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 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.

13 years ago today at 16:32 hrs (New Year's Eve), I died for "38 minutes to an hour" according to CARE Ambulance. My head hit the ground so hard, the lights just went out. I was moving a dirtbike in between shots in back of my studio when I got hit by a truck...no helmet since I was just moving it over to the dirt and I grew up racing motorcycles.

I've always been blessed with the ability to use both hemispheres (I'm an engineer/inventor and photographer), and my recovery has been truly remarkable. However, it's BECAUSE I appear fully functional again that my close friends/family lose patience with my short-term memory...I'm told that I repeat myself constantly.

I've sent them this page's link...so, thank you.

BTW, if anyone wants to know what it's like on "the other side", I remember EVERYTHING, and I've talked about it on the radio a few times. Four weeks ago, I spoke with Bill Ross on his show called "Life Outside the Box". I come on at 26 mins, so fast-forward after he introduces me in the opener...enjoy: https://soundcloud.com/life-outside-the-box/lotb-12-02-17

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 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

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.

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)

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.

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

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.

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.

Just be happy you’re alive..

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.

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.

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.

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)

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?

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!

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.

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