9 Things NOT to Say to Someone with a Brain Injury

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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.

The "all your medication is the problem" is the one that gets me the most.  I would not be able to live if I didn't take it.  

It is so good to find out that others have been through the things that I went through.  

I have a friend who has a TBI injury 30 years ago. I definitely see signs of apathy memory issues motivation and coordination issues. His family is in denial. They think he can go out and get a regular job like a regular guy. I don't see this ever happening. He is very good looking man and is on SSDI. BOTTOM LINE. ..They don't want him as burden. . Even though family has lots of resources. Any suggestions or anyone relate to this.

Number 7-9 are so much more relatable to me than any of the others, and I've found myself repeatedly saying them. I've very recently suffered a TBI, and whilst my bones and physical scars are nearly healed, I'm now starting to suffer with the reality of my TBI. I often find myself in tears from fear of what the future holds for me, and how much I will or won't recover. It's easy for people from the outside to say 'things will get better', because of how quick my physical recovery has been, but now I feel as if though they think I'm fixed, and am just putting on this 'act'. I feel a lot of the time they say the things stated here as they're either bored of hearing my moans, or because they think it's because I want the sympathy. I feel that finding this website this afternoon is going to be a big help in my recovery, people feel the same way as me and it's reassurance that I'm not making things up in my head

I totally understand your frustration i recently suffered a concussion through a slip while out running but was put into the brain injury box which is frustrating and in my view does not see the person but only the tick the box things that cover others.

Don't ever lose your own sense of worth and dignity you are not making things up and you will have a future its very different for the individual who is going through the process i got a nine page document with the most horrendous "things that you will experience" by bullet point which i took great pleasure in shredding but not before it had got me really upset.

Keep positive my friend don't let others drag you down.


Great list, though I do not personally like being told I am strong or brave for having survived what someone else did to me. It does not take strength or bravery to survive a mild-traumatic brain injury, or to live with a stutter, cognitive issues, sleep deprivation, mood swings, headaches, tinnitus, or the back injury I sustained at the same time; all it takes is for someone to not look both ways before driving their car across the highway and into my motorcycle.

Instead of calling me strong or brave, just acknowledge a preventable thing having happened, and the associated permanent injuries have changed my life forever. I do not want to be brave or strong, anymore.

I am 17 years old. I've played contact hockey all my life and got hit in the head 3-4 times average each game. At first I didn't have any signs of brain damage but through the years I have 70% of symptoms (irritable, forgetfulness; more than the average person), concentration issues, insomnia, anxiety, depression, headaches that get worse, sudden blurred vision... the list goes on but I cant remember them all. And I think the worse of it all is that all my doctors are brushing it off as its all in my head and there's nothing to do about all these problems as my grades at school have dropped so much I fail all my classes... even the ones people take for an easy credit.

i seriously don't know what to do anymore.

You'll want to find a place that specializes in neuro rehab. Depending on the severity of his accident, there are inpatient neuro rehab hospitals across the country that provide 3 hours of therapy a day while also providing medical and nursing care. If the accident is less severe, there are outpatient physical therapy centers that specialize in neuro rehab for speech as well as occupational and physical therapy. You can start my googling neurological rehab centers near you. Or, if his case is very severe and he wouldn't yet qualify for a rehab hospital, long-term acute care hospitals offer a lesser amount of rehab, focusing more on medical needs. If his insurance won't cover that, you'll need to search for a nursing home that offers rehab services. Hope this helps.

I have a friend whose boyfriend was in an accident, and she texted me to see if i could help. She says that no one in the hospital wants to work with him. She didn't tell me why. So she asked me if I could get information and maybe try and help him with his speech. Can anyone recommend anything that might help? I'd be grateful.

Have his doctor make a referral to a speech therapist. Not only do they help with speech, but they help with memory and cognitive functioning. Watch YouTube videos on neroplasicity. Call your local welfare department and tell them you need a social worker and a care giver. Google local TBI/PTSD support groups. If you live near a college see if they have any programs. Ask your family doctor to make a referral for a neuropsycologist ... that's different from a neurologist. Hope this helps.

It's been 3 years since my very severe TBI from a car accident in December of 2013, or so I'm told. I was serving on active duty in the Air Force and somehow went off the road 1/2 mile from my house and hit a tree on the way home from work after a 12-hour overnight shift. It was the kind of accident nobody thought anyone could have possibly survived. After being airlifted to the trauma center and weeks in the hospital I finally started to realize what happened. I had Post Traumatic Amnesia for 6 weeks. That period is so difficult to understand because I have no memory of it at all. I was conscious and even recognized people and could talk to them, but I couldn't retain any new information. I don't know how many times my family had to explain to me what happened. My TBI at least made me immune to the pain from my broken leg, foot, chest, ribs, and collarbone. Once I was able to start remembering again and move to the rehab hospital, I finally realized the issues my injury was causing. I had a lot of trouble thinking, remembering, moving my right side. To this day, my right side is weak, and my sensation of feeling is very weak. After 5 months in the hospital, it was finally time to go home. Back at work, it was so strange, people were shocked to see me walking around. They heard I died. It was true enough that my supervisors weren't sure I'd pull through in the first few weeks. After 3 years, I've come to the realization that my right side issues are permanent. I go back and forth between feeling lucky to be alive, and so angry that I still have disabilities from my injuries. I had to be retired from the military from my injuries and to this day feel so strange that I'm actually a disabled veteran now. I wish more than anything I could go back and stop this from happening but then remind myself that I just have to move on and adjust to my new reality. It's frustrating because people have no idea that anything is wrong with me; I can talk, walk, do most everything. What people don't realize is how hard it is for me to actually do those things. I've explained to people that yes I can take a dish from the dishwasher and put it away normally, but when I lift that dish, it feels like it's 50 pounds to me, it isn't easy at all. I'm so grateful that I can do everything that I can do, but frustrated with how hard it is to do it. 12/20/2016

I had a stroke 2 years ago at the age of 33. I have aphasia from the stroke among other things. I had to learn how to speak and use language all over again (well enough to fake it to make it). Nobody knows anything about what I go through on a day to day basis. Whether it be trying to clean house (never seemed to irritate me as much or take as long, what was I saying?), oh yeah, calling to make appointments (wow people are rude), getting ready (see ya in 3 hrs; and I might need a nap after), figuring out what to cook for dinner (it my brain hurts among other things), oh the list goes on but seriously I can't remember. Everyone thinks I'm stupid; hell half the time I'm convinced of it too. It's a struggle every day. My husband no longer wants to spend time with me because I forget stuff (I'm still cheerful) he says I'm too annoying. Well, thanks! I'm all alone and I almost forgot I have 2 teenage boys that hate me. Everything has changed for the worst. No one makes it any better. Only worse. How the heck do people make it through this?

A neurologist once said to me my mild closed brain injuries were "Water Under the Bridge".  As if brain injuries just mean nothing over time.  I found a study on football players (of course they are getting all of the attention) that I think the white or grey brain matter continues to break down years after the injuries. Another worthless nurse once said MRI and CT scans can pick up all brain injuries. I hate needing to turn to the medical establishment when I encounter medial so called professionals who don't even read any of the latest literature on the brain.  It is shocking to learn how much doctors are not taught and will not learn on their own. 

I am just convinced I need to "fake it til I make it" for the rest of my life, and apologize a lot for the mistakes I constantly make that I can't even remember happened. No one cares, no one is supportive, no one even believes me, I am a burden to everyone, and no one is going to help me out but me. So I just have to do it. No one is going to hold my hand or tell me it will all be okay. They are just going to be annoyed with me because they think I am mean, rude, dumb, and think I don't care and that's that. My sincerity will just be my solace, not meant to be recognized by anyone outside of myself, just known to myself as the truth I have always lived. So now I know how it is for stupid people: not much different than having anxiety as a smart person was, but with less data recall. Invisible disabilities really suck.

Maybe this isn't the right place but I have nowhere to turn and ask I can't find anywhere else that I can post to but It's been one year since my injury I was hospitalized for a long time after and now since the anniversary date of the accident I keep waking up in the middle of the night at the same time that I used to in the hospital and can't sleep at night again. I'm really feeling in so many ways the same as I did before can someone please help me and tell me how normal this is?

I got a moderate TBI 10 years ago  from being electrocuted and falling off a ladder at work. I've been on all sorts of medications and have been in therapy. Before the accident the world was my oyster, so to speak, but now the world is just a some weird place I'm living in. The first 5 years after my TBI  were most especially difficult for me because of my bouts with depression, suicidal thoughts, panic attacks, night terrors, and delusion thinking. The last 4 years I've been struggling with a gambling problem that may or may not be resulting from my TBI.( Some studies I've read suggest it does. I looked up the Iowa Gambling task and the Somatic marker Hypothesis). I tried to go to school (community college),but found it to be to difficult to learn. I was taking about one class a semester. My concentration skills  are messed up. But what I want to say is that when people say these 9 things to me- and they have- it doesn't bother me for several reasons. First, I don't expect them to understand what I'm going through because they haven't gone through it. Second, I understand that they are probably just as upset with my condition as I am. Lastly, I understand that in most cases they are just trying to help me get along in this world and help me to survive and maybe get better. And I appreciate that the people who are still in my life today, are treating me like they would treat any other person who "didn't" have a TBI  that acts the way I do when I with them. I find it better to be treated like some one as an equal instead of being coddled too because of my shortcomings.

I used to have such girly pretty handwriting before I got sick. Now I write like this sloppy manly chicken scratch. Its the only visible sign of me having a traumatic brain injury unless I'm having a trigeminal neuralgia attack. Life sucks after illness and living with an illness. I'm an obligation and a pity party that I don't want to be at anymore. I'm so over this sad excuse for a life since I got sick. I had the perfect life before. Now I'm just... existing.

My hand writing has gone to hell... I always feel like I'm existing without purpose... It's impossible for me to feel like someone/anyone is listening to what I say/mean. More often then not I say "yes" to avoid that awkward feeling with people that are normal. Everything in my life takes effort! I barely got through "I'm not a robot".

Yes. This is so accurate no matter how long it's been since the brain injury. Some days I feel myself going forward fast, and some days I can't remember if I've changed my babies diaper recently or not. OH, and eating, I don't feel hunger or fullness like I used to or remember what I've eaten or when. I have to write down what and how much I have eaten. My brain injury was at the end of 2011. I still struggle daily with it. Sleep deprecation makes it 10 times worse, but with two babies I have to deal. Thank you so much for addressing people with brain injuries.

ain't that the truth "think I forget on purpose"

I was told I may not wake up, if I do I could be this that and the other. Yahoo I am still here today suffering common problems Arthritis Pain etc. But things could be worse I could have been dead. And my five beautiful children to 3 mothers wouldn't be here. My brain injury is a disability but no one can see that and I cope with it well. I pray to one true God threw Jesus & that is my answer cause he hears. I am not here to preach just to mention what works for me in coping.  Thanks for all the great input from all.
Be HaPpY. From Lewy

I hate living with a TBI. It's been 12 since my car accident so everyone assumes I'm just grouchy or having a fit. Or if I'm aware of it I can make it stop. But my girlfriend doesn't understand there's nothing to stop. It's not something I have control over. I try and read what I can to understand what others are going through but it still doesn't mean that I can change where I go. I mean I try because I hate being out of control but it's not a button I can turn on or off. Then she gets mad at me and stops talking to me and it just makes it so much worse. When that happens I start to feel like I'm already dead inside. I just need someone who understands I'm really trying and need to talk about things and not burry them. I just don't know what to do anymore.

My brain injury was so bad the doctors thought I'd never wake up, then I'd never talk, then I'd never walk, then I'd never breath on my own again. I overcame so much, I even had amnesia for two years, reoccurring too. But I overcame it all. But now, now everyone just thinks every time I say I forgot that I'm just being lazy and I don't want to remember. Because I overcame so much they just think I'll be fine, I'll be normal. They think I forget on purpose or I'm not even trying. I hate this, it's been years and I'm lucky to even be able to walk ! But they just keep pushing me every time I say I forgot they roll thier eyes. I really feel like sometimes the coma was the easy part of this all.

10"x 25' long oak limb fell from 30' up on me in my back yard, nurses said I was lucky; all I could think was, no I'd have been lucky if I watched the limb fall from a safe distance.

I had a stroke when I was 35 and couldn't walk or write and couldn't remember anything I did a lot of therapy to be where I am today but my brain is not the same I have tried to explain that to some people and they say your fine it is all in your head, the stress, the depression and anxiety and when I say "no" to social things I get pushed into it and it makes it worse. I was with a friend and her daughter today that I haven't seen in 2 years and told me about about this website. She was understanding of the way I think and saw to it that at the end of our visit that I was laying down. She said, "your brain is tired and it needs to rest from all the stimulation." It was the best thing I ever heard. She got it. Nobody else has ever said that to me. They would just say "you're tired? what is wrong with you?" and the part that she said about "it was the stimulation" was the best because she has read all about it!! I have been reading all the stuff from your web and feel very relieved that I am not crazy and/or I get what's wrong with you why are you in bed I have it way worse than you and your so disorganized just get organized!!! I felt when people say that it makes me feel worse. I work hard or as hard as I can and try to raise a family at the same time. It is way harder than it ever was starting something and going to another and not finishing any of it because I get to confused. I wish everybody's friends and family members could read your web pages when somebody has a brain ingury. Like it said in your article: that I may look ok on the outside my brain is not the same. I just have to thank my friend and her daughter for them coming over today and showing me brainline.org it is the best I have ever read about thank you 💜💜

I had a stroke 14 years ago and I find myself repeating things. I am on some pretty sedating medications. I feel stupid, even though I completed a Master's degree post stroke, got married, learned to walk again, drive, have taken up latch-hook and macrame and adopted two new pets. I wish I knew what was going going on. I am a lot more obsessive than I was pre-stroke. Did anyone else have this problem?

Wow! Thanks for the sharing. I have a 30 year old son with 2 TBIs. (Two different traumatic accidents.) Hearing your experiences and honesty helps me understand brain injury better. God knows I was blown away at how catastrophic brain injury can be. Best wishes.

Dear reservist in Florida: Thank you so much for your courage and persistence and for helping us all by sharing your story here.

I tried a spiderman trick off a rope swing on the river. Did it 3 time correctly. Then my hands could not handle it any more and let go prematurely. The water was 18 in deep. I cant walk right. I cant speak right. Memory sucks. Vision slightly worse. Loud prolonged noises bother me real bad. I get scared of sudden noises a lot more than i used to. My body feel like how a wringed towel looks. Sleep is bad. don't dream too often. I wake up confused and like my body is made of clay. I feel devoid of "spirit". I live alone. And have for sometime. Temps inside my florida home get suffocatingly hot and sometimes cannot even get up to turn on the air conditioning or a fan.I don't think i feel paralyzed.  Haven't even touched my guns since it happened. (I enjoyed them so much I would go out of my way to clean and work on and provide necessary supplies to people free of charge). I was raised in a volatile, pessimistic, patronizing, parentless environment. Ya probably know what that can do to a person. I was in the army national guard. It didn't pay much. And the 125 mile commute to ocala. Took a lot out of me. The closest "coworker". lived 85 miles way in jacksonville. I was the kid who sat alone. And did not have or the opportunity to make money growing up . So i didn't turn water into wine. Was homeless for all but 2 months of my 3 year career. I wouldn't talk about anything because honesty is a weakness. So none of them knew. I would miss drill here and there. I couldn't use my situation as an excuse. I was counseled on how i need to know my limits. I tried to compensate. They wont let you join with congenital scoliosis. I caught some hassling for collecting all the unused stuff from eveyone's MREs. I said i needed stuff with long shelf life for a bugout bag. Everything was harder for me. I got kicked out for unsatisfactory participation. Still haven't told anyone about my back or head injury. Haven't talked to or emailed anyone. The only social interaction i had with others was when i went to drill or checked out at a store. Never had friends, male or female growing up. I Feel like castaway.

I've been brain injured sense 9-07-88 , my skull shattered into my brain in Mass General hospital they removed all of my commonsense, parts of memory, parts of speech, parts of behavior, parts of motivation. yes I look fine and yes it takes about 10 years when you start to almost feel normal! But even my wife is like "you're lazy" but my mom she goes to bat for me every time, she was in the hospital when I got there September 7, 1988 - December 21, 1988 every day and when they thought that the doctors would need to remove my left eye, mom offered in the mass General to give me her left eye but they informed her that they do not handicapped one to help another!

Sub arachnoid hemmhorrhage Sept 14 Cognitive problems persist, attention and memory amongst other things. Difficult to live with

My TBI was in 1993 I was 15 . I suffered subarachnoid hemorrhaging and right thalamus brain damage. I am 39 now .can you please tell me more about the affects on your life now . I feel many different ways emotionally and physically attributing them to other things age, stress, etc . Maybe direct result of my TBI if so my focus needs to be shifted so my quality of life may improve

My heart goes out to everyone here. I have had two freak accidents that left me with brain injury. And I can relate to most comments. Only God has given me hope to go on. This type of disability is worse, people cannot see it, and if you tell them, they forget or do not understand. Heck, I don't even understand it. :( Thank you for all your comments. It helps.

god bless you for your balanced view i just hope that somehow there will be an answer to the way people view brain injuries and understand those who have through no fault of their own been afflicted.

I have a TBI injury & it is a life changing event you don't want to have. Your life is lost in fighting all the associated problems that comes with a TBI injury. I have a "closed brain injury" & every day is another struggle to get thru.You feel that there is no purpose in life & living on drugs is pure hell. The signs of TBI aren't transparent & you have to have a basic understanding before you can began to understand the challenges we people face each & every day. It drains every bit of life out of you & you have to try to stay the course to get better & overcome this deadly injury. It's like being on life support each day.

I have had almost all of them said or done to me and I think I am emotionally strong considering that I just went through an abusive relationship before the head injury.

My heart goes out to you people having such a difficult time. I wouldn't dream I saying any meaningless things to victims of brain ops. It is a tough time. I suppose the bystander wants their old mum or sister or brother or or whoever back the way they were. It's a mixture if frustration and fear. Wishing you all the best.

I have had every one of those things said to me except "let me do that for you". I was told by my doctor that "your just getting old". Today I was with a friend and they said that I was just letting fear get in the way (I have a TBI & PTS) and I need to just go out and get a job and quit limiting myself and think positive. I am now a mess and trying to stop beating myself up for being a negative and lazy person. People have no idea how damaging their words are to those that have no support system. Now I'm trying to dig myself out of depression. TBI has taken so much and it is difficult enough because I was a very motivated positive person prior to my car accident. I lost my job, receive not income or disability, in the process of losing my house and the advise I get is "snap out of it".

I totally relate to that comment. It's been two and a half years since an 80 year old man fell asleep driving crossed two yellow lines in a curve and hit me head on. My brain is just one issue. Since the accident I have dropped FOUR friends who don't and won't get it. "You need to focus on your kids and getting back to work". " you're fine". Hurtful and right now I don't need that negativity in my life. Living life is hard enough for me after spinal surgery with spinal plate fusion broken ribs lots of other surgeries and never knowing if I'll ever be me again.

My issues after TBI are primarily inability to function.  I cannot pay bill, the process of it, online or the old school way.  I cannot keep the house clean because I get overwhelmed, distracted, and fatigued.  I cannot negotiate the demands of relationships, the pressures from others to be Mary Sunshine, "get over it", and to "be normal"; and their anger,coldness and punishing behavior increases the level of my symptoms more than words can say.  I am seriously considering leaving my marriage of 31 years.  It has been 10 years, and my husband's anger towards me when I fail to live up to his expectations has evolved into my being on the receiving end of verbal abuse, emotional abandonment, and an overall condescending and cold manner towards me.  I am on medication to control the personality changes that caused me to feel anger and act out in ways that were God awful.  I have worked my butt off to become a person who does not act out in that way. If anything I am more controlled now than before TBI.   Now HE yells and screams and acts "bat shit crazy". Does anyone else have family that is angry 10 years after the fact.  I feel so helpless and sad that I am in this spot after decades of marriage.  Ugh!  I have to make a choice, stay in an environment that has made my functionality get far worse than it was a few years ago, or get out.  Has anyone else had to create a new life after TBI?  Being 56 years old does not help.  BTW, I cannot work, due to cognitive impairments.

I really get tired of my family ignoring it and tell me everything is fine. It has been over 4 years and I am not the old me before brain injury. My head still hurts on the area of impact. I still carry many of the symptoms and my family thinks I am going back to work to make them money or I can take on the world like I use to. It just is not in me any more.

I played football for 9 years, from 4th grade all the way through high school. I'm almost 50 now, and I find myself mad all the time. I do remember in high school hitting helmet to helmet and losing all peripheral vision. Xanax has helped for the last 15yrs. But getting worse. I love football, but if it steals your brain, it's not worth playing.

May I add another comment NOT to say to someone with a Brain Injury? Before my accident I had excellent language skills, speech, writing, it was my forte'. Now I have to rewrite this post numerous times just to make it coherent (I think :) maybe).  If I comment on my problem with language skills or memory mostly...my sister comes back with "oh yeah,  I am just like you."  Or "Oh yeah, I know ALL about that.  I bumped my head a couple of times too you know."  I don't mean to sound snarky but I know she never had a brain bleed nor even complained of a head bump.  I know she is trivializing my injury for whatever reason, it just makes everything harder when it has been years (9) and I still have moments when I realize I have lost another part of me.  I don't want sympathy.  There are very few who even know of my TBI, but for my personal relationships it would be nice to just acknowledge I have a problem with this or that and not be made to feel like I am  just seeking attention.  Sorry.  I did not intend this to be a personal rant.  Maybe just some advice on how to respond to her, what I have tried so far hasn't worked.  

I hear half of these from my family my anger makes me need to stay away from them. I am tired of trying to educate them. I am not the same person. I am different and a new person is evolving and taking care of myself needs to be first.

Wish more people would read this column

You can still have a good life!   and my reply now is (to myself) Up Yours!

I hate it when loved ones tell me that one day I will wake up and be all right.

I really don't know what to say. I haven't had a proper diagnosis in 5 years. My neurologist wants to put everything that has been wrong. With me as a result of an autoimmune disease. I have been telling him for years this is all a result of a horrible fall, I didn't realize it at first as my symptoms were not immediate. I know what you all live with. This is the first time I've ever written in any forum. I suffer from a vestibular disorder, lived basically in seclusion as going out on my own was impossible. There hasn't been much information given to me by my doctors as far as what I should or should not be doing. Now I have the scat bus which helps me to get around. Family has not been very understanding, often saying ridiculous those. I just laugh at naive people. I feel people with disabilities are better human beings. We are more compassionate and understanding. Be true to YOURSELVES, do whatever you have to to be as independent as you can be. Its important to try and educate others because the one thing you have that they won't have is knowledge of the unknown. I often tell people I don't like to repeat myself. A person is either for you or against you. I don't have time for the ones who don't get me or don't care to help me. I do as much as possible on my own, when I ask for help it is needed. A lot of things can be relearned. Do not allow the closed minded to close your mind. We may have problems however God has chosen is for a higher way of thinking. Be the first to help someone in anyway you can, you will feel better. A simple smile and act of kindness goes a long way. God Bless

I can relate too. I had concussion and post-concussive syndrome after fall from aerial arts apparatus. I was horribly misunderstood by my company. My director said I should choose safer activities. My manager was very punitive. It was obvious that they did not think the symptoms were real.

I just got hit with a tire iron a month ago I am telling the hospital I lose focus on what I am doing I can be doing something mind goes blank to me not normal what can I do to help my memory do I get answers all I get is it takes time this is normal... and it's just pissing me off