9 Things NOT to Say to Someone with a Brain Injury

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#'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.

After holiday crush...would like to link up! I have a brain injury that is NO FUN!
Michele and Cooper..service dog!

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.
Here I go again! One person wrote they do not like it when someone tells them: \"Make a list\"; \"Use post-its.\" I make lists ALL the time - most people do, brain injured or not. \"Use post-its\" AGAIN - - I use them regularly in my Daytimer,etc. to draw my attention to an important appointment. They are a VERY helpful. To use some Jamaican dialect, \"Try it, nuh?\" Margaret (who lives with moderately severe brain injury :))
Excxellent list of prime importance , Congratulations.
Assessing for TBI and other neurologically born causes of behavior disturbances is so important for us who are in the helping field. Sometimes we want to get straight to helping through listening for psychological disturbance born of relational life history, but we need to pay attention in the initial assessment to their medical and physical histories. TBI, thyroid, diabetes, and other body and brain problems are sometimes a source of great confusion and discomfort that can cause behavioral and emotional issues for client/patients. So important!
I'm nearly blind with tears as I write this. Since that fateful day in 2009, I have wished I hadn't protected my face. In my darkest moments, I wish I hadn't survived. I wish there was some other screaming tell-tale sign that qualifies the magnitude of destruction of my body, my spirit and my brain. What I have suffered most from since my accident is mass ignorance. If you survived such horrible atrocities, how are you able to write/talk/look/act like this? You must be faking/lying/exaggerating. Who would lie about something like this?! This DID happen, and I live every day in pain, despair, and without true understanding from anyone about what happened to me. I'm to the point that I want to shave my head, show the world my terrible scars. But I already know people just don't care..
I agree with everyone and especially the Oct 13th, 2012 2:42am comment jumped out Thanks for the article, it reminds me how far I\'ve come and how much I\'ve \"taken\" from others. If we could all treat each other with this kind of respect and kindness, brain injury or not.
Yes, I agree - because it is not obvious from the outside, people who have know you before the BI can't guess what is going on in your mind. You still look the same but inside things are different. It as taken me nearly 6 years to feel "normal" again, though I still have spells of extreme tiredness but getting over that now thanks to a few things that I have discovered that enhance repair. Will be sharing information on my website soon,and anybody who has found certain things to be helpful in their recovery, please feel free to contact me on thathealingtouch@live.com
So perfect... I hear all the time, you look fine there is nothing wrong with u. Or they want to compare us ( survivors) to there world. They have no idea how hard it is to act all the time.
I'll add my own... You're just going through menopause. Really?!!! When you struggle with recovery, you become a stranger to everyone including yourself. The anger, concentration issues, sensitivity to noise and many other things continue to be a problem but everyone around you gets tired of hearing it and feels you use it as a crutch. No one who is stuck in this place wants to be here. If we could go back to the way things were before we would.
I had a sub arachnoid hemorrhage in 1988. I had surgery and am lucky to be here. I hadn't seen my Mother for quite a few years but my Dad managed to track her down when they only gave me a 50-50 chance of survival. I was in hospital for a total of 3 months and it was hard going trying to get back on my feet, literally. My Mother being her usual maternal self decided to come and see me when I had been back at home for only 48 hrs.Baring in mind what my Dad had told her about my illness the bloody woman walked in and said " oh I've come all this way and you look alright to me" needless to say it was a short visit and a long way home. But to come back to the point, it is sole destroying when someone says's that to you. Especially if you and doctors, physios, family and friends have got you to where you are. So if you can't think of any thing positive to say, don't say owt.
Further insights are shared here: -http://www.mylatentself.co.uk/shared-insights/you-think-i-know/
I suffered my TBI in 87, had extensive stroke rehab,but they really couldnt do much for the memory loss. One of the least favorite therapies I attended twice daily was Speech Therapy, so proving those negative Drs wrong I went back to College and became a Speech Pathologist...........so I could torture folks too :P. I dont necessarily take the 9 things listed as negatives: Yes I seem normal........ummm, IM NORMAL, I am handicapped. I can't do math and it hurts like a SOB to walk across a parking lot due to the crushed pelvis. I take every day like a gift. I can choose to love it or choose to hate it. I am not the same person I was before the accident. IM BETTER! I am one strong person. Most folks would not have been able to make it thru the things I had to live thru. I remember the accident daily since I have pain and migraines and seizures related to the accident so to the person who was told to get over the accident......ignore the stupid person who said that to you. What happend to you was a gift from God. You were given the chance to start over and live a life differently. You will feel the pain for the rest of your life, you will not always understand things that are going on around you, but you will always see the stupidity in folks who are so called "normal".
Very helpful, thank you for writing it. Love the easy to read list format. For more tips I recommend checking out this article as well: "What Brain Injury Survivors Want You to Know".
Why can't you say Think positively? 6 years ago my dear son had a car accident. It was 3 months of a coma and 3 months of rehab. If I had not been positive, with all due respect, they would have pulled the plug. He has frontal lobe damage and left temporal. However, as much as it annoys him, this old broad is glad and lucky he is here.
its too bad that people dont knwo more about how to acce[pt others with a bi . we are not aliens ,we just dont make sense sometimes. for me i guess i trey to isolate myself because i dont fit in . its not like we can say 'hi nice to meet you -btw i have a brain injury...
Don't take everything so personally. I have come to terms with my processing speed so I just say ya, I am.
I suffered a TBI back in 1988 and I still have ongoing problems with memory and getting things in the correct order. In spite of this I am a college student with a 3.8 GPA. A TBI is not like losing part of your memory alone, or not being able to talk to strangers or even people that you know because of anxiety. It is more unpredictable than that. Just make sure that your loved ones know this. If things were straight forward it would be simple but unfortunately a TBI is terribly complex, though not insurmountable. Be patient when things go badly, it is usually only a temporary episode, and know your triggers for what can cause problems.
So...what are appropriate things to say?
I think that another "thing not to say" would be talking to a TBI survivor like they are a child or some how incompetent. Another one is telling me a story about something bad in their life....like that mitigates the injury.
Thank-you for the comments, We really need to educate everyone about brain injury so it can be more understood. I have problems with a lot of Doctors. I had my heart Doctor tell me to come back when I get myself straighten out. I was shaking because I am very sensitive to lights and noise. We don't need to go to a Doctor and be treated with disrespect! Thank God I have a good Neurologist.
Thanks, I shared this on my FB page, because SO many people (even family members) should know this stuff...I gave you credit too;)
Yes, I\'ve heard most of these and \"Oh, I forget too, or I do that too,\" dismissals of my injury. It hurts to hear these things, because I can feel inside my brain where I can\'t get it to work. I wrote poems to deal with the hurtful things people say, to deal with the losses I suffered after TBI. Now I have a book out that is helping people find words for losses after BI and hope for creating a new life! Doctors are giving it to patients!! Sadly, I still hear these things. We have to teach the world about BI, so others receive the compassion that helps us heal from devastating losses.
I can relate as someone with brain injury to all most all of the 9 signes you pointed out in these artical. People "Normal Non Disabled just dont get it and i think at times dont even try to get it
The story of my life.
For every person who has had a TBI. Thank you soooo much for sharing your thoughts and feelings. You are right! We don't understand. I am a speech language pathologist who works in part treating TBIs and in addition had the trauma of my husband experiencing a frontal lobe TBI in 2004 and at times I still just don't get it. But as a therapist I try to help people find and do what works. As a wife and MOM I just try to love and be supportive. Please don't stop telling your stories. WE CARE and need to know. The anger has lessened and is still improving. The preplanning and hope has improved. The initiation is still lacking but my love and acceptance is growing stronger every day and I need your stories. Thank you.
I get those days, Oct 12, 9:50. I have nothing but love and Sympathy for my fellow TBI survivors.. My accident was back in 07\'.. seems like yesterday though, and it has impacted my career path, etc.. I am not everyones bestfriend.. people just don\'t get me, get pretty aggressive after angered while drinking, and have NO DIRECTION. I feel like such a disappointment! Stuggling to keep my head above water as I jump from job to job! Recently my boyfriends mother told me that I needed to move on from my TBI cuz it was only holding me back. She says that holding onto it is doing nothing for me and wonders where it will get my family, ugh! I took it pretty hard! Currently, not drinking much alcohol, waiting tables and trying to find a job where I can help others in the community!
I get angry when I hear "Make a list" or "Use Post Its." All it tells me is that they don't get it and I'm back at square one.
Great info. I\'d add #10: \"Everyone forgets things.\" There is a big difference between forgetting something and not remembering something because of a TBI.
when i was 11, i got hit by a truck 2 times(the same truck. i only remember waking up in a hospital, with no memory!. i only knew my father, not even myself. the tbi left a serious impact on my life still to this day i can honestly say it got the best of me. i wanted to play football when i got older but couldnt pursue it due to my tbi. it changed my life damatically and have no choice but to cope with it cuz its more than 10 years later and still have most of the problems, therapies only helped a little. i get migraines and seizures and its not fun. i would say the worst thing to tell a tbi patient is that they will be ok cuz when it all comes down to it, its not and people get angry for that reason.
This is all too true!
I suffered a TBI in 1995 and I got so sick of people telling me I was lucky to alive. I would think, "No I am not. I'd be lucky if I was dead because living with an injured brain is pure hell. You have no f!@#$%^ clue how s!@##$ this is!" Then I would be pissed-off and depressed, so DON'T TELL SOMEONE WITH A TBI THAT THEY ARE LUCKY TO BE ALIVE!
I have had two tumors removed and my ongoing symptoms is forgetting things. Probably more severe than I admit. I just do not let things bother me (most the time).
I have tbi and I have heard these comments so many times because people do not understand tbi. This article made me laugh because it is true. The only people who understand arethe ones who are educated about tbi. I have a friend who was educated by his girlfriend ( she works with tbi ) and he told me he had no idea how difficult it is to live with tbi. This made me happy to be understood. It feels good to have recognition for living with tbi.
Thank you! This article, and the comments are great!
Don't EVER start a question with, "Don't you remember?..." My family has worked very hard not to use those 3 words with me in the 16 yrs. since my brain tumor was removed and the 4 years since officially getting the "memory impaired" diagnosis.
My husband's brain injury was in 1984 this is still true today.
Also I would say memory issues are common to us with a TBI, and when we forget something a loved one might say, "Oh, I forget things too. Don't worry about it." Nobody's memory is perfect but a TBI survivor that forgets where he/she parks their car every time or always forgets the name of a new person this is an unfortunate everyday experience that causes us much grief. Don't try to empathize with a TBI survivor's problem if you have never had a TBI, it is demeaning and causes more anger and frustration.
Retpe it on a Word document and add it via a photo upload. I get these comments alot from my kids, they seem to forget that a Stroke is a brain injury and they know the answers to all of this, they were warned my personality would change and I would have good days and bad drays, but I know my good and bad ones and when to stay home and let things heal and respond to my own living kindness. Some times we don't believe we are lucky to be alive at that particular moment for a brain injury robs you of many things. It you are lucky enough to survive, you will understand those days that you feel like staying home and not opening the door . Some TBI patient's cannot handle a great deal of ambient noise or light.
I would love to share this on facebook, it totally describes what people say and have said to me, especially the "you seem fine". However when I try to share, I get the message that Java Script is not enabled. Is this a facebook problem, should I try later. I love the article so, I want to share it.