9 Things NOT to Say to Someone with a Brain Injury

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That woman that said f you when people told her she was too negative, what I do is look them right in the face and say in my deepest meanest voice....YOU DON'T TELL ME....still saying that almost 13 years into TBI. Try that one sometime

I had a bad car crash 2 years ago. In fact, with in 5 months, I lost my husband, my mother, then I had the crash. I swear to Gawd, if one more person says Im too negative, or gosh, your such a strong girl, Im going to bash their face in. Since the first death, I am totally alone. no family, and no friends. The few friends I had, did come to the hospital after they saw the news, are no longer my friends. I guess they weren't friends after all. They think I'm too negative or I  complain.  One person said, I bring them down. I just said.....F YOU.

Will share nine things not to say with my TBI support group .About 12 of us meet once a month.Fellow survivors injured much more than myself have saved me.IV lost friends and family from my TBI. In turn a new set of friends has presented it self to me.I'm a bus rider now.First time in 30 years.The bus is full of people working through disabilities.A lot of experiance and wisdom on a city bus. Terrifying at first now I get comfort and social time on the bus.

My girlfriend says 7 of the 9 things to me almost every day. I am so fed up with this bullshit I want to leave her. But I don't want to give up. Any advice on how to deal with this would be appreciated.

So Sorry for what all the people with TBI are going trough. I understand 100%. March of 08 I was assaulted by a convicted murder while working as a correction officer in a prison.I had lots of broken bones and 4 surgery's to fix knee and wrist issues. I was having awful headaches and not remembering even the smallest things. It took 10 months after the assault for a doctor to figure out I had TBI. I struggle everyday with putting my thoughts in order and with remembering to do things and go places. I can be on my way to some place and while going forget what it is I am doing or where I am going. I have had 3 great friends stick by my side all the way and I know it has to be hard on them too. I am not always easy to get along with. I lash out and lose my temper at the drop of a hat at times and I have been told I can say some pretty mean things. I don't I don't like being that way and I wish I had more control of myself. I know I am blessed to have them in my life still but a lot of the time I feel like I would have been better off if he would have just finished what he started. It's hell living this way.

May 17 2008, fell 11 feet off roof area , broke my fall with my forehead on a concrete brick wall. Fractured C5, not diagnosed till few years later, head off centered on atlas /axis not diagnosed till later. Lost my career as a nurse. Family as in siblings, only 1 helped out of 6 siblings.  I have frontal lobe, parietal , occiptal and other lobe issues.  They distance themselves from me cause they say... I am crazy.   They expect me to do more as to what they expect but don't even know my limitations as with executive functioning, visual perceptions, language cognitive impariements, personality change, i dont' even taste salt anymore,  etc.  They think I don't try hard?  I say, i fell 11 feet broke my fall with my forehead, adn you think i am the same?  I know I am not.  Thank heavens for sites like this, at least hopefully when I send it maybe they will stop being so ignorant and read something.  A TBI can happen in a second.  Life can change in a second. 

I had a major stroke 14 years ago and an ischemic stroke 8 months ago. I made so much progress and now it feels like I'm back at the starting line. To all the care-givers who are suffering because of a loved one's TBI, I just want to say that your hurts are real, too. You're allowed to be angry and frustrated and you are allowed to walk away if that relationship is breaking you. Just please, before you do, find some support. Find someone to talk to who can understand how painful your own journey is. I know I lean hard on my loved ones, and I know I wear them out, but not everyone with a TBI is capable of that insight. Nothing about this is straight-forward, and I admire the courage of spirit it takes to try, 

I am so very glad I found this and I will be sharing it. I have a loved one who means the world to me. We met about two years after he was injured, and he was always very upfront about everything, but I don't think I fully grasped the continual effect on his everyday life until recently. I have been around brain injuries before and knew the main things, but I want know how to support him and what I can do to be there for him into the future. I often will say, "I already told you about that" or "stop mumbling, I can't understand you" and this makes that clear to me now. Thank you so very much for posting this article.

Almost 3 yrs ago July 8th 2011 I was in a motorcycle wreck , I was flown to Oaklawn IL. where I laid in a coma for 2 months and now have some major brain injury in the front left lobe. In the last 3 yrs Ive lost most my Friends / family and have repeatedly been denied disability. This page descibes my life to a T. I wish everyone could and would read this pg so I might get some understanding. I need help and I know it , know it is worse than needing it.:(

I am three years out from a huge stroke and I get people asking me why I need to rest all the time and that I should try harder and exercise more. I'm doing the best that I can!!!

I had my brain injury 14 years ago & can't do thing's the same way or speed as other people. I NEVER GIVE UP, so many people expected & 2 wanted me to give up. But i never did & it will always be hard as few people understand.

Confabulation. Thank you. I'm a boyfriend to a TBI survivor. Confabulation is a major factor. Thank you again.

oh my gosh this website makes me feel so much better I realize just how lucky I am to only suffer as much as I do thank you all for your contributions its been enlightening

I would like to mention the 10th, the very worst is "Do you remember when?"

When ever my wife talks to family members, they always say that. She will lie, and just go with it, but soon she will ask me to go home. Please, let everyone know that this is the worst a person can go through. My wife didn't even know me when she came out of her coma. The doctor's said she would never be able to come home. I fought tooth and nail to get her home, I did. It was not easy, but what can I say. Yes, the intimacy has gone, but maybe with some work it may come back, I hope. She is so beautiful to me.

I have one question WHERE IS THE AFTER CARE my adult son suffered a TBI 7 years ago and after spending a year in hospital and rehab facility he was sent home and for the last 6 years I have been his primary caregiver but don't tell him because he thinks he is the same, "well he knows he has a little problem with memory but that's all".....  Believe me he's different you don't take out most of someone's right frontal lobe and part of their left and and not get a changed person.  I deal with anger for no reason, forgetting what he has just doing sometime I can tell him the same thing 3 or 4 times a day and he will forget sometimes just minutes later.  He would not take a bath or shave or do any of the things to take care of himself if I was not here but again don't tell him that because he believes he would do just fine  haha, I could go on all day about what makes him not the same man he was before but the one that worries me the most is his confabulation if you don't know what it is google it) he tells stories all day long some of them quit fantastic but none of them true and I don't mean he tells one or two a day I mean he talks none stop all day long and at least 75 percent is not based in reality, if he thinks it it becomes the truth and people think it's funny but believe me it' not he has stop the police on 2 different occasions and told them that some one has committed a crime even named the person and the crime never took place.  I have tried to get his neurologist to send him to a neuropsychologist but he just says oh he's doing great just "look" at him ( I know the Dr does not think it is really none stop all day long but it is, I know where the saying "if his lip's are moving he's lying" comes).  Back to my original question where is the after care that teaches us how to respond, when to respond and when to just ignore a behavior.  I know what to do when he has a seizure but what effects does it have on someone when they live a complete fantasy world, I don't know maybe nothing but my point is I DON'T KNOW.  and now that I have that out of my system I can get back to my day............ ps to everyone out there caring for someone with a TBI bless you, a lot of them don't thank you they don't even believe you do anything all that great they can't they truly can't, those who can do, but some can't see it especially those with a fontal lobe injury.  If they had a broken back they would thank you profusely but they have broken awareness.  I know it has been easier for me because my relationship with my son did not change all that much, I was his mom before and I am still his mom but for a spouse a life partner going from partner to caregiver is another conundrum.  Bless all that have TBI's and all who cares for some who does.

I'm really sorry that you're going through this - can you talk to anyone to offload - you feel like you're moaning but you do feel better afterwards and better able to cope x My husband has a brain tumour - I've been looking after him for years - some v bad times and others pretty normal , what helps me is humour - last night i got a bit pissed with him - he reacted, and I said What do you think I am the Arch Angel Gabriel ? Yes he said - we giggled This am - I've got my glasses Me - that's great , we're you looking for them? Him - I don't know ! What else can you do but laugh together xx

Those with TBI's are thankful for help from family members & friends. If the ones who are close to the patient feel overwhelmed or over worked the patient is not using you he or she is incapable of doing the task. Your acts of kindness may not be able to be recalled by the patient. The TBI victim knows that you have helped them but is incapable of recalling in detail what has been done or when. This lack of recollection is very aggravating for the patient because they know at one time they were able to complete the task, how to do it, & which steps to do it in. Picking up from where they have left off on a task can be very difficult whether it's 2 hrs later or 2 days later. Planning note taking & recording completed tasks is highly important. Lack of sleep can drastically effect memory, attitude, aggression, anxiety, depression & or train of thought. TBI patients require a minimum of 10-12hrs of sleep per night. & possibly a 1-1.5 hr nap during the day. Your brain is a muscle, with a TBI it is having to work twice as hard to do ordinary tasks for those not suffering an injury such as this. Imagine doing squats at the gym with high intensity, the next day it feels impossible to walk & the following day is extraordinarily more difficult. That's from less then 1 hr if working out on one particular muscle group, whereas the brain being a muscle controlling all of your muscles, thoughts, taste, sight, smell, hearing, feeling at once. This can be overwhelming, exhaustive & irritating for the patient. Getting up to fail multiple times a day for TBI patients can become hopeless. As a normal functioning human being you have it pretty easy in comparison to a TBI patient. Be thankful for your capabilities to complete everyday tasks or even to be capable to walk, talk, or recall.

I understand those who are with someone who has a TBI and the frustration that goes with it. I am personally running out of compassion, care and concern. I guess you could say I am burned out. I try to help in every way I can. When he has the children I do EVERYTHING. It feels like it is expected and when I want to talk about things all I get is a defensive, angry person - denying, lying, saying whatever so he doesn't have to see what I do. All I read is what we are suppose to do for them. How we are suppose to act towards them. How we are suppose to understand they can't feel this or that. Do the tbi people know how hard it is for us? Or do they even care? It is heartbreaking that anyone has to experience a tbi - but for those of us who love them and try our hardest to make their life a better one ..... It's harder than anyone can imagine. It's thankless. 

On April 2 2002 I flew out of a car window after the rear passanger tire exploded the car went into the grass median which had a dip and the car went airborne the driver ended up in the trunk and I went flying out the window and flew 35 feet and needed my right ear really attached again after the shoulder harness almost removed it April 2 till may 25th I was in York hospital. Coma for 10 days and I just recently really lived the whole thing in a nightmare. My life sucks now, but at least people love me for who I am. Nate Watts

I have a TBI from a car crash 7 years ago. Emotional problems dealing with the memories of everything that has happened to me has been my number one issue. I am shaking as I write this as I very rarely open up and let people know of what I've gone through. The car crash happened when I was in high school and during a year in college, I let someone know that I have a brain injury. It backfired as this person called me retarded. A college educated person was ignorant enough not to recognize how far I had come from the TBI to succeed through college and this person didn't understand the harsh and overused word of "retard". Has something similar ever happened to someone else?

People with TBI need understanding especially in school. Most of us have lost enough, much less our careers . If we are lucky enough to go to school we need to try 10x harder and still underachieve, we need assistance for free. Most if all we need true compassion and patients, as well as thinking outside the box if being very understanding. If you have not berm there please don't pass judgement, I hear you " I could koals if I had twice the time. I have to re-learn addition everyday. You try it. Love this post it does give me hope I'm almost done rs

What do we do now

I have TBI. I say things to people I don't remember saying and I think I've said something to someone but didn't.  Does anyone else do this?

I have lived with my husband with an ABI for 16 years.  Apparently I say and do every thing wrong.  I am really tired of always being wrong.  I have tried to respect his ABI and capacities and we have kept running our farm for these 16 years.  I am not appreciated and have no sense that he acknowledges that I have feelings or emotions.  He is totally self absorbed.  He is now taking a separation from me to allow his head to recover as he is convinced that he is losing his sanity and it is all my fault.  He says he cannot establish a routine or  do the meditation and alike if I am in the house.  He is very irritated by whatever I say or do.  He has a list of my major stuff ups over the past 16 years which he trots out as proof of how awful I am.  Sometimes I respond and  I get angry too.  He has recently been diagnosed with bipolar with manic episodes. So why do I feel like shit, I have raised two sons successfully.  He goes around and tells whoever that his marriage is a disaster and I am a terrible person. I am not perfect and I do respond when goaded incessantly.   I have had it with people that tell me how lucky I am, how well he is, and that there is no sign of any damage - why don't they walk a mile in my shoes and acknowledge to me the wife of a man without a left frontal lobe and major damage to his right frontal lobe that I am OK and yes he is a bit odd.

The comment today on Oct 13th, I also really like. I feel that all the time with people. Trying to compare there everyday issues with TBI person. It's demeaning.
It's a horrible feeling. FOR EXAMPLE:
I don't go to someone with, say, cancer, and say to them, "oh, you feel sick? Well  I feel sick all the time too". Makes me feel awful to even think to say that. I do not understand what a cancer patient is actually going through so instead I would say " WOW, that must be tough. Your a strong person dealing with all that, and I can never understand what it is actually like unless I am going through it also. I get nasuea as part of my TBI but it is very different than in your case."
This way they do not feel you are comparing your own issues with theres to make them feel like they do not have that big of a sickness. Love all these posts and comments. They are very helpful.


Also, Do not compare your ieveryday ssues to a suffering TBI person issues, as if you have the same. It makes them feel like you pass off there problems as to say everyone has what they have. Feel hurtful and leads to depression when us suffering from TBI KNOW what we were before we had it and what we are after. It is NOT the same issues as other people or in the same way. So try not to tell a TBI patient, 'Oh ya, I have headaces all the time too" or "I have memory loss too", just try and be understanding that, these issues are EXTREME and it can really hurt our spirit for someone to pass our issues off as if it is nothing. Listen and stop talking aabout yourself nd taking over what a TBI person has and has to say and it will help them heal inside and out.

My boyfriend has a tbi and received it before we started dating.  He shared his injury with me right away.  I admit I had no idea what this really meant and just how his tbi affects his life.  I have read so much and gone to his doctors that now I fully understand there are things he does and says that he can't always control.   It isn't easy to remember he may be saying things without knowing how it sounds.  He can get angry very easy and focus on negativity a lot.  This site is giving me comfort that I am not alone. 

To all the people who say a person chooses to be angry, happy, sad, should try having a brain injury.

I had a very horrific brain injury. Around 17 years ago. I still have many problems. I cope pretty well. I have very bad sorry term memory problems. I really try to be very positive. Rather than dwell in sorrow Or discontent. I'm in control of my destiny if I want something I try to make it happen. I have ptsd and anger issues when confused or upset.

Please know that your are here for a purpose!! God loves so much, know that he has a plan for your life. DON'T! give up...Maybe it's to teach others how to understand people living with brain injuries...I'm not sure but God will lead you in the right direction, that I do know. Be encouraged, I can tell your a fighter because your still here! Your are courageous and wonderfully made!! Get excited about life and make your mark in this world...YOU can do it, it's already in you!!!!

I was a infant when I fell and had a brain injury.

When I started school  my mother told me to never tell anyone or they will say I am stupid.it did not  matter,my siblings would pin me down and show everyone the scare on the back of my head ,then say she is stupid,her brains fell out.

When I went to middle school my mother say never to tell the teachers or they will take you out of school and on one is at home to take care of you.

By grad three teachers knew some thing was wrong ,they said a learning disability.

This was   1969. support for my b/i was not Cleary understood at the times.

Funny how the support staff would go out side to smoke dubies all day long but was frustrated be me not being able to understand the process of math rules.

I am 52 now. And have had only customer  service work most of my life.

Now I am dealing with age discrimination .

Cant even get considered for a job as a night stocker at walmart.

Ontario works treats me like I am not trying hard enough.

I have worked all my life ,now I ha even begin for welfare.

I should just kill myself and stop the humiliation.

Jolene here…….1994 head-on collision in a full-size conversion van with no airbag deployment.  I blacked-out but came to, still buckled in, with rescue workers working on getting me out.  No one suggested during emergency treatment or during follow-up in the next 2 weeks that I may have suffered anything involving my brain – even tho I was in a constant state of “fog” (kinda like when you get up in the a.m. but not quite awake).  It was only after it took me 2 days to remember that 8 and 5 equals 13 that I knew something was seriously wrong.  I still can’t do math without having a calculator to check my answers.  Along with several physical injuries from which to recover, it seems the aphasia was the most difficult to deal with.  Back then blonde jokes were big so I went brunette to avoid the automatic “blonde assumption” thrown at me. The worst thing I heard was “There’s no such thing as a head injury.  If you’d just handle your stress better you wouldn’t have a problem”.  I had to give up my real estate biz.  It was devastating to wonder “will I ever be smart again?”.  The neuropsych test established my IQ at 135.  I didn’t know what that meant – just knew it was good to have 3 numbers (always wondered what it was before the accident)! Years later, an argument between Frasier Crane and his brother Miles about IQ test results helped me realize I’m not stupid (go figure)!  That epiphany empowered me to move forward like never before and I haven’t stopped since.  For  all those out there that just don’t know if you can…….its been 20 years for me and I can tell you…..NEVER GIVE UP – NEVER SURRENDER…….Just keep swimming……Just keep swimming….(I love Dorie!). Our brains are capable of amazing things. By the way, I am in a good, committed relationship for the first time since then and He understands much more now because of all these stories (lights, noise, organization, etc).  I no longer feel secluded after sharing this with him. Wishing you Inner Peace and Love.

I think a major one was missed from this list and perhaps should be added in as the 10th item for the top 10 things not to say instead of 9.  That is, "I didn't realize you were so sick."  Or, someone trying to come to my defense by saying, "Don't pay any attention to them, they just don't understand your illness or they just don't understand how sick you are."  I'm not sick.  I'm injured.  There's a vast difference between illness and injury; specifically TBI.  Please stop telling me I'm just sick as if I'll get over soon.

i am reading this and it saddens me i wento hospital 8 yrs ago and came out in a wheelchair a year later i was such an indpendt lady@ that time @ my partner@ the time was working in u.k. and i was working in i.e now its all changed i do accept it :times but my p.a.are a lazy bunch one shrunk all my clothes u know the drawer of the washing machine i mentioned to her todsay and she replied i only here for personal care and making u a cup of tea which i can make better myself is it the same in u.s. are we backward here in i.e. just give me ur honest thought please talk soon mags

My friend with a TBI sent this to me, and for that I am grateful. I admit saying at times some of the forbiddens on this list, and see that it is counterproductive to communication to do so.

My question has to do with the irascibility leading to an implied accusation (or sometimes its even outright). Is it too much to expect an apology in relative short order, or is it just as likely that her memory of the gone south conversation won't coincide with mine enough to make it meaningful to me, or that she may forget it even occurred? This is an ongoing problem that I'm sure others have too.

Yes! I'm a young adult with TBI, and I've read this article. I hate to say "all", so I will say, a majority of this text is true. I've never found anything on the internet that was precise with Traumatic Brain Injury, until now. After I post this comment, I will share this passage on the many social media websites that I go to. Hopefully, many more people will understand our, patients with TBI, situation.

On those rare occasions when I've told people what I live with after my accident, some have dismissively said, "Oh, I go through that too." That really ticks me off. I tell them, "I suggest you go out and get a brain trauma and when you come back, then we can compare notes." 

I am not a brain injury survivor but I have a wonderful friend who is. Recently a mutual friend to both of us said "You know he has more control than he thinks he does". REALLY!!! I wanted to smack him! Please don't make comments until you've studied and understand the situation. I am just glad my friend was not there to hear this ignorant statement.

What really gets me is when someone asks if it still hurts!  (Mine was almost 30 years ago.)

There were a few things on this list that I say to my husband who has TBI :(  I feel awful now....I am trying so hard to learn how to deal with his irritability & not take it personal.  I can handle just about everything else but his moods & impulsivity is really hard!  Thank you for this website...it has helped me so much!

I really found this to be very helpful, I think that I will do as others have suggested and post this on my Facebook page.  :)  That way, the "You look fine"s/"You seem fine to me"s will fade away, hopefully.  In any event, I believe you forgot one:  One of my biggest pet peeves, post-TBI is the whole, "I never said that/You said X/That conversation never happened (or didn't happen the way you remember)" thing.  I could do without hearing that forever.  It seems that my short-term memory, even these (almost) 29 years later, is not nearly as perfect as I would have it.  *sighs*  Another one that I hear all the time from my boyfriend is that, "Oh, so your life isn't worth living if you're not superior to everyone else, is that it?"  Simply because I *used* to have an eidetic memory, and now my memory is like a... metal things with holes in 'em... Sieve!  ;)  Seriously, I knew the word 'sieve' belonged there, but you get my point.  Searching for the right word is annoying when you used to know all the words in the dictionary, then you got bored and read the medical dictionary and Gray's Anatomy, too.  *sighs*

I hate when people, who have no idea, think my friend with brain injury is drunk because she limps and may forget what she is saying in the middle of a sentence. 

I have had my TBI since 1995 ( I turned 17 in a coma)   Im almost 36 now.....I wish I didn't live.  Nobody understands me ( what friends I have))!!!!      I had more friends then I knew what to do with?

WOW you hit the nail on the head with these things

It's not just what people say that's the biggest problem.  I would say my biggest problem with uninjured people is the looks and the assumption people have when either talking to me, walking by me, or in an area with me.  I'm 15 years post injury, and I've been able to come back almost fully with some deficiencies in my memory and/or speech but I appear injury free.  That's my biggest problem with uninjured people is that because I look relatively "normal" and I have problems remembering or getting more agitated, they think I'm doing this on purpose.  I'm not which is probably my biggest handicap now, frustration and channeling that frustration into something more productive and beneficial.  Finally, I would have to say if people want to understand head injuries more proficiently, get on an airplane, travel to a country they've never heard of, and try to fit in with the natives as if you've lived there your entire life.<span style="\\&quot;line-height:" 1.6em;\\"=""> 

Oh, what I would give to get people to read this! I am 8 months post TBI and I feel as if I have lost almost everyone I had in my life! I still have a few incredibly wonderful people that I would would give the world if I could!

I have a few people in my life who have suffered brain injuries, and this is a helpful reminder about things not to say.  I'd like things that WOULD be helpful to say, though.

This is perfect. It sums up my life at the moment and how hard it is when you want to get on but others don't accept your limitations. Thank you. Wish I could share on FB so my friends and family understood. 

I understand SO much - ALL of what has been written. It seems that no one has a clue about brain injury or the effects it has on individuals but those who have lived it! Especially, in the long term. As with all things, as mentioned many times, if others cannot see or experience it first hand it, they DO NOT BELIEVE IT! I have friends whom I will never spend time with again and I do not know how much longer I can stay married to my own husband!!!!!!! He was not around when my severe TBI occurred, refuses to educate himself on the facts, work WITH me on things that can help me with organization, etc, etc, etc, and blame me for everything and my "laziness" and "character".    God bless you all !

Excellent informtion, if we take a few things to use we all win.