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

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

BrainLine asked our online community to share the things they would most like to hear from their friends and family, and the list below captures some of the many responses so generously provided by people with TBI.

Every individual’s experience with traumatic brain injury is unique, but there are many common symptoms and emotions. Anger, fear, depression, and anxiety may be accompanied by difficulties with memory, pain, and the challenges of maintaining relationships.


1. I'm sorry. How can I help?
– Alison

2. Please tell me what having a TBI is like. Can you tell me where I can read more about TBI?
– Melody

3. I don't know how you feel, but you are my friend and I will always be there for you.
– AmyRenee

4. I admire your willpower. You will get through this.
– Amina

5. I know I don't understand what it's like, but I will try my hardest to be patient and understanding.
– Christy

6. Take your time — we are not in a hurry.
– Lisa

7. When are you going grocery shopping, I want to go, too. Or, what yard work can I come do?
– Darla

8. I don't know what to say but I'm sorry it happened to you.
– Crystal

9. The you that is YOU hasn't changed. You just have a harder time thinking than you used to.
– Fred

10. I will bring you some delicious healthy brain foods and snacks — and come to sweep and do laundry, but don't worry, I won't stay too long.
– Heal Your Concussion

We encourage you to add your own definitions in the comments section below and to join the BrainLine community on Facebook and Twitter.

Posted on BrainLine February 28, 2018. Reviewed July 26, 2018.

Comments (175)

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.

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".

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 GET REALLY MAD WHEN PEOPLE SAY, WELL YOU LOOK ALRIGHT TO ME, IGNORANT BASTARDS, IF THEY SAID. I CANT IMAGINE WHAT IT MUST BE LIKE FOR YOU, BUT IF ITS ANY CONSOLATION, YOUR LOOKING QUIET WELL. IT WOULD MAKE ALL THE DIFFERENCE. GOD BLESS ANYBODY WHO IS GOING THROUGH THIS SHIT, STAY STRONG, AND TRY AND STAY POSITIVE, X DENNIS.

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.

I WILL TRY TO UNDERSTAND.

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."

and

"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.

Follow through with your offers of help.  So many times, people say "anytime you need anything, let me know, I will be there to do whatever you need".  Yet, whenever you need them, everyone disappears. 

So true isn't it ?
Once you experience a TBI, it's very easy but unfortunate to see who these so called friends are.

I believe you and that day to day struggles are real. I wish family would not get defensive and take it personally. Some days im worried about the future because at this point I dont know what to do. Its like I lost the ability to plan and my past jobs are so spuratic that nothing makes much sense. Im 25 years out and wish I had the connectivity and figuring things out again. Its hard to explain.

I am an advocate for people with brain injuries. I let them take their time when trying to do a task.  They feel so wonderful when a simple goal can be reached. Be patient ,kind and understanding. Take them on outings, the store,a walk, a meal, helping clean their house or something they enjoy.  Most  of all be patient and kind !Do not judge,make fun of or put anyone to shame. Remember  they are people too. Its never a burden to help a person with a TBI, its a joy to help friends!  Aloha

Can you tell me how you feel?

I am coming up on 15 years, this August and my FAVORITE comment has always been:  "so, are you completely recovered?"  If they only knew the journey that lasts a lifetime....

I have suffered from TBI since 2007 & am still dealing w/memory issues, since of direction & depression. I Ann able 2 return to work in a different career as before the TBI. I'm having problems getting support from my family financially due to me being on disability & not having money to purchase the vehicle to perform this job. Being told no so many times has made me stop wanting to try anymore.

I'm in my 10th year adjusting to a TBI, PTSD and constant chronic pain from extensive back and neck injuries from a vehicle collision. Having extended family and friends not believe my injuries and challenges are real is like salt in a wound. When I'm in sweat-soaked sheets fighting chills, sleeping by the toilet, having nerve ablations, or standing lost in Lowes...I chuckle to myself "Yup, I'm faking this SH@#!" I'm walking by faith, and not by sight. Heaven's a Pain-Free Zone...ya just can't get there on your own terms. Never quit!

It will be 18 years this July that I have survived TBI. It does not go away, but life has gotten better. Still, I take back to lessons I learned when i was recovering, to hold ground to who i am and grow from that.

I was in a car, stopped at a cross walk, rear ended by a truck. "Only" injury was a delayed onset TBI (30 min. maybe?). Why didn't you go to the hospital in the Ambulance? Well, because they asked if I wanted to go. How dumb is that? Anyway, lost my home, lost my business and lost me. Would have liked to know there was support available from BIA and 'net.

My son has TBI! It is very hard on individuals who have this problem! It is hard on the family as well! The ups and downs ... not knowing when they are going to explode next! God Bless you all!

I get depressed every time I'm done working. I have a tramantic brain injury. Of short term memory problem. People at work talk on the phone to people about me all the time. And to the guests. I work as a housekeeper at a hotel.

I wish I'd heard, "It's OK if you can't do that right now."  With my family and at work, there was no space to say I wasn't up for something right then without getting blamed or told I needed to do it anyway.

I wish I'd heard, "We're really glad you're here.  How can we help you make this work?"  I was often criticized, told I couldn't participate, or made to feel like I shouldn't have come.

I wish friends and family had accepted the symptoms I was describing, instead of saying I looked fine and implying it was just something I was making up, or that I was overreacting.  TBI symptoms are described by doctors as being "sporadic" and "diffuse," so it is actually normal for someone with a TBI to have trouble with something they had been able to handle yesterday, or to report a collection of odd symptoms that don't seem to have any relationship to each other.  

I wish people had listened and responded instead of nodding, saying, "Oh, uh-huh" and going on with what they were saying or doing without really processing that I'd just said I was having trouble.  

I love you today and tomorrow!

~~9. The you that is YOU hasn't changed. You just have a harder time thinking than you used to.
– Fred

I have amnesia, I lost my identity and almost all memories, and went through hell for 5 years after the injury. I recently (6 months) began recovering memories as well as the ability to imagine, and I wish there was one person in my life who would have treated me like the phrase you wrote. I suppose people did try to treat me like that, but they really just didn't know me.

I had a injury, my X boyfriend hit me in the head 7 times with a fireman flash light, in the back on top where Yr memory is affected, I went to the doctor, memory loss ,throw up head aches ,dizzy ness vertical ,my mind is to fast to connect for what I'm doing at the time. Inpatient, irrationally when I get irritated., loss of family and frirnds

Honestly...there's not one thing that can be said that helps or makes a TBI survivor or caregiver feel better because what one TBI survivor struggles with will not be the same across the board. However, what DOES help everyone, I believe, is this: My advice to anyone a TBI survivor or caregiver has reached out to: PLEASE do not pretend to understand and do not try to give advice according to how someone not struggling with TBI would need. TBI is complex...extremely complex. Just listen and be sensitive to their needs. Do they need to be alone? Leave them alone. Do they need a shoukder? Give it to them. Do they need distraction? Be a distraction. Be their friend. That is all

My son was extremely intelligent and prided himself with his above average problem solving ability. After his TBI, he lost all executive skills.we asked him to separate cans and vegetables that were mixed together in a box. He couldn't do it. He knew the difference between them but has no organizational skills to know how to put fruits on one side and vegetables on the other. He says it is like someone flips a switch and turns his brain off. He calls himself retarded. That kills me. I told him that all that intelligence is still there, he just lost the ability to express it. I tried to think how I could explain it in his terms. I told him it is the result of a physical injury. You had a serious car accident that you weren't expected to survive. You didn't break your arm or leg, you broke your brain! The most difficult thing a TBI person has to deal with is knowing that he will never be the person he was before the trauma. After hearing other people's stories I know that my son isn't the I only one who lost the people who were supposed to be his best friends. It hurts me so much to hear that they just want to remember him the way he was! I just want to shake them and tell to celebrate the fact that he beat all odds and survived... He's different... Not dead!!!!!

Acceptance is the key,have to accept the person you once were has left the building, and you just have to get on with 'normal' things in the only way you can now, 'uniquely' Don't be afraid to be different, who wants to be the same as everyone else. T.B.I survivor since 1992 Sharee Seymour

Here is a few I wish I heard. My reasons are beside them

I believe you have issues I cannot see...... I am tired of explaining my TBI's and what they do to me.

If you want help just ask...... Almost as bad as no help, is being suffocated with help. We need to push our limitations but as always safely. Missing a few teeth by pushing too far.

I know your not stupid or drunk..... We all had that one, your drunk/stupid etc

Well done, that was tough for you........... Bit of praise goes a long way especially in the early days

You have changed but you are still you, just a bit different than you were......... The fear of losing yourself is a base fear non survivors never understand. Just once it would have been nice to hear the truth. Better than your the same. WE KNOW WE ARE NOT, lying about it makes it worse.

What do you want to do and how can I help......... This is a hard one as you hear it said but it is not what is meant.

There are loads more but they would be a start.

I don't understand as I have never had a brain injury, but I promise to be here by your side as you take things one day at a time. You are not alone. Carole Billingham

I can't say I understand all of the struggles. But am an empathetic person. I was in a bicycle vs car collision at 14. A small fracture to my head. I remember the severe blinding headaches lasting 2 years. The memory problems and anger just cropping up out of nowhere. I am 57 now with an eventful life. I have been a caregiver 3 times so far and love and patience is the best I could ever do. Happiness comes in small moments not always big events. Grab onto them. And a hug is always appropriate just not always accepted.

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