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

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 th ings 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.

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 (438)

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."

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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.

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.

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...

From my experience, having TBI is one sure way to tell who your friends are.
I think I'm starting to discover my husband has a brain injury like me, cause there are signs like mine!
Thank you for opening the the world of brain injury to me. Alexa

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.

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.
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
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.
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.
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....
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.
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.
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?
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.
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.
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
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.
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....
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/
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.
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.
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!
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.
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. :)
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
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.
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.....
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.
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.
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.....
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!
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!
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.
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 .
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.
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 !!!
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.
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!
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.
#'s 2,3,4,5,6,and 8. i live my life hearing. it's debilitating and misunderstood. does someone really think i LIKE to be "grumpy" or repeated to over and over? this is not fun for me and certainly not how i planned my life would work out. as for #9....no YOU'RE lucky to be alive...i mostly breathe. big difference
I am 2 years in to recovering from a ruptured anuerysm that was coiled, and living with another unruptered anuerysm. My sister emailed me this article and yes I have been dealing with all those 9 no's! I found the following letter helpful and the site: bafound.org A LETTER FROM YOUR BRAIN Hello, I'm glad to see that you are awake! This is your brain talking. I had to find some way to communicate with you. I feel like I barely survived WWIII and am still not quite all in one piece. That's why I need you. I need you to take care of me. As time passes and you and I feel better and better, people, even doctors, will tell you that we are fine, "it's time to get on with life." That sounds good to me and probably even better to you. But before you go rushing back out into that big wide world, I need you to listen to me, really listen. Don't shut me out. Don't tune me out. When I'm getting into trouble I'll need your help more than I ever have before. I know that you want to believe that we are going to be the same. I'll do my best to make that happen. The problem is that too many people in our situation get impatient and try to rush the healing process; or when their brains can't fully recover they deny it and, instead of adapting, they force their brains to function in ways they are no longer able too. Some people even push their brains until they seize, and worse... I'm scared. I'm afraid that you will do that to me. If you don't accept me I am lost. We both will be lost. How can I tell you how much I need you now? I need you to accept me as I am today... not for what I used to be, or what I might be in the future. So many people are so busy looking at what their brains used to do, as if past accomplishments were a magical yardstick to measure present success or failures, that they fail to see how far their brains have come. It's as if here is shame, or guilt, in being injured. Silly, huh? Please don't be embarrassed or feel guilt, or shame, because of me. We are okay. We have made it this far. If you work with me we can make it even further. I can't say how far. I won't make any false promises. I can only promise you this, that I will do my best. What I need you to do is this: because neither of us knows how badly I've been hurt (things are still a little foggy for me), or how much I will recover, or how quickly, please go s-l-o-w-l-y when you start back trying to resume your life. If I give you a headache, or make you sick to your stomach, or make you unusually irritable, or confused, or disoriented, or afraid, or make you feel that you are overdoing it, I'm trying to get your attention in the only way I can. Stop and listen to me. I get exhausted easily since being hurt, and cannot succeed when overworked. I want to succeed as much as you do. I want to be as well as I can be, but I need to do it at a different pace than I could before I got hurt. Help me to help us by paying attention and heeding the messages I send to you. I will do my part to do my very best to get us back on our feet. I am a little worried though that if I am not exactly the same... you will reject me and may even want to kill us. Other people have wanted to kill their brains, and some people have succeeded. I don't want to die, and I don't want you to die. I want us to live, and breathe and be, even if being is not the same as it was. Different may be better. It may be harder too, but I don't want you to give up. Don't give up on me. Don't give up on yourself. Our time here isn't through yet. There are things that I want to do and I want to try, even if trying has to be done in a different way. It isn't easy. I have to work very hard, much harder, and I know that you do too. I see people scoff, and misunderstand. I don't care. What I do care about is that you understand how hard I am working and how much I want to be as good as I can be, but I need you to take good care of us, as well as you can do that. Don't be ashamed of me. We are alive. We are still here. I want the chance to try to show you what we are made of. I want to show you the things that are really important in life. We have been given another chance to be better, to learn what is really important. When it is finally time for our final exit I would like to look back and feel good about what we made of us and out of everything that made up our life, including this injury. I cannot do it without you. I cannot do it if you hate me for the way being injured has affected me and our life together. Please try not to be bitter in grief. That would crush me. Please don't reject me. There is little I can do without you, without your determination to not give up. Take good care of us and of yourself. I need you very much, especially now. Love, your wounded brain ©1996 Stephanie St. Claire May be reprinted for personal, not for profit use. Livetulaff@aol.com Contact me if you have any questions or comments.
of course they only wanted to share a few of the common misspeaks, but I see they left off the other side of 5/7. in some cases, yep, a survivor gets all kinds of support with people doing things for them that they stopped being able to do themselves because of the injury and yep, it can continue past the need as the survivor recovers... but in other cases, a survivor's injury isn't obvious to people and no one realizes they need help and no one offers because they aren't aware and then the survivor keeps trying to function beyond their capacity. and often, this worsens symptoms... then finally, people notice they need help;. . and so please don't think that all survivors need you to tell them to try doing it themselves . . because some survivors need you to encourage them to let you do some things for them so that they aren't constantly living with brain overload. hope I'm making sense to everyone. some of this stuff is difficult to explain... and then, of course my aphasia and difficulties being succinct get in the way lots of the time
TBI is certainly the Cinderella of all disabilities. Ignorance is common among most people. Very sad that because it's so often a hidden disabilities it's ignored and totally misunderstood. I often feel that it's portrayed so badly in television, I mean who ever really wakes from a coma to just be the person they were before with no apparent injury? It makes me so mad as this is one way it could at leat be shown to cause life changing aspects to the person. I wish that there was better education and information, sadly it's mostly only looked at when it happens to a family.
I have heard them all. It is immensely frustrating.
This article is so true! I would add two more things "not to say to someone with a brain injury." They are: 1. I know exactly how you feel. 2. Oh, it happens to all of us as we get older! Doris Sanders
So valuable--but not just because of the (spot-on) list, but especially because of the well-articulated, insightful explanations. Ten+ years post-injury, I've learned a lot about managing my "new" self, strategies, listening to my body, and ignoring well-intentioned but ill-informed comments. But any of the above remarks can still be frustrating—especially when I'm highly symptomatic. Just one thing to add to #1: Looking "normal" also can be a distinct disadvantage in terms of physical safety. My balance disorder and sensory processing issues make it even more difficult to function in "crowds" (ie, anyone besides me!) Having a service dog helps my stability, keeps people out of my personal space. The irony: I "look normal" and people say so! Note to fellow tbi-ers: don't give up, but do recognize realities of your needs. (It's taken me over an hr to write this; now it's nap time. When I wake up, I can sporadically be found on twitter: @nyoderharris)
This is excellent. I work very hard with my staff here at Learning Services to encourage independence and use the positive principles of PEARL. Also, Mandt training on relationships is an excellent source!
I am fortunate that NO one said those things to me. They could have or might have thought them, and one person who is a close relative has said to me, "You remember more than you let on, you're just using it as a crutch." Man, that hurts. I just can't imagine using my brain injury as a crutch. It ISN'T an excuse, it's a fact. I do every single thing I can do to improve my memory and utilize compensatory strategies always. I'm human though, I get lazy and stop doing what I should or don't try something because I don't think of it until it's TOO LATE.

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