9 Things NOT to Say to Someone with a Brain Injury

I had been diagnosed and cured in 2007 of a Brain Tumor. With that all of these side effects which were spoken of, above, have surely befallen me. I applaud whoever wrote this article and how accurate it truly is to how WE the survivors of Traumatic Brain Injuries (TBI's) feel. Especially with how in the final piece that you discuss. How we all HATE when anyone says to us, "You're lucky to be ALIVE!" because we aren't "lucky" at all, we were STRONG individuals who loved life too much to just want to give up, as many can if they feel too weak. Not only that but it makes us feel Shame when people compare our victory in the war against cancer to just simple luck.

 I honestly have no idea how my wife has put up with me over these last three years.  It was a nasty epileptic seizure that threw me down onto the pavement, and the convulsions repeatedly smashed my head and face into the ground until my head was just so much pulp (and while that trauma was the worst--they talked to my wife about "end care" in the E.R.--I had three similar head injuries also resulting from grand mals). And a recent bout with sepsis didn't help with emotional grounding, which is perhaps the big, bad problem my wife has been facing every day since; my inability to handle frustration, this constant and voracious anxiety, this unfamiliarity with a world I used to navigate fairly well.  Perhaps the hardest part for her is my ridiculously reclusive behavior; because of me, all of our friends disappeared, I'm at a great arm's length from her own family members and I find myself turning to alcohol to numb the horrid fear that is loose inside.  For those who have stuck with someone with a TBI, my heart is with you.  I cannot imagine the hell I've put my wife through.  Never in my (old) life would I have even imagined such behavior.  Oh, I hardly mean that "back in the day" I was some saint; honestly, I cannot remember what I used to be like, and that huge absence just constantly terrifies me.  I just in some way, little by little, I can try to begin to make things somehow better for her...

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

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.

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.

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, 

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 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.

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 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.

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.

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

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

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?

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.

 

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. 

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.

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.

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.

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.

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." 

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

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 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?

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;\\"="">