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 (114)

I think that having been so independent and bright, people forget that I may no longer be quite up to that level anymore. It would be so nice to know your accepted for who you are now, not who they remember you to be. You see, some of us with TBI may remember how we were and are reminded every second of the day that we are no longer that way and fight to accept that for ourselves and support would be so welcomed.

I have a complex TBI situation, complicated by 20 years of amnesia and misdiagnosis. I had a nervous breakdown. I was without any support and over 60. But I am the only person who can own my reality. I have fought to get the help I needed. No, I won't EVER be who I once was. But I did get cognitive therapy. I got help anywhere I could find it. I still do. I have to. What I can do now after 5 or 6 years of KNOWING and owning this is amazing... sometimes. I have a great TBI therapist and a few friendships. I have 2 doctors that are good. What makes them good is they HEAR me. They know me and see who I was and how far I have come. I WORK at everything I have trouble with, which is pretty much everything sometimes. But that is my responsibility. FATIGUE is my greatest enemy. I want to work harder at problems when what I need is rest. I have helpers who remind me to eat, to not forget meds, to make myself a priority and accept myself as I am. I have been on a long upward path but I overextended myself and crashed after a year and half of progress. I was afraid. Maybe I wouldn't ever get consistently better. But I will. I can. I am back rereading everything and making sure I take care of me. I don't like getting frustrated and angry, but I do recently. "It's the past. Let it go." Or " you're so intelligent but that was a silly thing to say, think, do....". Yes, I can do somethings fairly well. But some parts of my brain are so broken that no matter how hard I work on them, they will never be more than 5 years old, if I am lucky. That said, I WILL NEVER QUIT WORKING MY BRAIN TO GROW. It does. I don't necessarily get to control how or where or when. I do get to CHOOSE to do my best and use every technique and tool I have learned to improve. I do use adaptations, too. I USE EVERYTHING I CAN FIND. What I don't do, is let people manipulate me or disrespect me, or try to make me a good handicapped person. I am a person in process. AND IF I CAN DO THIS, I believe anyone can improve their situation with help. And quite frankly, anyone that is bad for my mental health, is bad for me. I don't have to meet any unrealistic expectations. I simply need to be the best ME I can be. So can YOU! We do need more resources, especially as adults. But we can do more than we think. Let people help you and encourage you. Jettison those who don't. Believe IN YOURSELF! And may you all, those withTBI and those really trying to help you, find the guiding light that is just right FOR YOU!

I have had A TBI for about ten years. Most comments about it hurt rather then help for myself. Maybe attempt to disregard it. Let smaller things slide or just assimilate with the person if I am saying that proper.

I appreciate your post. My husband had a TBI in 2014. he does not like to talk period. He like to talk about his feelings even less. I love him so much. I am grateful every day that he lived. He is angry and often says mean and hurtful things. He does not realize or remember these outbursts. I do not know how to handle this anymore. I do not argue with him. I just try patience and listening. Inside I feel like I am slowly dying.

Wow, I have the same experience with my wife except she does like to talk, but sometimes just makes up stories that I know are not true. I love her so much too and am grateful that she lived. She also says some horribly mean things and then apologizes when I tell her about it soon after. She used to deny saying those things so I think it's progress. I am having a difficult time and do not argue or ever say anything hurtful back, only kind words. I also feel like I am slowly dying from this difficult time.

I know it is difficult for care givers. Know it’s hard on my wife. I don’t like to talk and listen even more. It’s work for us and just something else in the list that we don’t like. We don’t do it on purpose. It’s how we are wired now. We do care and appreciate u all trying and being patient. My marriage has suffered. She feels alone. It’s just not in me to b there all the time. I like my quiet time and to b alone. It’s not by choice. That’s just how it is. Brain avoids a lot of situations. Unfortunately relationships require work which we r not up to sometime. Idk if this helps. My wife got a dog. Guess it her theropy animal. It helps her.

My husband just recently has a TBI too, he has been out of work for a month now. It is painful to see him suffering and not knowing how to comfort him sometimes. He is trying different anti-depressants to see what will work on him but switching meds has been a very difficult ordeal for him and for me. I'm hoping to find some support group as there's only the 2 of us. We don't really have friends and family is far from us. I do not know what to do.

I am sorry for how you are feeling, I completely understand. I have a tbi and my husband does everything. I have had mine for a little over a year. It is only us no family not many friends any more. I have tried many antidepressants also. I find 300 MG Wellbutrin has worked best for me. Walking just 15 min a day is a help. I know it is hard but it does help. I also find that tumeric, fish oil and b complex helps. I take ones that are high quality. You can research on amazon. Brain games help also. I drink plenty of water and eat high quality veggies and fruits, limet the meat and dairy. Salmon and some chicken are good options. You may want to research Functunal neurologist. They are very expensive and don't take insurance. If you can afford it, good option. I have to limet my activities rest and take naps. If I overdo it I feel as though I have the flu for the next several days. I hope this helps you and anyone else that reads this post. If you have questions reply and I will be sure to check back on this site.
Stay positive and keep your head up.

You should go to a support group. My brother has a brain injury and he has outbursts frequently, but he always apologizes shortly after.

Dealing with the stress that a TBI puts on you, is there a way I could accompany/take sessions that would help alleviate your burden and help me understand more?

I know that you have a brain injury but sure you are fine now

A good friend told me this. "You used to be brilliant. It must be hard to be average now." I felt like at last someone understands!! This wasn't mean it was true and real and I was having a hard time adjusting. Here was finally understanding, compassion and friendship.

I feel the pain and frustration from the tbi stories I'm reading. I'm a caregiver and wife of a very wonderful man.he had an anoxic tbi in 2009.I truly believe that you make sure you keep things as normal as possible like they were before. We've been doing this for 9 years.and honestly my husband has problems with all daily activities. He is totally dependant but that has Never changed how our family see's him.we take him out to movies ,ball games our county fair, music events.all in a wheelchair. He's very alert but doesn't talk now but he uses his facial expressions to talk.And that's great.cause we all understand exactly what
He's telling us.I Really wish and pray that there were more resources for ANYONE that develops a TBI... like rehab , more music and ways of art for you all to be able to express yourself. I WANT YOU ALL TO KNOW I BELIEVE IN EACH OF YOU AND I PRAY WE ALL COULD BRING MORE ATTENTION TO
BRAIN INJURYS...
To our people in local government and eventually the senate. Lots of love

Do you need some time to yourself?

I see you walking everyday, I know exercising is not only good for the body; but, it is also good for the brain. Can I walk with you?

Maria, I wish you were here in Bend! I wish I had someone to walk with. I was out this afternoon and at times wasn't feeling very safe because I was alone. What if I fell? But I can't worry about that ... I just need to get out.

You know, all we can do by ourself is the best we can do... EVERY DAY. It's hard isn't it?!?!

You are a lucky man... you have your wife, she is supporting you! WOW, that says a lot about her. As I'm sure you know, that is exceptional! Great for you!

I feel your pain... she deserves an unrestricted life also! By giving your continued solidarity (not feeling or giving retribution) she knows your true love because you show appreciation! I'd love to talk one-on-one or with a group as I am a survivor also. Dawn at Health South has helped so much but it is up to us to do the right thing and the best we can! Let's feel good about ourselves and happy! If there is anything I can do... Make it a great day! Randy

Get CBD oil. It will heal your brain.

What's cbd oil?

"Derived from the stalk and seed of cannabis (hemp) plants, cannabidiol (CBD) oil or CBD hemp oil is a natural botanical concentrate that is high in the compound CBD. ... Pure CBD hemp oil is extracted from the cannabis varieties that are naturally abundant in CBD, and low in THC". CBD oil does not provide a high and is meant to be relaxing, you can apply a drop of it on the back of your neck and it will take into to effect in as little as 60 seconds.

I know how you feel. It tears me up to read your story. Hard to explain a tbi to someone that has not lived it. Never give up. Keep your loved ones close.

“I know how you feel.” No, you don’t. Nobody knows how another person feels, especially if you have not experienced brain injury. Even if you have, your experiences would be different. Making this kind of comment discounts what a person is going through. Instead try something like this, “I cannot imagine how you feel.”

In the year 2003 I awoke after a crash in University Hospital to a wonderful loving wife, unfortunately, TBI came with the awakening. Now, after the years have gone by, TBI never goes away, and the symptoms from it have caused a strain on my wife's life too. I wish it was easier after all this time, but it isn't, I am certainly glad to still be here, but in what content, so many things do not compute, I wish I could fix myself, and be the person I used to be. Where to turn to help my wife's life be better and me stay in it too?? I have met so many people who desperately need help, but society seems to only go so far, is there someplace where we both could be helped,..I realize I cannot be the person I WAS, but maybe understand and deal with things enough to be the loving husband I used to be and for my wife, she could understand and cope too, she deserves a happier life as well. Thank you Very Much.

Getting extremely upset when asked the same question constantly, but on different days.

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. I saw the above comment and had to add. I get stuck in a loop all the time. As a matter of fact that's exactly the word I use to describe it. My poor husband takes the brunt of it and I don't know how to stop it. I see 3 different doctors now. I'm over 3 years POST TBI and I am straining our relationship. How do you stop the loop??

i dont know how to stop it but you are not alone!! just letting you know!! it sucks!!

My ex husband was a very violent and abusive man. He had head on brain injury due to an accident in a swimming pool during his teenage years. His personality greatly changed after that. I wonder... Are all reckless behavior by TBI patient purely unintentional? Does he know that he is reckless and impulsive?

One of the things my family was warned of before I got home was not to ever leave me alone because I would not be able to recognize when I was not being safe. I think that goes with the territory. But not necessarily. We differ, each one of us. I I know I have done things that I recognized was reckless even when explained to me. In fact, by trying to explain it to me I got angry. I felt like they were over exaggeration to make me feel bad. The problem is that the brain does not necessarily recognize its deficiencies. It can be in denial. prayers go out to you and your family.

There are several posts expressing a need for connection and understanding. If anyone whose friends aren't there right now wants to reach out, I would be so happy to connect with you. Even if its just email, I'd love to just talk. My name is Ross. I am a student at Arizona State University. My email is recarlto@asu.edu   

I know this is kind of weird and out there, but please don't be afraid to reach out.

When I ask for help or accompaniment for a seemingly simple task or walk to the store it would be nice to have that person say sure ok lets go rather than a selfish un-understanding no or brush off reaction as that is infuriating. Like its not embarrassing enough to need assistance for basic ass shit. Add a mental breakdown and full on embarrassment ensues.

Nobody understands me anymore. This is my third TBI. I am fifty two. One of my kids messages me this big note and I can't understand it. Other then I have been disowned. I ca not communicating back because garner mistakes get me in trouble. Everyone laughs. I me if I get a word wrong. One relative keeps saying when are you going to get better, then it all turn religious and stressful. I just wan to kill my self. I even had years of psychology treatment. I am so tired of insurance adjuster on my case bugging me. Now I have a new neurologist that is against the seizures drug I am taking I was about to walk out of the office. He didn't hear anty of my thing about the head ach after rolling a SUV no nun of that matters. All that mattered was that the drug I was taking causes weight loss and that was why I w "claiming" to be epileptic. OM fingers G. This was not my first seizure. Where are these doctors getting their licences. And that is only the frozen water droplet of the iceberg of the shit I have been going through scince 2006

Keep your head up and never give up.There are still many people who care and know your exact pain and suffering.Guardian angels are looking over you has I type.I know without a doubt that your entire terrible situation is fixing to change for the better.Godbless.

You're never going to get well, you're now marked as crazy and people will take advantage of you and manipulate you for the rest of your life.  Nobody will ever give a crap about you, so go find a desolate place and hide for the rest of your miserable life.  This is just an honest truth.  Don't ever get your hopes up.

I'm so glad these comments are here. My son suffered from TBI, it's been 8 years and he's still trying to find ways to live a normal life day by day

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.

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

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.

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 :)

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.

https://vimeo.com/channels/novavision/41094802

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

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.

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

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