9 Things NOT to Say to Someone with a Brain Injury

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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.

Cheaney replied on

After reading this article, I realize in my role as a caregiver to my husband I have been guilty of saying some of these things. Over the last 18 mos, My husband began acting strange (slurred speech, disappearing, irrational behavior, small fires, aggression, sudden collapsing, almost rebellious teenager behavior). Turns out a diseases was eating at his brain (the frontal lobe) and affecting all parts of the body. On December 30th, I came home from work and found him lying on the floor. Turns out he had a hematoma, one fresh on the right side and an older on the left, all due from falling. He was rushed to hospital. I stood in fear as they cut his clothes off him. On December 31st, he had his first surgery. Jan 2nd, a shunt because he was draining too much fluid in the brain. February 16th, his third. Instantly, everything we had experienced was prior was amplified. He was very aggressive, dark, fowl language, name calling, inappropriate sexual remarks, and physically aggressive. I was never struck by him but pushed and things snatched from my hand. He would tell me daily, he disliked me. He wanted a divorce. I was called a "quisling" or a trader because I had to relay all information to his parents. He began heavily self medicating. We became thousands and thousands of dollars deep in debt. His family began sending money, thousands in fact. He began pushing boundaries, social and physical. Impulse behavior. Not showering for month at a time. Wetting himself. Self medicating with weed and prescription drugs. We lost everything in our home. It got VERY toxic. I was constantly on phone with doctors, chasing him, defending myself with him (using some of these phrases) and forgot to take care of myself. In April, I left. I was incredibly patient for a long time but I realized I was the mourning the loss of my husband and best friend. I was afraid the physicality would escalate. During the separation, his behavior amplified more. I would get calls about his behavior. I was judged by friends for leaving him but no one, but his family and close friends, understood the darkness. In early June, he was in a car accident. He was told not to drive but he did what he wanted to do. It woke me up. i needed to reach and get through to him. 2 weeks later, I made him watch our wedding video. It changed everything. He didn't remember his vows. He always said that was the happiest day of his life. 10 years, we were happy. Through that, we talked and he agreed to therapy. Everyday is a challenge. I see his struggle now. I see him fighting for his Independence. I see him trying. We still have behavior issues and my marriage feels stilted due to being a caregiver. i miss the sensitive man I called my husband. But im hoping, through therapy we can reach a new normal. Until I read this and some comments, I felt no one could relate. It is a hard process and very draining. His family is currently taking a timeout, although helping financially. As hard as it is for me, I cant imagine how he must feel. He said the other day, he want to be the man he used to be. It broke my heart. To all families and friends of TBI survivors, I have nothing but empathy, compassion, and understanding. It is still early in our journey but through support, I know we are closer to discovering Our New Normal. Thanks for this article.

francine replied on

hi I am at home due to the whole covid thing and im just reading the posts. I wanted to let you know there are ways to help accelerate the healing of a brain injury! I did neurofeedback three times a week at first for about 10 months which seems like a long time but if you're going to be alive you may as well use your time wisely! by doing this as well as diligent exercise every day and very good nutrition! and a limited amount of medication. A psychologist also helps a great deal as well as a extremely supportive family. Music and equine therapy also helps a great deal!
Good luck and god bless!

Emily J. replied on

This whole neurofeedback thing... is it covered by insurance? It sounds like something my son could benefit from but we live paycheck to paycheck and can't afford expensive treatments.

Cortney replied on

I completely understate I am in the same situation with my husband he has a brain tumor and has already had brain surgery and is now about to have a second brain surgery and things have been so hard but I know he can’t help it! Stay strong my friend God will honor us for everything we have done for our loved ones!!

Cecelia replied on

I really love your article I'm going through the same. But you so strong and its hard

Faith replied on

My name is Faith. I was visiting my mom who lost her home in hurricane Michael so she evacuated and came to Louisiana. My mom missed her daughter and grand child so I surprised her by bringing my son to Louisiana to see her. I wasn’t here 24 hours and I was struck by a semi truck while I was at a stop sign. I was in a coma for over a week, several broken bones, ear about ripped off, infected hematoma, brain bleeds, etc. I was airlifted from the scene. My mom ran to me and held my head up until the paramedics got there. The doctor told her that if she wouldn’t have held my head up like she did then I would have had a lot more damage and I might not be alive right now. This accident has changed so much for me. Before the wreck, I was living life so fast. I was never satisfied with what I had, I always wanted the next best thing. This wreck has taught me a lot and how precious life is. Yes, I have been through a traumatic experience but I will not let it define who I am. Every medical person I encounter can not believe I’m not worse off. My mom asked the doctor how bad I was, and he told my mom “she’s not the best I’ve seen but she’s not the worst.” My mom asked him “what does that mean? So you’re saying out of 10 my daughter is more of a 5.” She was so irritated but who wouldn’t be. He told my mom “no, more of an 8”. Long story short, never take life for granted, because you could be here one minute and gone the next. Thank y’all for reading my story. Oh and the wreck was January 26,2019

Annie replied on

Thank you for your story. I loved reading that you will not let it define who you are, that's a substantial gift for you.
Keeping your mind active is beneficial. I was involved in a car accident during college, took one-quarter off and returned to graduate 2 years later. It was extremely difficult going through, but I'm better off years later as a result.

Barbara replied on

You can control your behaviour if you want to. Said to me 6 months after my TBI - wide spread defused Axonal damage, especially prefrontal lobe!

Jane replied on

Barbara - I feel your pain. Diffuse Axonal Shearing here (Severe Traumatic Brain Injury, July 2007). Ongoing issues. Nobody understands this. They blame us for our disability. As recently as last week, some idiot who I thought was friendly, if not a friend, said "still filterless, I see", after I opined that a TV series "looked shit". I'd told him that being filterless was a consequence of the STBI not long before. In actuality, his comment was the filterless one.

Sarah Lund replied on

When my gran had a stroke, my mum kept on telling jokes to her. I knew this was a bad idea because gran didn't understand jokes anymore. I just used to give my mum a friendly grin and quickly change the subject to something gran would still understand. I think sometimes people forget how much brain function someone has lost. Patronizing sayings always irritated me, because again, there were typical ignorant sayings, by care staff, when they talked to my gran when she lived in a nursing home, such as "Oh you'll be alright!", "So how are you today?", "You're very lucky to still be with us!".
I would roll my eyes in disdain. My gran couldn't explain how she felt from day to day. Yet the care staff where she lived, seemed to not understand this. I think nursing home staff, need to face facts, the person has lost their ability to vocalize things. They understood that gran needed obvious things like medication, food, drinks, but anyone would figure that. Just like with my aspergers, I can't vocalize very personal intimacy problems in my relationship, so because I don't know how to, I have to express this PHYSICALLY, by either walking off, or by not eating much. It truly can't be helped. We know not everything of what we do. There's not enough awareness of brain damage out there. You hear a lot about dementia and alzheimer's, but all of the TV commercials about it say the same old crap as the next one. They always show some elderly person walking with a zimmer frame, yet young people can get these brain injuries too. I just think that public media like to put us all in one box, and are age-ist.

Anonymous replied on

I am 29 years old, I got my brain injury when I was 1 in a half months old. I was born in January, and was shaken in March of 1990. my biological "father" is who shook me, he shook me in March, and did not get arrested till August.
He committed suicide while he was on "Suicide watch"

Ethel replied on

This is extremely bad. I hope that you had good help from a great therapist. If not, you still can get this help. My Daughter has a traumatic brain injury from a car accident when she was 18. Now she is 33 and in a neuro-rehab center. I hope you are alright where ever you are. I wish you the best.

teecee_b@yahoo.com replied on

it has been 8 yrs. I was hit by drunk driver on my lunch hr going back to work...I never made it back due to that day. I sometimes feel down but never suicidal. Some memories remain implanted in brain and 1 was holding my brothers hand when he shot himself and he died. It seems most of those memories that were such a negative in my life will stay yet I sometimes search for the positive ones. After injury I found other family members who I learn who I can and can't trust completely and that is sad. How do others overcome this sadness?

Glen replied on

Same here, but best friends seem to disappear.

jeff replied on

My head went thru a windshield. The police blamed my friend and I simply because we were 18yo boys. We did nothing wrong, but the police didn't even give me a ride home or put me in the ambulance

Renie replied on

Often arguments are started over things people have said to me...things I don't remember. I feel frustrated and at times fearful. Is this ever going to get better? I'm going on 3 years.

neverthesame replied on

I am going on six years and still not feeling well. In fact, Paranoia has now set in. horrible place to be. hang in there keep on putting one foot in front of the other and keep smiling. Every day when you wake up be grateful for something and same when you go to bed.

Kelly replied on

Is paranoia a normal effect of a TBI? Because it’s been 4 years since I was run over in a parking lot by a truck. And while people I should have been able to trust (court conservator) have stolen from me and stuff, I don’t know why I have an overwhelming feeling of paranoia?

Robb replied on

I still hear all of these every time I’m with the mother and sister.....35 years after the head trauma accident!!

Anthony replied on

I've heard many of these things from my (now ex) husband. The one I hated the most was "Stop feeling sorry for yourself."

Leigh replied on

I am just finally breaking through all the negative things people have told me...such as “suck it up” or “ it’s all in your head” really?!
I’ve felt so lazy, whiney, and just a bad person because I can’t be the person I know I really am!
I am in an ignorant relationship because of this TBI and am praying that somehow someday I will overcome! Bless all of you who are silently suffering and anyone who is wonderful enough to understand the difficulties of those of us who are living with TBI’s.

Carolyn replied on

I find the most frustrating thing is when I am trying to explain my severe fatigue and memory problems and the person I am talking to says, "Oh yes, I know what that's like, I get that."

Ginger replied on

my husband has a traumatic Brain Injury. we are very in tune to severe fatigue and memory problems. But i am his wife and caregiver. I encourage him to challenge himself and i certainly let him rest when he needs it. I understand trying to explain to people who dont know anything about brain injury- he seems ok but- hes not alright. So i get it.

RD replied on

I completely agree. No one understands what each individual is going through upstairs. Sometimes people have to explain the same thing to me 3 or 4 times before it actually fully computes. I feel like an idiot when that happens. They sometimes say "why are you not listening to me!?" In frustration. I say that I am but they say that I am not. It very hard to describe that feeling. So how could someone understand what I am going through? I'm sorry about what you are going through.

Janet replied on

No one really gets it unless they have had a brain injury. There is no way they can get it. So yes, it it frustrating for people to pretend to know the exact way you feel. They should say, I can only imagine how you must be feeling.

Melanie replied on

I hate that comment as well. I’m 53 and my brain tumor was removed 10 years ago. I know people start forgetting where they leave their glasses at my age. But they don’t understand what I’m saying.

Joyce Kysor replied on

Let them try living with neuro fatigue! I's chronic, debilitating & it just never ends! Only other TBI Survivors "get it".

Glenn replied on

I survived the accidents... I must now "Live with the Brain Injury and all the stuff that goes with it..."

It is not a "Stigma!" but discrimination in lack of: proper diagnosis; treatment; supports; understanding... and yes funding! Brain Injury still remains the Silent Epidemic.

We must continue to advocate for ourselves, others and those to come... those living with brain injury.

Leigh Michaelson replied on

Surviving the accident is the easiest part in my humble opinion. I pray that someday, somehow I can provide support and education to others wether they be survivors, medical providers, or family and loved ones. This is truly a silent tragic condition and more public awareness needs to be brought to the attention of the public; nationally and internationally.

mark schultheis replied on

some days I think I would have rather not lived thru but yet now I was given a second chance, time for me to give back more than ever, give others the power of how to over come a t.b.i. im going on 7 years exact date 3/16

John DeMore replied on

I was in a motor cycle accident when I was 16. I was bright charming and had dthe world by the seat of my pants and now after all these years I have finally figured it out. Its only taken 40 years for me to figure it out on my own, kind of slipped thought the cracks as far as treatment. I work 40 hours plus a week but the most simple things just sometimes just dont make sense. I have had a lot of jobs for this reason, but I keep going. My reflexes are not so good so have had some injures at work. I have a college educated family. Now I get the every day jobs. I take gabapentin 300mg and paroxetine 10mg. I went for 30 years on no meds Thanks for this web site I am grateful for this and what I have. I have been married and divorced no kids, now I just feel rejected from most. I just dont remember as much as I used to. Thanks for letting me write this, it feels good to say something to someone who understands. John DeMore

Kat parker replied on

That is amazing!!! Bless you for having to deal with this all on your own!!! I’m curious as to were you around anyone when your accident happened?
I had a motor cycle accident 3 years ago in Florida, mine was in the middle of street and as far as TBI goes I’m not sure if it was called minor or what but I do know it was critical care. I had road rash and a broken collar bone too. I had brain surgery, was in a coma (6 days) and in ICU for 8 days so there were and are plenty of ppl around me. Ppl mean well but as soon as the bones are healed and scars are covered they forget. Out of sight out of mind!! Care givers are great as long as they have a career of it, because it is so stressful for them.
Ppl that are able to stay home and do for themselves, like me, everyone looks and treats you as though you’re normal. Which in fact I am except my brain doesn’t work right or like it used to. So when I say something odd that’s when I get the strange looks, side whispers to other ppl, subject changes and all kinds of things that makes it clear to me what they think.
I tried to go back to work, tried was ten months I shouldn’t have made myself try.
Good luck to you and thank God you have ppl now!! The Shepherd enter in Atl Ga is the BOMB for ppl like us!! Just started the therapy treatments!! Two neurologist after my accident told me there was no therapy for your brain!! Funny huh?! You would think brain drs were smart right, but naw just in certain areas of the brain I guess! One could have passed for a foot dr!!
Enjoy life, that’s what life is all about for me!!!

Unknown replied on

In 2010 I had my head sliced by a broken bottle and I never went to the hospital. Years later I have memory issues, difficulty concentrating, mood swings, depression, anxiety, sometimes i can't sleep, sharp pain where i have my scar and constantly having headaches. I was in denial that this was all related to my head injury and the more I read about TBI, the more I am conscious that I have to live with this. The only thing I can do is keep pushing for a better day and pray to God that it gets better.

Barbara replied on

I slipped and fell hitting the back of head knocked unconscious. I awoke in ER. No memory of the fall or being taken by ambulance. I was told I had a TBI with multiple brain bleeds. This was six months ago. My life has been altered. Constant headaches vertigo nausea ringing in ears short term memory loss. I lost sense of smell and taste. Now I have “phantom smells”. It’s an awful smell like nothing I’ve ever smelled. It’s with me 24/7. I breath and the smell won’t go away. It’s caused my nausea to worsen and it’s hard to even eat. I stopped cooking especially anything in oven because I forget I put it in oven and I can’t smell it when it starts burning. I lost my job. I lost my car. The worst is I’m losing my family. My daughter gets agitated because she “wants me to snap out of it”. My sisters just don’t want to talk to me anymore. I’m about to be evicted. The chances of my daughter taking me in is slim. All of this is one year ago I had open heart surgery. I went into heart failure. I had a bad mitral valve that caused my lungs to fill up with fluid. I had no symptoms prior other than occasional palpitations. I was a basically healthy working 53 year old.

Now I’ve lost everything, my family, and losing hope.

I would gladly go through open heart surgery again if I could rather than what I’m going through after my TBI.

Trust me. If I could “Just Snap out of it” I would.

Melanie replied on

Not sure you will read this Barbara but I hope things have improved for you. Two close members of my family have both had very traumatic brain injuries, years apart from each other but suffer very similar symptoms. I wish more than anything that they could "snap out of it" but if only it were that easy aye? The key is to be patient (very, at times) and to ALWAYS have in the back of your mind that it is not their fault. I sometimes forget - because they both 'look' normal - but the signs are a constant reminder that their ways will never be the same and when I think about it, my heart breaks. For them, not me. I don't feel like there is enough support for those who have suffered a TBI and also I feel like there should be support for the families living with people who have suffered a TBI - because the effects are different in everyone and not black and white and with a bit of understanding, I am sure this would help people such as yourself. You are in very early stages and I am sure over time your symptoms will lessen. I have noticed a huge difference in one of my family members and his accident was 9 years ago. I really hope that your family can try to understand what you are going through and be able to support you. Don't ever lose hope :)

SANDRA replied on

THERE IS HELP THERE CALL YOUR STATE SOCIAL SERVICE OFFICE !

Lily replied on

Lol The United States Social Services is a complete joke.

Bryan replied on

I had a brain tumor removed years ago. I have problems too. Good days and bad days. Its hard to talk about it. Because you can't explain whats going on. I still have bad headaches. Learning some thing new is very hard. It just gives me headaches and frustration. But I am still here. People and friends can help sometimes. It takes time.

Onur Görkem Gürkan replied on

Well, this is how family is. Before I had a stroke I was a child prodigy, studying literature, linguistics and philosophy, I remember my mother would wake up to go to work at 7 a.m finding me in my desk, working on a paper or a study. The hour after I had my stroke people disappeared like flies taking off at the sight of motion. This is because a) they don't want to take care of you (well my mother barely took care of herself, this how losers are even when they are healthy) and your misfortune bums them down. You'd think being humans they would be all understanding. But, after my stroke I realized people are no different than wild animals, if you get injured your herd will leave you behind. We should teach our children not rely on others, even their mothers. When you are healthy people will be all over you making gestures of loyalty and love, but when you get sick they won't remember your name.

anon replied on

Hear you!

In the past new people you met were sometimes interested in doing things with you. Right? Now, after my Sepsis coma (which is similar to stroke) where are the friends?

Yes, people are like animals, you find out, just like you said. Luckily, my spouse has stayed loyal. Live far from my grown kids, one granddaughter & even they are not calling on the phone, except on rare occasion. Text w/ my daughter. That's about it. At least it's something. Yet, it's very true what you are saying:

"If you get injured, your herd will leave you behind."

"...the misfortune bums them out."

"When you are healthy people will be all over you making gestures of loyalty and love, but when you get sick they won't remember your name".

I. Forget replied on

I got my "mild" tbi in Iraq. I had suffered one earlier, (GSW), but it gave me nothing like the problems I am having now. Previous one required craniotomy, and after that, I had slight spasticity in hand opposite injury. tbi in Iraq is "whole new ballgame. I claimed disability for tbi. (They categorized it as a mild tbi) (I don't think there is such a thing) I was awarded 10%. If any of my fellow veterans read this, try to claim for each problem you are having subsequent to tbi. And the list keeps growing as time passes!! Reading some of the other comments here are familiar. As I told a friend with a tbi, "When you have a brain injury, it changes the way other people think." One other comment here reminds me of the way I feel about the injury is that it took away my{previous) life, and left me to deal with my new one. Hardly worth the swap.

B replied on

Hi,I was hit by a drunk driver at 14 , got bounced of the top of a lamppost landed head on the curb,comma for two months learned to read write and talk again.Had several bad injuries told by three Doctors would not walk again, took
Me seventeen months to walk of a fashion and another five years to prove them wrong,I did lose three years of memories.
But this is my point am now fifty four and have only just spoke out , about how I feel it’s been like an embarrassing secret to protect , like am an imposter a different person, a feeling of loss for the young boy left half dead at the side of the road, a life am living what am not entitled to , it sits with me every day at times I wish at not pulled through,I’ve lived a good life and been a kind person,
Well that my burden spoke out about, only to say it’s true people can’t understand us , and it does upset me to read the comments and life stories on here , I can only wish all of you come to some positive acceptance and balence with your lives ,funny how many of us go the sleep with the tv or radio on,thanks for taking time to read this .kind Regards B

Teresa replied on

I am so sorry for the tragedies you’ve gone through. I do not have a TBI, but I do suffer from depression and have been told to be asically “snap out of it”, so I understand a little of what you’re feeling. My mom would tell me to “just make yourself feel better” and “count your blessings”. Though well-intentioned, that just added to my feelings of guilt and despair. I wish your family understood what you are going through. There’s no way to explain it to someone who hasn’t experienced it. Do you have a church family or a support group you can reach out to? Don’t try to face this alone. If your family isn’t receptive, find someone who is. Maybe your doctor can recommend somewhere/someone that could serve as the support system you need right now. Advocate for yourself. Keep searching until you find the people and program that will help you get through this. Remember, it won’t always be like this. This is a temporary journey you are going through, and afterwards things will be better. Never lose hope.

links replied on

I do not suffer from tbi, but my husband does. He doesn't cope good with stress of any kind and makes him irritable and mad. Can anyone tell me what I can do to help him?

Michele replied on

I would like to offer you some hope. I have learned how to live my life after suffering a near-death head trauma in a car accident when I was 18 1/2 years old. My brain was very swollen, I was unconscious. Due to new medical procedures at the time, 1981, I was kept unconscious until my brain had returned to normal size. I had to relearn everything, as many people have also shared. Anger, frustration, and other emotions were easy for me to use to cope with everything I was relearning. So, with cognitive, emotional, and physical therapy, and a patient family and circle of friends, I made steps to recovery. Now very few know my struggles, but I needed to have a reliable schedule, and an organized life so I knew where everything is. So offer your skills of reliability, organization, patience and love, it makes a very big difference. Stay strong

Alexa R replied on

In my personal experience, it's not the stress per se that angered me. It's that the brain no longer functions as it used to when experiencing stressful situations and when trying to connect dots and process received information. At first, I tried ignoring that I have brain injury which did not help at all. Then I spent a long time trying to find ways to cope with it. For me, I found it helpful to gradually re-learn how to deal with stress, understand that I've changed and slowly re-adapt. When I e.g. don't feel like dealing with something at the moment, I leave it for a while and do something else before I take it up again. Also do I try to identify what kind of situations make me stressed and what it is about them that makes me stressed, and I try to avoid them until I'm better and/or I've had time to process them and they no longer stress me.

Also do I sometimes stop and give myself a moment to process something that I've read or something that somebody has said. If they ask me why I'm looking non-understanding, I will admit that it's bcz I'm processing the info. I expect that ppl will understand since it's not a problem that I can help having.

I also found that relaxational activities and/or physical activities, of a kind that allow for stress-release without causing stress or damage and without placing any demands on me, were helpful.

For the loved ones, it's sometimes extra difficult bcz they take the anger and irritation personally even though it's not aimed at them. It made me sad that my loved ones thought that I was angry at them when I lost my temper at somebody who is trying to be supportive. It's imo not bad to remind the person with the brain injury that one is aware that it's not aimed at oneself.

Since being mad and irritable imo causes more damage to an already-injured brain, it's a good thing to try to avoid that. I personally think that unfortunately must one do a lot of the work oneself and that the best support loved ones can offer is to not be judgemental, to not take anger and irritation personally and to offer relaxational activities and activities that allow for stress-release without placing any demands; to be a partner and a friend, at least in my experience.

I hope that it will help and I wish you the best of luck.

Cheryl replied on

My daughter was in a car accident three years ago and she's recovering from TBI. In the beginning she was very frustrated and would get angry easily, our state passed medical marijuana shortly after her accident so I got her licensed and it has helped tremendously in controlling the anger associated with the symptoms of TBI. There is also CBD. It's becoming widely recognized in treating many disorders and treatment for pain as well. Hope this helps and God Bless you and your husband.

Judy replied on

I had 2 strokes last year. Realize my husband is tired of me not being able to do like I used to. but I am trying to recover. Lots of trouble thinking straight.
But being called names and being told I am lazy does not help. It makes me more depressed and angry. I try to do my own housework, but can't climb on a stool yet or lift heavy things. I can't get out and work in the yard like I used to but I try. Need to talk to someone who understands so I know what to do.

May replied on

Oh wow, this whole article rings so true to me. I’m glad I found it. I got my ABI at the end of last year. What gets me the most is that mine is an invisible injury, I don’t have a major scar on my face/head just a couple tiny hidden ones. It sounds ridiculous and I should be thankful (and I am!) that I didn’t need surgery on it so I don’t have an obvious scar. But sometimes I think how life would be so much easier if my jaw scar was moved higher up my head. Cause then people would understand better why I’m like I am. And they wouldn’t just assume that I’m being lazy or stupid or purposely difficult, Even the ones that actually know of my accident and resulting injuries! I have the most difficulties with my mood, memory and fatigue. Which just gets in the way of my life and others lives. Then you get the “stop being so lazy” or the “You know you should try culling or cutting your medications, you might get better if you just think positive and eat healthy instead.” (I do eat healthy, I’m a vegetarian you kinda have to eat healthy!) You try and think positive thoughts when your struggling with depression and self harm! And nothing but time and prompts will help my memory especially considering that part of my brain is one of the areas that got the most damage.

Sarah replied on

I totally agree with you. I got a TBI from a stroke I got when i was 11, but i realized that trying to be happy with what you have has made it clear to me that what other people think of you is not important. This does not define you not in the least. I don't know about you, but what helps me the most is reading Bible verses.

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