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

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

Comments

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.

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

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.

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.

its the barometric pressure change

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.

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 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.

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?

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

Thank you

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!

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

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 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.

Billy

I chuckled when I read this,,, I am 13 years post...About not leaving the house and avoiding big groups of people. (I am that way too)...and so I know what you hear all the time"You just need to get out of your house! My disabilities are most similar to someone that has had a stroke..(left sided deficit ) so yeah I have a limp. and my left-hand hardly works

You MUST tell someone! There's nothing to be ashamed of.

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.

I am so sorry for the horror of it all. Please, PLEASE get into counseling! I know this may be hard to understand, but your entire family has gone through a horrible tragedy. From the sound of it, your little sister and mom may be struggling with memory issues and mood swings. I can say that the worst, absolutely worst thing that can happen to any parent is losing a child, not to mention two. Then having other children seriously injured.... your mom needs help going through this. I can't imagine how she's NOT having a complete mental breakdown. Without a doubt, your family needs to get into some kind of family therapy. Please let me know how you're doing, OK? birminghambetsy@gmail.com

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."

Please, please seek some professional help with this. Maybe your wife and you can go together. Have you told her all of this? Has someone explained to her how TBI' can affect you? You say you don't have insurance. Not sure what state you're in but in Texas we have Department of Assessment and Rehabilitation Services (DARS). It is a state program specifically for TBI and SCI patients. Maybe your statenhas something similar that can help you get the help you need. You have a purpose. It may take a while for you to figure out what that is now. Praying you find the answers.

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 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?

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?

"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

I am 21. When I was 19 years old I had my severe brain injury. With two different bleeding spots on my brain, temporarily paralyzing me, breaking my ski helmet, 3 months of no memory at all around that time,and literally smashing my cheek and nose inward. All of these statements are so true. I absolutely hate it when anyone makes those statements to me. I'm constantly being yelled at by family, coworkers, bosses, and everyone likes to act like they understand. No one comes close to understanding what it's like to basically jump into someone else's body.

16 years for me and I feel as if I'm getting worse. Memory has not gotten better and I'm getting where I won't leave the house unless I have to. Don't like being around more than a few people at one time and when people ask me random questions I get lost. Accident was 1/21/2001 age 19 and I get so frustrated when everyone thinks I shouldn't have any problems since its been 16 years. I hate,"oh come on it's been years you know your memory isn't bad anymore" and "well everything should be better you look great."

I had a head injury in 2012. I had a plate put in my forehead because a the bone was pushed in so far that they couldn't pull it out so to keep from having a dent in my head they put a small 2 in by 2 in titanium plate in my head. I was Mgr of a sales team, made good money, and was the most motivated guy almost anyone knew. Since my life has fell in the gutter. I can't even remember what I'm saying sometimes, I leave doors open, misplace things, have become lazy, can't follow through on anything that is important, can't keep a job, lost friends, have anger outburst, and can't have a relationship. Yesterday my wife told me that our relationship can't continue until I get my life in order and that I emotionally drain her. I've asked her to help me by writing things down and to please be patient. She's so frustrated with me. I can't say I blame her. I'm twice more frustrated with myself. Well I agreed in conversation we had to do better and had all intentions of doing so. But I couldn't get out of my head how hateful she is towards me. In the last few weeks she went from loving me and being sweet to acting like everything I do repulses her. So my mind started wondering. I had a suspicion that she has found a new man that has things going for him. One that doesn't have so many problems. So I did what I shouldn't and looked at her phone. The first thing I noticed was in her phone there was a text from someone named "Slug." When I looked at the text I realized she had saved me as "Slug." This broke my heart. I never have felt so low. I already think of suicide on a daily basis because I feel like a waste. I feel I'm always a burden to people. The way people talk to me now: I'm "slow," "what's wrong with you?," "its your pills," "you make excuses," "you just want to live off others..." If you really know me,  then you know that I've been taking care of myself since I was a kid. Now that I know my wife thinks so lowly of me I'm trying everything possible to not take my life. But it's hard. I never thought she'd be so rude and mean. I don't have any kids of my own. So I feel I serve nobody on this this earth no value anymore. I don't have insurance so there is no cure for me. So be nice to people weather they have head injuries or not. I love her unconditionally. But I know how she sees me now. Ever since she got this new good job. She has down talked me when we fight. Now we're over until I get my life together. I'm trying harder than anybody will ever know. JAG

I was in a head on collision 6 weeks ago. One ton chevy doing 65 ran into me doing 30. I walked away. Beaten and sore and slowly. went back to work 10 days later. again, slowly. I've been noticing more and more a difference in ME. It takes me much more time to get thru tasks. I can't ell anyone though.

I relate to what you're saying. It can feel so isolating. I think its horrible. Just some of the times I hear I look fine but I'm putting on a good act. I feel so hurt. Good luck. I've had my tbi 17 years now.

People don't get it. My mom doesn't even get it. I was in a bad car accident November 3rd in Iowa and lost 2 sisters; my mom broke her rips, her scapula, and had a gash in her head. My 4 year old sister had a minor brain bleed. I was left internally decapitated, had multiple brain injuries, broke my nose, and had blood behind my eye. I finally woke up from the comma November 24th one of my sisters that died's birthday. And my left lung collapsed. I've gotten better so far but I'm still very mentally not there. I get irritated easy, I can't control my anger, or my feelings. It's now march 14th 2017. Even though it's only been a few months it's still hard for me to handle everything. My education is back to normal I'm back at my age level for schooling. But she said I'm acting like a 4 year old. She really just doesn't get it.

I had a freak accident which caused a Carotid dissection which induced a Stroke when I was 31, paralysing my left arm and causing a huge long list of physical and psychological problems, that was three years ago and I can't barely remember what life was like before the Epilepsy and panic attacks. My friends and family try to deal with me and all my weirdness but it's tough. Fear and depression now dictate what I do, I turned to alcohol and if seemed to help at first, I thought I'd found a cure, though all that happened was I got really fat and unhealthy. This is the first post I've read where people my age talk about having a stroke. In a weird way it's nice to know I'm not the only one, thanks. One other thing I'd like to mention is that I've been surprised to experience some hostility from people who resent the fact I don't work and I'm on disability benefits despite being able to walk and talk.   

I agree with all of these; I was injured in an MVA Oct 2016 and am Just getting used to some of the effects of my TBI. I was (and occasionally still am) very fearful about what the future holds but realizing I can only do what I can do, and slowly pushing past my boundaries / retraining myself as much as possible.

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

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.

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