think people with disabilities don't deserve dignity, respect, nice things or a life.  Don't assault me, because you can get away with it, because the police will just lie, and say it never happened when it did, and then don't cause me more brain injury as revenge.  I have a brain injury, and even though I may not be able to organize my thoughts, I do remember clearly without hallucination or conflation.

I HATE when people tell me that I'm to high functioning for TBI. I have speech impediment, memory loss, hard time processing auditory information, have difficulty with coordination, word and reading comprehension, etc... I maybe able to have high levels of conversation and be able to walk without assistance but don't you DARE tell me I don't appear to have a TBI

I hear you and completely understand

Im about 20 years out from a serious tbi. im able to be a functioning member of society. i have some memory problems still, coupled with a knee injury. i have to try harder. but, thats just the way it is. i dont set unrealistic goals. i try to keep things as simple as possible. for example, my place is small. that way i dont lose track of things and its easy to keep things organized. i dont have a checking account. dont need one. its just unnecessary clutter in my mind. i write myself notes if i need to remember something. i never wanted kids or a family like that. i do ok for myself, but would struggle to support a family. i try to keep things as simple and strait forward as possible to eliminate confusion.