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

1. You seem fine to me.

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

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 (387)

My guy just got a TBI. Nurse said he hit his head and it appears multiple times causing his entire brain to bruise. He gets the hummingbird out today and maybe tubes out tomorrow. Tomorrow be 2 weeks since the initial accident anyhow he was trying to sit up but couldn't cus his hands were strapped to side rails and he was crossing his leg. They say he will never care for his self but I seen that and I'm more hopeful. He does not know me or his dad how long does that go on for? His memory will be hard to get cus for 6yrs he would remind me of stuff we have done. Dr.s I have seen, places we have went. I don't have TBI but he has always had enough memory for us both. How much does TBI people change. He was amazing, patient, kind and loved me like no one ever has. He has told me for 6 yes I'm the one he meant to marry and I'm beautiful no matter if I looked like hell. I'm just worried I will be pushed away by him and his dad He brang me 1300 miles from home to NM. I'm still only here cus his dad said he brang you here and wants you here. How much is gonna change?

Hi Ed, that was an amazing story! It really goes along with what I believe. I formed my ideas from reading books such as Richard Bach's "The Bridge Across Forever" and "One" and reading "The Education of Oversoul 7" trilogy by Jane Roberts. It resonates perfectly with these, especially the Richard Bach.

I was very disappointed the golf lady derailed the subject and continued to do so even after the host mentioned the subject had turned off topic.

However, I am glad that you mentioned the book by Dr. Eben Alexander and will order it soon. Have you written a book? I would love to hear more.

Hi. I've been married 11 years. My wife has had a series of brain injuries ongoing. I was working and became disabled. We communicate like D-Day sometimes. Its like the art of connection to someone with TBI is unique and method is not interchangable. With insufficient tools, a plier being the last tool- it strips a hexnut... and that is not the end. You can go for the hexnut, stop, cry, ache... there is no hexnut! But aggressivity and defenses build around what seems insurmountable to accept! One day is here- today.

I am willing to face the fire of the desparation but not today. Now I get Xmas cookies. I can use conversation and encouragement. I'm still getting my @$$ kicked by life trials.

I have a bf and he had a brain damage. He is always negative, blaming or accusing me all the time even I am not doing something. Like he got very jealous over nothing esp we are in a long distance relationship. He always think that I am talking to someone else even I am not. Sometimes he act like a child or immature. It is very hard to deal with him.

Belittling. Yes. I don't have a living relative who hasn't treated me as though I were a case of 'bad character' instead of pediatric TBI. And I know perfectly well that none of these useless people could have begun to stand up to what I've stood up to.

I noticed you commented recently. Thank you for that. My wife has TBI and I watched, aghast, as they most all would give her a bad time in front of me. Yelling and arguing. Then her parents each passed away. We both would argue over no big matters and that has lessened with acceptance of what cannot be SEEN... which is faith & love. I wish she said what you did about feelings. She cannot. You help me so ... Thank you

Just be happy you’re alive..

It explicitly says in the article not to say this.

Is there anyone really here, experiencing what it's like to be the mother of a 45 year old who sustained a TBI at age 15? I can't take another day! His behavior is so oppositional.

My 54 year-old son was 16 at the time of his accident, comatose for three months, shunt in brain, seizures, inappropriate behavior, anger outbursts; but the most loveable, sympathetic, empathetic human being with a wit and joy that puts me on the floor laughing.

Seizure medications can cause agression and anger, especially Keppra and Valproic Acid (Depakote). There are better drugs. If your physician is not helping, find another; even if it takes 20 years. Medications have to be selected with physical and mental disabilities in mind. Head injuries can cause intermittant brain swelling called encephalophy. Study the medications your son is on: all have side effects. Observe influences on your son’s behavior including posture, environment, food additives, diet, sleep patterns: they all give clues to help medical personnel.

AND get and keep ALL medical records, FOREVER..Hospitals and physicians do not have to keep them. State law will tell you how long. Keep results of tests, MRIs, etc.

There are many government funded services to help people like your son and your family. Begin with one: ask questions and seek help. You will open doors that I am just now discovering 38 years later...including this blog.

I wish I could fully identify with your pain and frustration. The things that no one else sees you go through are the ones hardest to handle. It has to be very difficult to have been a caregiver for so long. You hold so much hope for your childeren’s futures. I do understand the oppositional behavior. My husband sustained a significant brain injury in a tractor trailer accident last year. His behavior is so out of control when we go places that at times I just have to bring him home. He knows enough to know he doesn’t want to go to therapies or doctors visits but not enough to understand how injured he really is. He fights me at every turn and blames me for making him do things he doesn’t want to do. His short term memory is basically gone so after going though one of his temper tantrums he forgets why he has to go to therapy and we repeat the scenario again. So, no I don’t know how it feels to be in your shoes but you have my empathy and as much understanding as I can give you. God bless.

Hang in there, I'm just going to pick my 38 yr old son up tomorrow with severe TBI from motorcycle wreck,I'm on overload.So many emotions & dealing with so many other things.One day at a time is all I can say at this point.

I feel your pain. My grandson has TBI. Happened in 2014. He also had multiple strokes in brain after the extensive surgeries. He is stable now. He has a thrach and a feeding tube. He doesn’t talk or able to move past the neck down. He will be 22 this January 9th. We love him so very much and we keep praying for him. He does smile a lot and seems to know what we say and he recognizes those close to him. We encourage him all the time and look forward to his beautiful smiles. So very thankful to GOD that he is still with us.

Good Luck to you, make sure to take some time for you.

Guys, I need help, I don't know where or to who I should go for help. I got my first brain injury when I was 7 (I'm 18 now), I found out about it about 2 days ago. Basically, after my swimming lesson, I went into the showers with all the other kids and we decided to spray shampoo all over the place, being the little hyperactive kid that I am I put my feet on the wall and with all my might I push and slam with the middle of my head to the wall. I was unconscious for about 45 min - 1h and after was extremely dizzy and confused and didn't remember what happened for about 3 days. I didn't receive any medical attention, just my parents telling me to lay in bed and sleep it off. After the first one, I also had multiple falls off staircases in my school, hitting my head on walls, falling and also without knowing about the brain injury I thought it was all my fault and I'm just a bad person and what everyone says about me is right. I also have been drinking alcohol since I was about 16 (started after finishing 9th grade). Have a lot of paranoia, anxiety, depression, phobias, extreme social awkwardness, problems communicating with other people, problems maintaining any type of relationship, my vision is slightly blurry and I can see static everywhere I look, my ability to speak has also been getting worse, putting out words and telling a story is like a math test, I can't explain anything and usually when I start a story I end it in 1 minute because no one understands and I forget what I wanted to say next and I'm tired of living this life, I tried ending it all 3 days ago but a blackout from alcohol stopped me (I live in Tallinn, Estonia)

Please please please consider immediate medical attention and a Neurologist should evaluate you at the least.

Aleks, stay strong! Get some psyc help first and foremost. The first thing is to feel good about yourself. Go to hospital and tell them what you did three days ago trying to take your life. They will help you get on some meds and help with counseling. I am a Tbi survivor, also from age 7. I am 37 now. I have had many of the same experiences as you during my lifetime. Realize that you can and will be successful in this world! You are worth fighting for! You are strong or you would not have made it this far! Think of things that make you happy! I revert to my childhood happy days when I feel down. Close your eyes and put yourself there for a little bit. You will begin to feel the same joy you felt then I bet. I wish I could help more.

Hello. My son has suffered two major brain bleeds due to moyamoya brought on from cancer treatments from age 4 through 15. He is now 27 and recovering from the last bleed in May. He is a great young man but is extremely board. He has no day to day short term memory so returning to school or receiving training for a job seems unlikely at this time. I'm note sure where to ask or go to try and help him return to some type of life. He cannot drive anymore and socially really only has one friend left who visits and takes him out maybe once a month. I looking for help to help him what can I do?

Perhaps there is a group in the area that helps people with disabilities have a social life and /or maybe a church group or volunteer group may offer some respite care and socialization opportunities. I don't know where you reside, but you can look up places, there are advocacy groups and support through the DSPD, dept. of persons with disabilites and other groups for brain injury, etc. Though, not the same thing, I have a son with neurological challenges. He has static encephalopathy. His brain is not developing. He is 17 years old, and has the mentality of a toddler. He does not talk, does not write, nor read. He is highly energetic. There's a group in my area called Antanna's Vocational Services. They have socialization, residential, and vocational services for those with disabilitities. We have a support coordinator who works for Aspen Grove Advocacy in our area. My son and my other son (both also have autism, one is high functioning), go to there day programs. I hope you can find something in your area. a support coordinator/advocate can help you find what you need, regardless if they work for the government or are independent (which mine is)

I am from Iran.I had a very severe TBI 1.5 years ago. I was in coma for 4 months then I opened my eyes but I do not remember at all. At first I used wheelchair. Then I walked some steps. I did some exercises but I feel exhausted. I keep doing these exercises but I am very tired and fatigue. Here there is not a good knowledge about TBI.

These are very interesting comments. My son sustained a brain injury 23 years ago in a road traffic accident. The problems he has are because of this (all the things mentioned in aforesaid comments ie apathy, depression, memory etc.) It's not only very hard on the person concerned, but like ripples on a lake affects everybody in the family. You need the patience of a saint and to constantly remember that the person concerned does not choose to behave this way.

I'm a 52-year-old male that has TBI. I'm a year and a half post. My question is this:

How do you cope with this?
I have a terrible memory, there is no joy in my life, and I can't seem to put a day together (like clean my boat). I have so many notes that I think I make things worse.

I broke my neck and back when my head was crushed all at the same time. I'm all put back together — fused at my t-1 through my t-5 on my back. I'm very active and am trying to still make a living for my family but having great difficulty. My income is a third of what I normally make. I know things are different for me but can't seem to figure it out and this is causing me more grief. Any suggestions? I don't even know if I'm asking what I'm trying to say or not but if anyone has any info I would be grateful.

My son suffered a severe TBI back in June 2016. From the research I've been reading of late, aerobic exercise seems to play a big factor in neurogenisis and rebuilding connections. While it directly impacts motor areas of the brain, it also seems to help build connections between areas of the brain. Also, OMEGA 3's and DHA in fish oil also play a role, it seems.

Hello Brent. Firstly I am so sorry this has happened to you and while I know it won't be any help for you to know this, I am sincere.

My own husband had a TBI after a stroke over 10 years ago and I won't kid you, life is tough. There is no quick fix but there are things that you can do that hopefully will make you feel better about yourself. You talk about your memory. Brent, write everything down, what time you get up, what you have for breakfast, what you do after breakfast, etc. etc. Write everything down in a daily log. Refer back to this each day to remind you what has taken place. Make new memories and again log everything to help you make new pathways in your brain. Tell all your family and friends to help you with remembering things but not in a dominant way. Gentle reminders are good. Also, having a TBI, it is very important that you would get some professional help; maybe psychotherapy with an accredited person that would help you in some way, come to terms with what has happened in your life. I don't know myself Brent, but I had to get a psychotherapist for my husband and while it didn't make things better and it wasn't a magic fix, over time, it did help. We couldn't afford it so we asked family if they would chip in for the sessions and of course there are often psychotherapists/counselors who will give their time for free or at a greatly reduced rate. I don't know what part of the world you live in but here in England we have an organisation called 'Headway' and they are a very proactive place for people with TBI's to go. They really are amazing and help so much. Brent, I wish you all good things in life and hope and pray that you will get the help you need. I forgot to say that it must be very hard for you with your income, but listen when I say, you are amazing to be earning at all, after what you have been through. I so admire you. If ever you want to talk more, my e.mail address is choices8882000@yahoo.ie. Linda Keady

I am 4 months post. Still have major memory problems. When I try to explain my difficulty to friends, they try to make light of it and say "Oh, I always forget stuff, too." I hate that. It diminishes my problem. It also feels like they are distancing themselves and makes me not want to confide in them anymore.

Carol, have you tried telling your friends how their comments affect you? They may be trying to normalize the memory problem for you by joining in with it and not realizing how devastating it really is for you not to remember things. Letting them know how you feel may help them to understand your distress and how they can respond more helpfully.

I'm glad you brought this subject up about "oh I forget too" because I literally said something similar to my fiancée. I'm reading all of these comments to possibly learn how to respond when, in my case, I was being honest about forgetting. I didn't realize the frustration in comparison.

Be strong and I pray each day gets better for you!

My ex husband checked off all of those then told me I wasn't normal enough... so now we are getting divorced. My tbi?...Epilepsy since I was little and low blood pressure makes for a lot of run ins with the hard ground.

Add a tenth comment you should never say to a TBI survivor: "...Remember, (?) I told you..." I'm 6 years out from my major stroke and 3 years out from a 2nd, milder stroke. I have shared with friends & family how their innocent unthinking comment affects me and have offered alternative variations to them to get their 'point' across that sometime in the recent past I had been informed by them as to the subject being discussed.
Reminding me that my short term memory has been compromised does nothing for my self esteem, especially since, if given a little time or cues, I WILL recall!

I have a tbi and I constantly hear a variation of "You seem so normal," or "You sound like you're doing great communicating to me."
Jeez!!!!! Do you know how frustrating and infuriating that is?
It's like when they used to tell you crap like "You must have alot of girlfriends," or the infamous "You must be a heart breaker" when in reality you can't even make a friend due to the inabilities brought on by your TBI.

I am a father with a TBI, it's been 43 years now since my stroke at the age of 18.
In 2012, at the age of 17, my daughter was in an accident and suffered a TBI.
Can anyone relate?

i can relate to that! i was 17 (in '83) & i was a passenger in a car accident. im 51 now :/

My mom has suffered a brain injury April 2015,
I'm still dealing with the after math of it. Although she's high functioning, there's a lot of things she'll never be able to do again.

I am at 18 yrs since my abi and most of these problems are still present insomnia memory loss irratbile life goes on!! Tim

My favorite, at work, by a guy who knew of my accident. "Don't be retarded about it." About materials used at work. I think he felt bad, cuz later came by to help me with something else, something he never does. I didn't mention the owie he caused. I didn't know how. Two years post accident. At least I'm working, pretty good at it too.

My current favorite is "That's not very mindful of you." As a Buddhist there's not much which I take personally, but that one cuts me to the quick.

Just an FYI for caregivers-watch for loops-being caught in a cycle of repetition that leads nowhere. This is extremely frustrating and would be nice to have this pointed out, because most times we don't see it. I saw the above comment and had to add. I get stuck in a loop all the time. As a matter of fact that's exactly the word I use to describe it. My poor husband takes the brunt of it and I don't know how to stop it. I see 3 different doctors now. I'm over 3 years POST TBI and I am straining our relationship. How do you stop the loop??https://babyishcare.com/kids-bow-and-arrow/

Thank you all so much.

I've had my tbi 5 years now.

People just won't get it.

Even those who are close to me.

“Why are you so hysterical” -my brother-

“Are you drunk?” - my dad at 10.00 a.m.-

It’s sad. It hurts.

I love the way you write. Its very different. God bless you.

I invite ALL who have passed judgment, not provided adequate medical or psychological care, accused previously high achieving, intelligent & competitive athletes of malingering, to live for ONE week with their economic means permanently removed, inadequate social & family supports, no restorative sleep, adverse effects of medication, loss of self identity, possibly homelessness...etc, etc.   and see how it is.  As a former medical provider, now a TBI patient most people would not even BELIEVE how we are treated.  My heart goes out to all of us, told we will be better if we accept everything and "move on."   Move on to what exactly?

Well said, I read your post and thought finally!!

Thank you

I would like to add #10 - any statement/advice/criticism that starts with, "You just need to...".  I have come to hate the word "just" and all that is wrapped up in it: simple, willpower, determination, self-discipline.  Nothing is a "just" for me anymore.  Nothing is simple.  Nothing I have difficulty with is the result of a lack of willpower, determination, or self-discipline.  However, it seems everyone is completely unaware of the hidden message of "just".  What is simple for him/her and used to be simple for me no longer is.

Thank you all for posting! I have been feeling the same way since my TBI in 2008 and really do not understand why I look like I am fine and at times can be active but later I am in intense pain without my medication I would be living in constant pain. And everyone hates me these days because I am not up to their standards nor do they care that I been injured. It's been hard thanks again for posting.

I was in MVA 8 years ago, it took nearly 2 years for my cognitive functions to improve enough that I could make it through a job interview successfully although once landing the job it took several more years to develop compensation techniques like keeping a log of everything I work each day, phone conversations etc to help with my memory issues.  After 8 years I still have difficulty concentrating at times and become exhausted from concentrating too hard or too long.  If it weren't for the personal relationship I built with my employer I'm quite sure I would've been laid off.

Recently some new issues have developed that have greatly impaired my ability to work, over the last 2 years I have rapidly developed a connection to the weather that causes my tbi affects to flair up.  The same MVA I hurt my knee and developed arthritis.  The best I can explain what has been going on is basically arthritis in my head/brain.  When it is cloudy/rainy/humid I feel excessively fatigued and often oversleep and will need several hours to feel coherent enough to shower and get ready --- leads to an afternoon arrival at work.  I will continue to feel groggy & slowed mental processing, I hear myself on the phone with clients and I struggle to put together my thoughts and have difficulty articulating well.  I may simultaneously have a migraine or I could just stay in this limbo for the next day or days until the weather front moves out.  My light sensitivity has also increased dramatically during this same 2 year time frame, the weather also heightens it but it exists all the time, I live in sunglasses.  Working in an office the light from the computer screen irritates my eyes after several hours.  The combination of fluorescent lights and the computer screen are unbearable and cause painful migraines, I had to bring in a tall house lamp for my office but most of the day don't turn on the lights at all. However my work requires me to visit clients and sometimes work onsite where I don't have control over the lighting.  God forbid I'm scheduled to see a client during bad weather-- I won't be able to show up until the afternoon and my concentration and ability to answer questions coherently are greatly impaired.  Somettimes I am so dizzy and disoriented from the weather that I am not comfortable driving.

I recently went to see a neurologist but she couldn't grasp that I have a connection to the weather or that half the time I have the fatigue, light sensitivity, dizziness but they wont be followed by a migraine.   The only meds she prescribed are to prevent and treat migraines --so far in 10 days no migraine but there's been 3 days of overcast/rain and all the other symptoms continued to persist despite the medication.   

Does anyone else on the planet have a similar reaction to the weather or am truly the medical oddity the doctors seemed to be perplexed by?

its the barometric pressure change

I also have extreme fatigue post TBI that seems to be weather related. My issues are worse when it's hot out. It's been 20 years since my MVA. My biggest struggle is how easily I get frustrated and cry. I can cry at the drop of a hat. It's hard to be professional when I can't control my emotions. True to talk to my doctor and she says, " everyone is like that."

Hi - I am 16 years and I also have strong weather-related issues. You are not alone. Doctors ar enot educated about brain injury. Google emotion after brain injury or emotional lability after brain injury or something like that, find something that points out what a big problem it is and give it to your doctor!

"Was your brain injury self-diagnosed?" -- This from a psychiatrist.

Read your comment about being 16 years post & feeling like you're getting worse. Me too (I'll be 17 years post in June). I worked (and struggled immensely) for 15 years until a seizure. Now I don't work, but I get v easily stressed, forgetful & aphasia starts creeping back in. I was hoping it would all become easier with no work, but I guess I'm still reaching for the acceptance I thought I'd achieved... All the very best to everyone living with TBI 💚💚💚

I don't know where I am at with this brain damage but my doctor told me today that I need to buy a helmet so when I black out I won't cause as much damage to my brain as I usually do and also so I do not go blind

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