9 Things NOT to Say to Someone with a Brain Injury

Marie Rowland, PhD, EmpowermentAlly
9 Things NOT to Say to Someone with a Brain Injury
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Brain injury is confusing to people who don’t have one. It’s natural to want to say something, to voice an opinion or offer advice, even when we don’t understand.

And when you care for a loved one with a brain injury, it’s easy to get burnt out and say things out of frustration.

Here are a few things you might find yourself saying that are probably not helpful:

1. You seem fine to me.

The invisible signs of a brain injury — memory and concentration problems, fatigue, insomnia, chronic pain, depression, or anxiety — these are sometimes more difficult to live with than visible disabilities. Research shows that having just a scar on the head can help a person with a brain injury feel validated and better understood. Your loved one may look normal, but shrugging off the invisible signs of brain injury is belittling. Consider this: a memory problem can be much more disabling than a limp.

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2. Maybe you’re just not trying hard enough (you’re lazy).

Lazy is not the same as apathy (lack of interest, motivation, or emotion). Apathy is a disorder and common after a brain injury. Apathy can often get in the way of rehabilitation and recovery, so it’s important to recognize and treat it. Certain prescription drugs have been shown to reduce apathy. Setting very specific goals might also help.

Do beware of problems that mimic apathy. Depression, fatigue, and chronic pain are common after a brain injury, and can look like (or be combined with) apathy. Side effects of some prescription drugs can also look like apathy. Try to discover the root of the problem, so that you can help advocate for proper treatment.

3. You’re such a grump!

Irritability is one of the most common signs of a brain injury. Irritability could be the direct result of the brain injury, or a side effect of depression, anxiety, chronic pain, sleep disorders, or fatigue. Think of it as a biological grumpiness — it’s not as if your loved one can get some air and come back in a better mood. It can come and go without reason.

It’s hard to live with someone who is grumpy, moody, or angry all the time. Certain prescription drugs, supplements, changes in diet, or therapy that focuses on adjustment and coping skills can all help to reduce irritability.

4. How many times do I have to tell you?

It’s frustrating to repeat yourself over and over, but almost everyone who has a brain injury will experience some memory problems. Instead of pointing out a deficit, try finding a solution. Make the task easier. Create a routine. Install a memo board in the kitchen. Also, remember that language isn’t always verbal. “I’ve already told you this” comes through loud and clear just by facial expression.

5. Do you have any idea how much I do for you?

Your loved one probably knows how much you do, and feels incredibly guilty about it. It’s also possible that your loved one has no clue, and may never understand. This can be due to problems with awareness, memory, or apathy — all of which can be a direct result of a brain injury. You do need to unload your burden on someone, just let that someone be a good friend or a counselor.

6. Your problem is all the medications you take.

Prescription drugs can cause all kinds of side effects such as sluggishness, insomnia, memory problems, mania, sexual dysfunction, or weight gain — just to name a few. Someone with a brain injury is especially sensitive to these effects. But, if you blame everything on the effects of drugs, two things could happen. One, you might be encouraging your loved one to stop taking an important drug prematurely. Two, you might be overlooking a genuine sign of brain injury.

It’s a good idea to regularly review prescription drugs with a doctor. Don’t be afraid to ask about alternatives that might reduce side effects. At some point in recovery, it might very well be the right time to taper off a drug. But, you won’t know this without regular follow-up.

7. Let me do that for you.

Independence and control are two of the most important things lost after a brain injury. Yes, it may be easier to do things for your loved one. Yes, it may be less frustrating. But, encouraging your loved one to do things on their own will help promote self-esteem, confidence, and quality of living. It can also help the brain recover faster.

Do make sure that the task isn’t one that might put your loved one at genuine risk — such as driving too soon or managing medication when there are significant memory problems.

8. Try to think positively.

That’s easier said than done for many people, and even harder for someone with a brain injury. Repetitive negative thinking is called rumination, and it can be common after a brain injury. Rumination is usually related to depression or anxiety, and so treating those problems may help break the negative thinking cycle.

Furthermore, if you tell someone to stop thinking about a certain negative thought, that thought will just be pushed further towards the front of the mind (literally, to the prefrontal cortex). Instead, find a task that is especially enjoyable for your loved one. It will help to distract from negative thinking, and release chemicals that promote more positive thoughts.

9. You’re lucky to be alive.

This sounds like positive thinking, looking on the bright side of things. But be careful. A person with a brain injury is six times more likely to have suicidal thoughts than someone without a brain injury. Some may not feel very lucky to be alive. Instead of calling it “luck,” talk about how strong, persistent, or heroic the person is for getting through their ordeal. Tell them that they’re awesome.

Posted on BrainLine October 10, 2012. Reviewed July 25, 2018.

Written by Marie Rowland, PhD, EmpowermentAlly. Used with permission. www.brainhealthconsulting.com.

Comments (497)

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.

Anonymous replied on

I have heard a few of those. I stopped talking to the public because nobody would give me time to finish my sentence. I got tired of the "you're from outer space" look. I isolated myself, now I find that I have anxiety attacks when I have to speak in professional situations. I want to go back to work, but I no longer have confidence I used to. I need a class or something to help me .

Anonymous replied on

wow..#9 is something I hear over and over again, its very frustrating and we can't explain that we don't always feel so lucky. Living with a severe TBI is no picnic and I am challenged daily by normal tasks. Emotionally I think I have lost alot of ability to care period...I never thought 2 years later things would get worse..but they do some days. I extend my love and hope for all of my fellow survivors..you are not alone, lets take it day by day..best wishes in the new year!! 

Anonymous replied on

I AM A TBI SURVIVER 6/22/07   2 MONTHS IN ICU WITH INDUCED COMAS.  WENT TO REHAB 5 DAYS A WEEK FOR A YEAR.  LOST ALL PAST OR PRESENT MEMORIES.  I AM MUCH BETTER NOW, MAINLY BECAUSE I HAD GOOD CARE AND DOCTORS.  BUT MOST OF ALL I HAVE THERAPIST WHO IS ALSO A TBI SURVIVOR HERSELF.  I CANNOT TELL YOU HOW IMPORTANT IT IS TO HAVE A THERAPIST WHO IS ALSO A TBI SURVIVOR!  I AM A MUCH MORE POSITIVE THINKER NOW AFTER THE ACCIDENT.  I BELIEVE THAT OUT OF EVERYTHING BAD THAT HAPPENS SOMETHING GOOD COMES OUT OF IT , IF YOU ARE "PATIENT" AND ACCEPTING.  I NOW DO VOLUNTEER WORK IN THE REHAB FACILITY I GOT BETTER AT.  I WORK PRIMARILY IN THE TBI UNIT AND AM TOLD BY THE THERAPISTS AND DOCTORS HOW GOOD IT IS TO HAVE ME THERE.  BECAUSE IT IS GOOD FOR NEW PATIENTS TO KNOW THEY ARE NOT ALONE.  I AM SO GLAD MY THERAPIST TOLD ME ABOUT THIS WEBSITE!      GETTING BETTER EVERY DAY,  DAVID B. ST. LOUIS, MO.

Anonymous replied on

All have been said to me by one or more of my relatives or people whom have said they care about me. Hard to handle at times, got to keep moving forward and looking up.

Anonymous replied on

#9 Let's me know that I'm not alone. I really want to strangle people when they tell me I'm "lucky to be alive."  Lucky was what I was 12 and a half months ago. Thank you for this.

Anonymous replied on

the one november sharing is great. yes, stop telling people with t.b. i's. that they are lucky about anything. luck is not tangible and no one can give what they don't have. my wife has a t.b.i. from 2005. and the neuro's i have encountered were pretty much idiots and morons, with the exception of one. i have spent pretty much the last several years reading nothing but neurological books and magazines. i have well over 100 books. and 70 more to read.  if you don't know what to say, i think one should be safe and just shut up. the best thing any family member can do is educate themselves.  when educated people use the word "luck" sad to say, poor excuse for education that you have. i will continue to read and educate myself on the brain.  since this whole mess started, it's been hell but getting better. there are more than 9 things not to say. but i don't wanna ramble. some of us could go on. don't want to. school starts for me in january for going for a degree in neuroscience, since no one seems to know what's going on with my wife's brain, i will get it figured out.  thanks for taking time to read this, if you did. Ian Lees

Anonymous replied on

I've had TBI since 9/96, I was in the hospital for 2 months - when I did get out I had to go to physical therapy for 1 year 40/hrs a week - to learn how to walk,talk,eat everything like I was a 1 year old, I got TBI from a car accident which I also lost my 8 year old daughter in. I didn't know that because I was in a coma for 5 weeks - when they told me her name I didn't remember who she was and it took me along time to remember anything. To this day I don't remember the accident because I was sleeping - my boyfriend was driving.  A man ran a stop sign and hit us and that is how it happened.  The man who hit us was drunk .23 and my boyfriend also had a .09 but it was his 4th one. So needless to say he doesn't have a license anymore. After I got out of hospital I started doing my therapy and in that time I became pregnant - but didn't know until I was 3 1/2 months because with having the BI it made all my female things stop. Anyway I ended up marrying my boyfriend when I was 5 months preg. because he never had a kid and I wanted to have another.  All was good for about the first 4 years after we married then it just started going down hill - of course it was my fault because I have BI - but we moved to a northern state for him to get his degree (he's from up north) I've always lived in FL. so didn't know anything about driving in snow and ALL that goes with living up north and remember he didn't have a license so I had to do all the driving also was raising a 4 year old. We lived up north for 4 years then I told him I was moving back w or w/o him and he came because he was having a problem getting a job w/o a license. So now we were back and he got a good job making good money but everyday when I would go take him to work and my son to school I would then go p/u son and a hour later have to go pick him up from work. He would come home eat the dinner I cooked then go to the spear bedroom where he played video games like 4 to 5 days a week. One night he went in there after dinner and I put our son to bed then I went to bed a little later but woke up at 5am to find him not in bed - I was like "OH no he fell asleep in the spare room." So I got up real quick to go get him and he was awake still playing video games. That was a Mon. and we had been fighting for like 2 to 3 years before so on Fri. while he was at work I moved and lived with friends until I could buy a house,I bought one 30 miles from his and our son hasn't and won't come stay w/me he stayed living at the other house because of school, friends and of course his dad is cool and plays video games like he does. Now I have a nice house/divorced from the one I fought with all the time and I'm living on disability and alimony.  Fun Fun!!!  My ex acts like he's all happy but I bet the place hasn't been clean since I moved and my son only sees me when I go take him to get something to eat or drink or clothes shopping or whatever he might need or want to do. I've moved out and am doing the best for myself but I miss my son!!!!! He wouldn't come stay with me when I lived 5 miles away because he said it felt weird staying over someone's house. "I'm his mom and I had a bedroom for him then and now at the house I bought I got him a bed, dresser, cable tv in there and he still doesn't want to come stay with me.  I told him if he would come up like once a month that would be great and he won't do that.  But of course my Ex makes a deal about it because I never have him spend the night.  How are u supposed to make a 16 year old come stay if he doesn't want to?? But by the divorce parenting plan he is supposed too but won't. So that is how it is for me now. Yuk!!!!!

Anonymous replied on

A brain injury" is unpredictable I had a right frontal Lobe injury! The important thing is to diagnose it to better no how to get help and learn to live with it. But Dr's are the real problem...looking at you like you are nuts! Its not easy to live w/a victim of a head injury! Just hope and pray it will get past the point of it being tolerable to adjust too. Best Wishes!

Anonymous replied on

RE: "I wish i didn't have TBI. it been impacting too much on my life now that i am in college. i cry almost every day thinking about the past. this college has been so unfair to me. I keep thinking will i ever make it through with my biology degree in my hand."

________________________________________________________________

Above......hang in there.....i was in the  same situation in 1985. I had my TBI just after my 3rd year in College as a college baseball player. It was tough.....I cried most days as well. I graduated after my 5th year with my BS in Bus Admin. I have been a small business owner for the last 10 years as a Financial Advisor and Insurance Professional.

Good luck...I just wanted to let you know that you are not alone, although it seems that way. I'm pulling for you.

Anonymous replied on

I have recently started a relationship with a man who acquired a TBI after a motorcycle accident 15 years ago.  I knew him before the accident but have not seen much of him in the past 10 years or so.  We are trying to work through the initial stages of our relationship carefully and together so that he feels comfortable and I do not do or say the wrong things so this article and others related to it are extremely helpful.  However, I have read that if the frontal lobe is injured, it can cause an impairment to right or wrong decision making and a lack of consideration of consequences to actions.  Recently my partner made advances (apparently in jest) to another female over the internet and explained our sexual behavior quite graphically to the other female.  He also suffers with low self esteem and often puts himself down.  Can someone help me to understand his behavior as I would really like to help him rather than judge him and just be yet another person who lets him down and leaves him lonely and isolated. 

Thanks and good luck to all.

Anonymous replied on

I had a minor concussion about 11 months ago from snowboarding. I had a helmet on but.. i do not remember but i think my snowboard hit my head through the helmet I had a lot of these symptoms and still experience memory loss. Unfortunately, I feel anxiety, independence and articulating speech are the toughest to struggle with. One thing I am not sure about is.. it has been almost a year, am I still suppose to be experiencing discomfort with my everyday tasks? I can't seem to hold on to thoughts for long or recall memories as easily or frequently...

Anonymous replied on

From my experience, having TBI is one sure way to tell who your friends are.

Anonymous replied on

I think I'm starting to discover my husband has a brain injury like me, cause there are signs like mine!

Anonymous replied on

Thank you for opening the the world of brain injury to me. Alexa

Anonymous replied on

I suffered a brain injury in early 2011, from hypoxia due to a cardiac arrest. While most of this article resonates, you left out a very common thing people say. When a brain injured person tells a "normal" person that they have memory problems, the normal person tries to make them feel better by saying something like "Oh, that happens to me all the time! I forget stuff all the time."

The normal person simply does not realize how different their forgetfulness is from a brain-injury survivor's innate memory issues.

Anonymous replied on

I wish i didn't have TBI. it been impacting too much on my life now that i am in college. i cry almost every day thinking about the past. this college has been so unfair to me. I keep thinking will i ever make it through with my biology degree in my hand.

Anonymous replied on

Well written - unfortunately physical is recognized and catered for, unseen impairments seldom receiving due recognition. My son became involved with paracyling and came home demoralized commenting that he felt he was the most disabled of all participants yet was given scant regard for his needs and impairments 'you look OK so you are OK' where those who were blind, had a missing limb were well catered for. The cousin with a missing eye due to a car accident had a dream run with insurance company, received a good payout and was able to continue with her life. This family is at a loss to understand but were told that losing an eye is a 50% impairment therefore worth more than a TBI. Sadly not all family members understand executive functioning and the cognitive side of things either so it makes it so much harder for the person with TBI. Articles like this are most helpful to pass on to others. Many thanks

Anonymous replied on

I've lived with tbi since 1994 and I am sorry others have to live with it too...but I am happy to see others expressing the anger and fury I have felt (and expressed) about what we have to go through because of the injury. I wish there were mentions of people seeing which difficulties in life are from violations of our civil rights...and there are plenty. We can start with the medical establishment's insensitivity to our circumstances. Doctors' offices with bright lights, rapid-fire speaking office personnel, doctors and nurses who do not understand what it means to go through their routines with our TBI. I have to fight in hospitals for quiet waiting areas, slower speakers, etc. while I am managing illness on top of tbi. Just as hospitals and offices must make accomodations for people with other disabilities, they are required to consider us too. Even in county provided transportation, the needs of people with TBI are not accomodated, but the needs of people in wheelchairs are. Even in cross-disability advocacy groups, lights will be brightened for folks who need it, but not dimmed for those of us who need it. Civil rights education should be part of every rehab program for folks with TBI and their families.

Anonymous replied on

i hear#9 the most.i'm near 10 years with tbi. i gave all of my 30s to it. i hear all the rest as well. sad because when people don't get the response from me. the response they want to hear, they often begin to drop contact with me. there is so much emotion in loss of old self and change/loss of relationships. yes, i am quite angry. i begin to distance myself too. because old friends and family they are all momentos of the person, i lost.

Anonymous replied on

Hi. I want to give some insight on not just the article but the comments provided. In some cases it doesn't matter how much education you give people. As much as we wish those folks were educated on TBIs and the implications we face, the only effective way to teach them is first hand. How many of you would wish this impairment onto anyone else? I won't, not even to my worst enemy. I don't know any of you and I have no idea how far you have gone while facing your impairments to whatever degree they are. But look at where you are, the environment, and if it is not beneficial for you, move. I say that from experience. Because of where I was when I got my TBIs (I have three), I knew only violence accomplished anything. Keep yourself away from that whenever possible. Because of where I was forced to live, I'm aggressive. I'm an a**hole, I can be and usually am rude. And I'm not beyond using force to get my point across. That's not the way it should be. But be so very careful, because there are so many people out there that will take advantage of you, and because of your impairments the system is not in your favor. Nor is society. You have your friends and you have your family. Don't count on anyone else being there for you when the chips are down. Well, I also try to be a Christian, so if religion is important to you, stand firm by it no matter what. In my opinion, my three TBIs (first one was severe, second one was moderate and third one was serious) are not my disabilities, but my impairments. My impairments but society's disability. It complicates my life, but the only people it truly impairs are those that are not affected by it. And if at all possible, contact a nutritionist (not a dietician, a nutritionist) AND an accupuncurist. I stand by both services in how well they helped me. Enuff said....

Anonymous replied on

After a subdural hematoma, I found that my 'friends' mostly vanished, but I realized who my true friends were. It was heartbreaking to have my best friend say,"You're not the same person," and walk away. I've found myself, even without the support of those who I assumed would have been there for me. If you have a head injury, you should come to terms with your situation, make amends, set goals, and keep working for your dreams.

Anonymous replied on

I was electrocuted about 8 months ago while remodeling my kitchen. Someone threw a breaker back on while I was wiring a new oven/range outlet, which runs 220. I was checked out by an urgent care Dr. and told I was "fine" and "lucky." I had minor burns on my hands, and feet where the electricity entered and grounded out of my body. I don't feel fine. I struggle with many memory issues, especially names and dates. I have issues with time. Sometimes I have trouble grasping words while speaking or writing. It's frustrating when people say, "The Dr.says you're OK, so I don't understand the problem." Problem is, my brain was partially cooked.

Anonymous replied on

My friend who posted this article on facebook today was much like all of these long before his "brain injury." Especially the grumpy part. So long as I've known him. His whole life as far as I know. Sure he could have died, but there was no damage done, and he really is fine now. This person has always tried to justify the way he acts, and never takes blame for being a nasty jerk when he is. Don't get me wrong. He is a beautiful person, and makes some most amazing art. He just acts so nasty at times, and this is just another thing for him to push the blame on for the way he acts. It's always the fault of someone/something else. What might you suggest for someone like that?

Anonymoua replied on

Wow! You're no friend. TBI tends to amplify those traits, so give your head a wobble, reread the list and believe what your friend tells you. Or just get out of their life as they do not need people with views like yours in it.

Anonymous replied on

I was shot in the back of the head in November 2009 and had nearly half of my cerebellum destroyed; the cerebellum is associated with balance, corordination, fine motor skills, etc. By the end of my hospitalization in a therapy rehab hospital I, for lack of a better word, "recovered" to the point where my injury was hardly noticeable or wasn't noticeable at all. I realized i would experience prejudice for being mentally handicapped, so i worked extra hard to achieve that goal to blend in. I practiced the balancing exercises given by my physical therapist religiously, obtained my drivers license, am on track to receiving my associates, alongwith re-learning how to play the guitar (which asks alot from the cerebellum.) I am currently taking classes at my community college. My TBI is very severe and my memory is affected tremendously, which makes even the simplest of tasks difficult. This article was very thought out and written very well. Everything mentioned is exactly what i experience, i feel alone because nobody is like me. I mean that as in, my case is unique and i feel that i cannot relate to other people who have suffered a TBI. Like i said, this article hits the nail on the head.

Anonymous replied on

Ya, well im 17 now, and I had used drugs quiet often and would do a lot of them, for a long period of time, like, I pushed the limit of what or how many your supposed to take, and not cross it with this drug, you know? but iver been clean for 3 years now, its affected my ability to learn, even read a book, and its that bad. Ive had 4 MRI's and they all indicated that I had brain damage on the right side of my brain, due to drug use. I was told when I was much younger that this is what it said, and yes, you do have brain damage, but lately as I get older people are telling me that I don't have brain damage, and maybe it was just something I misunderstood. and say all these things to the point where im like ok, whatever well I have damage to my brain, it atleast makes me feel better, I think people who say that are so far off. they don't know what its like.

Anonymous replied on

Hello my name is Teresa I live just outside of Nashville Tn. I am 56 an had a brain annie surgery in 2002.I understand so much these post.I have searched for 10 years to try and get some kind of help and I don't understand why no one can help us.I was a nurse LPN for many years and now I find that we with brain injury's have been dicarted and I for one have given up all hope of getting the right kind of help.My heart hearts for all of us especially the ones of us that live alone with this illness and for myself my family didn't support me at all and my friends just look the other way and say all these things with one more Oh I know getting older I know what you mean and you look great and you are so lucky,well I don't feel lucky and yes I want to die everyday since I know that evey care giver in the health system only says here take this or that anti depressant and see ya later.I for one have had those med's make me feel worse and to be no help at all. Not one time have they offered to look at my brain functions. I have only had one scan done in 11 years because they say my clip would cause problems.I was so hopeful early on that someone would help me,but have found now after all these years it's not gonna happen.I want everyone to know how sad I am for all of us and so wish someone could be some kind of voice for us to get help.I see all the movie stars on TV or people with lots of money get the help they need while we are thrown in a sea of confusion and heartbreak.I was a very independent person worked hard all my life and now and left with a brain injury that no one can either help me with or even talk to me about.I look fine as they always say. I am mobile,but I can't put my clothes together.I can't go to a store without being so overwhelmed that I almost run out as fast as I can.I have decided to just isolate myself at home so I don't have to hear these comments or be around anyone anymore.Just my little dog Mazy and Me.I have read,looked up sites like this,been to countless doctors,counslers,and its all the same take this anti depressant and that's it,that's all...so so sad

Anonymous replied on

I hear and read about TBI treatments, but cannot actually find or get any within V.A. ?? Seems to be a lot of hype. I am having angry outbursts and suicidal thoughts, confusion and my car accident was years ago. I just get the runaround and cannot handle stupid psych doctors that sit and watch me talk. Is there any computer mind treatment programs. I cannot work and have trouble filling out requests for help from social security, i\'m broke. Can\'t stand to be around people at all. Don\'t feel safe and others may not be safe around me. I am about to go postal.

Anonymous replied on

My accident was August 23, 1997 and the man that was speeding and had no insurance has no idea what I experience. If anything is out of site then it is usually out of mind for me to some extent and another irritability is "well at least you have an excuse"...really people?? When you have had a severe traumatic brain injury and left to survive on disability....then we will talk...or "stop talking about it...nobody wants to hear about it". These things should be posted in every neurology office across the country....

Anonymous replied on

An additional problem is with people who have a high IQ and a TBI. High IQ people are perfectionists, driven to inquiry, and used to being able to grasp new concepts easily, among other things. With TBI, the intelligence is still there but the ability to use it has been put through a blender. It is hard work, but cognition can improve thanks to brain plasticity, or ability to constantly change according to its input. A site I found helpful is called Dancing Upside Down, but there is a galaxy of information on the Internet, too. http://www.dancingupsidedown.com/

Anonymous replied on

Yes, I, like a majority of those whom have a posted are disheartened at how this injury is portrayed esp. in the media. In 2009, after returning from Iraq for the fourth time, I was at a cookout at a lake when a drunk idiot on a jet ski hit me in the head when I had just jumped in the water to cool off beside the boat. I was in a coma for a month and rehab for about 10 months after (severe TBI). I could use this page to remind me of the things I have gone through and some deficits I still have. It is extremely difficult to deal because it is a HIDDEN injury. I pushed though because I told myself that God and my stubbornness were going to get me better. So much better that I graduated college and can say the I'm about 95% back to the old me. I still have aphasia, dysphasia and some vision issues but I think I'm going to be 100% soon. Please don't think negatively about your situation, pray about it instead.

Anonymous replied on

My name is Bryan Steinhauer, this article definitely hits home for me. I had a bad brain injury around 5 years ago, when I was assaulted in my favorite bar before graduating college. I woke up in the hospital unable to move or talk and no memory of what happened to me. Google my name, and you'll find out the same way I did. The support I reveived led my recovery, both from people who I knew: my parents and friends. As well as people I met: my doctors, therapists and aides. It's tough enough for young adults to find themselves naturally, throw in a brain injury and often people feel like they have no chance. That's why I started Minds Over Matter, a partnership with the same hospital in which I was an inpateint, Mount Sinai in New York City, to support young adults with brain injury. Please check out the Facebook page or email me at MindsFind@gmail.com if you or anyone you know is in the New York City area and can benefit from such support.

Anonymous replied on

As with any injury, it is best to be well informed about the road to recovery and what it will take to travel it. Trust me i have a tbi and am fairly travelling the road myself. Sometimes i get a flat and other times it seems too secluded. But keep your eyes on the moment to moment at first , accepting any help kindnesses offered and soon you'll see mile markers of sorts go by. That is a wonderful feeling!

Anonymous replied on

I was electrocuted 7months ago and it is very hard people don't know how hard. Another thing you may not want to say is 'oh come on you remember me'. Don't make me feel like I'm stupid. I hate life now people just don't understand.

Anonymous replied on

I said it when I went into a home for those with a brain injury after an auto accident(I left there after a couple of months). I, with half a brain, am still twice as smart as most everyone else. Judging by these letters we all are. :)

Anonymous replied on

Hello everyone, my name is Bryan Steinhauer. Some of you might know me from the news, both about me and made by me. You see I was the victim of a real bad aaaault that occurred right before I graduated college. At my favorite bar, a place that was like my second home! I had no idea what had happened to me, I couldn't move or talk. No memory, and I was being attended to constantly in a hospital while going through painful stretching everyday. I had no idea, until I found the news on my lap top. Google my name, you'll find out the same way I did. Except I took charge and changed that story line. From tragedy to a success, from horror to a blessing. A lot of my story is a result of my hard work, determination and flat out stubbornness. I would not stay down for the count. But I think more then that it was the support I had that made the difference. It was my friends, family, and people I didn't even know before: my doctors, my therapists, my hospital attendees. These people mean the world to me and led my progress. It's because of them I started Minds Over Matter. Anyone with brain injury in the NYC area please check out my organization and the programs I run at Mount Sinai. (www.facebook.com/MindsOverMatterFund) Or email me at MindsFund@gmail.com

Anonymous replied on

Ah yes, those dear fools who feel they must say something. It's been nearly 38 years since I was struck by a hit-and-run driver (I was a pedestrian). I lived through 3 skull fractures (basal and mastoid), deafness in my left ear (mastoid bisected the ear canal), and balance issues which remain (although less intense). I have no memory of the accident and no memory of the first 5 days in the hospital; the last 5 days are remembered as a slide show. After more than 3 years of recovery, I returned to university and earned by bachelor degree. I am fortunate, not lucky, to have lived. I am blessed to have recovered so well. It's been an education that has taken me some very interesting places and people. I am now an ordained clergy woman and my experience helps me teach others what to say and what not to say.

Anonymous replied on

All the time: Oh, I know exactly what you mean....I have memory problems too...it\'s an age thing. That is probably the one I hear the most that frustrates me. It\'s not the same...not the same at ALL. I know people come from a place of goodness when they say this, and usually after a few well rehearsed lines in response, they do get it...but it is just so frustrating to constantly hear this.....

Anonymous replied on

i was in a car accident in 83, i feel it was a tuff road n get upset when i think about all the crap n crappy ppl i had 2 deal with. afta 30 years (very nearly - 23/7/83)ive learnt 2 live with my probs, but it doesnt really get much easier. friends have gone, other friends came n went but now ive taken control n it couldnt really be much better.

Anonymous replied on

I was in government work and suffered 2 tbi's, also in severe chronic pain. Efrafon 2-10( perphenazine & amitriptyline) (which is actually an Anti-Psychotic) BUT DONT BE TURNED OFF/AWAY BY THAT,.......WORKS for those that are agitated by frustration whether from the chronic pain they may be in, or ??. My Psych prescribed it as he knew that it works as he specializes in chronic pain. HANG IN THERE.People will understand if you make them understand;...if they don't F**k 'Em. I sent a test result from a Neuro-Psychologist ( 6 hour test ) to my relatives to help explain why I am the way I am along with downloaded symptoms highlighted by myself, as I can write a lot better than I can speak; the words/ideas flow better when writing. If your people don't want to understand/support you, then find some that will. DAWGSOLDIER.

Anonymous replied on

This is my first time looking up information on a TBI, I acquired mine in 2002, in a car accident in which I do not remember. It really make me feel weird, to say the least, reading these posts, as I say to myself... oh I know exactly how that feels.....

Anonymous replied on

I have had TBI X3. I feel everyone's frustration and you are right unless you have had one, you don't understand and never will. My most recent one was seven months ago. I was in an explosion and had to start all over again with many things. But, I choose not to get angry anymore. I just chalk it up to them being ignorant and "us" being Highly Intelligent!

Anonymous replied on

These are so TRUE and should be put on every refrigerator or common spot of every household where a TBI survivor lives. These are so important!

Anonymous replied on

what does anyone think about a dentist drilling teeth after a head injury///wouldnt this jar the brain a bit too ezpecially in a fragile or damaged state? also the article shown here may be true but i disagree that meds repair the brain as that is not true. it can be damaged. meds only work around the damage, not repair it or the issue the docs are attempting to treat.

Anonymous replied on

my car accident was in aug 2008, all my family disowned me after 2 years trying to cope with me as my GP never refeered me to anyone.i am still house bond and have support workers to take me out and go to a day centre once a week for people with brain injury.i have had all of the 9 things said to me and more.i was told i had pcs . i am getting the support now but my kids wont talk to me and have not bothered to learn about my condishion . my GP has no idea about how to deal with me so they dont.i must say that since been on the pcs on facebook and talking to others with pcs i am not as anxious. it helps me just knowing that i am understood .

Anonymous replied on

I am living with a person who happens to be recovering from a brain injury. I wonder how many cases of divorce and estrangement from families has resulted, because this is a difficult path and life. The care person is both resented and often necessary. The resentment hurts.

Anonymous replied on

PEOPLE AND MEN DON'T GET IT !!! THEY JUST JUDGE AND MAKE ME FEEL HADICAPED! AND UNBLE TO LIVE MY LIFE THE WAY I WOULD LIKE TO LIVE IT !! !! BOTTON LINE !! I AM LIVING WITH A BRAIN INJURY AND IT IS DIFFICULT ENOUGH !! I AM "NOT" BRAIN DEAD JUST BRAIN INJURED LEAVE ME ALONE !!!

Anonymous replied on

Yes, I have a brain injury and I have had doctors tell me that I am "Normal" frankly either their education needs to be updated or the MRI machine is faulty or blind not to see that I have three hematomas on the right side of my head and a little hole on my forehead from a traumatic injury to my head and several others from being hit on the head by men that were abusive and falling from the top of a bunk bed. I do have physical signs of a traumatic brain injury and what I don't understand is that the signs all there and they refuse to see it and I don't understand why. I hate it when people make my life harder then it already is. I have had people tell me that "everything will get better, I am a "poisonous women" and "No wonder you don't have friends" kind of thing if they only knew that I have a brain injury and impairments that I have been living with all these years. I don't know what these people expect of me as far a life is concerned. I am able to work but I have a difficult time dealing with people in general. I am "CRITIZED" by men and women and there is no "Wining" with people no matter what I do, how I do things, how I want to do things, and what I say I don't seem to be able to win just get hurt and be taken advantage of, intimidated by people, and last but least the big one "PUNISHED" some how. Having a brain injury is a big struggle in my life because people are mostly the problem.

Anonymous replied on

I just read about 9 things that someone should not say to me. And funny that someone wrote these things that \"Should not be said to me\" I have someone in the shadows that is making medical decision and deciding for me what I need and don\'t need and I am really angry for that. I feel that my doctors have not fought hard enough for me. They give in to another doctor to take over and I think that really is not a good thing. I leave hating the doctors that treated me and I have resentful feelings towards them. I have had only I have to say a couple of really good doctors in my life, and since I left him I have never found any other doctors to replace him. I have ended up with stupid ones that have caused me problems and calling dibs on me. I am fed up with them!

Anonymous replied on

I was in a car accident and had a brain injury. I am still having trouble with my family understanding why I don't remember faces sometimes, and how I have to recheck everything when I leave the house, they keep saying I have OCD. I can write and still do a lot but sometimes I do talk way to much and can't get myself to show down. I do I get them to help me more, I think I am going to save this and show it to them it tells all I have been feeling. They think because I can think again I am the same person I was before. But, deep down I know I have trouble with certain things. I try my hardest to remember faces but I get so confused sometime and it takes a while for me to figure out who they are. My friends have been the best help when I get to talking they help me slow down when I can't get myself to shutdown. I just want my family to understand I will never be the same.

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