
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.
Written by Marie Rowland, PhD, EmpowermentAlly. Used with permission. www.brainhealthconsulting.com.
Comments (506)
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.
Anonymous replied on Permalink
I hate when people, who have no idea, think my friend with brain injury is drunk because she limps and may forget what she is saying in the middle of a sentence.
Anonymous replied on Permalink
I have had my TBI since 1995 ( I turned 17 in a coma) Im almost 36 now.....I wish I didn't live. Nobody understands me ( what friends I have))!!!! I had more friends then I knew what to do with?
Anonymous replied on Permalink
WOW you hit the nail on the head with these things
Anonymous replied on Permalink
It's not just what people say that's the biggest problem. I would say my biggest problem with uninjured people is the looks and the assumption people have when either talking to me, walking by me, or in an area with me. I'm 15 years post injury, and I've been able to come back almost fully with some deficiencies in my memory and/or speech but I appear injury free. That's my biggest problem with uninjured people is that because I look relatively "normal" and I have problems remembering or getting more agitated, they think I'm doing this on purpose. I'm not which is probably my biggest handicap now, frustration and channeling that frustration into something more productive and beneficial. Finally, I would have to say if people want to understand head injuries more proficiently, get on an airplane, travel to a country they've never heard of, and try to fit in with the natives as if you've lived there your entire life.<span style="\\"line-height:" 1.6em;\\"="">
Anonymous replied on Permalink
Oh, what I would give to get people to read this! I am 8 months post TBI and I feel as if I have lost almost everyone I had in my life! I still have a few incredibly wonderful people that I would would give the world if I could!
Anonymous replied on Permalink
I have a few people in my life who have suffered brain injuries, and this is a helpful reminder about things not to say. I'd like things that WOULD be helpful to say, though.
Anonymous replied on Permalink
This is perfect. It sums up my life at the moment and how hard it is when you want to get on but others don't accept your limitations. Thank you. Wish I could share on FB so my friends and family understood.
Anonymous replied on Permalink
I understand SO much - ALL of what has been written. It seems that no one has a clue about brain injury or the effects it has on individuals but those who have lived it! Especially, in the long term. As with all things, as mentioned many times, if others cannot see or experience it first hand it, they DO NOT BELIEVE IT! I have friends whom I will never spend time with again and I do not know how much longer I can stay married to my own husband!!!!!!! He was not around when my severe TBI occurred, refuses to educate himself on the facts, work WITH me on things that can help me with organization, etc, etc, etc, and blame me for everything and my "laziness" and "character". God bless you all !
Anonymous replied on Permalink
Excellent informtion, if we take a few things to use we all win.
Anonymous replied on Permalink
I have heard a few of those. I stopped talking to the public because nobody would give me time to finish my sentence. I got tired of the "you're from outer space" look. I isolated myself, now I find that I have anxiety attacks when I have to speak in professional situations. I want to go back to work, but I no longer have confidence I used to. I need a class or something to help me .
Anonymous replied on Permalink
wow..#9 is something I hear over and over again, its very frustrating and we can't explain that we don't always feel so lucky. Living with a severe TBI is no picnic and I am challenged daily by normal tasks. Emotionally I think I have lost alot of ability to care period...I never thought 2 years later things would get worse..but they do some days. I extend my love and hope for all of my fellow survivors..you are not alone, lets take it day by day..best wishes in the new year!!
Anonymous replied on Permalink
I AM A TBI SURVIVER 6/22/07 2 MONTHS IN ICU WITH INDUCED COMAS. WENT TO REHAB 5 DAYS A WEEK FOR A YEAR. LOST ALL PAST OR PRESENT MEMORIES. I AM MUCH BETTER NOW, MAINLY BECAUSE I HAD GOOD CARE AND DOCTORS. BUT MOST OF ALL I HAVE THERAPIST WHO IS ALSO A TBI SURVIVOR HERSELF. I CANNOT TELL YOU HOW IMPORTANT IT IS TO HAVE A THERAPIST WHO IS ALSO A TBI SURVIVOR! I AM A MUCH MORE POSITIVE THINKER NOW AFTER THE ACCIDENT. I BELIEVE THAT OUT OF EVERYTHING BAD THAT HAPPENS SOMETHING GOOD COMES OUT OF IT , IF YOU ARE "PATIENT" AND ACCEPTING. I NOW DO VOLUNTEER WORK IN THE REHAB FACILITY I GOT BETTER AT. I WORK PRIMARILY IN THE TBI UNIT AND AM TOLD BY THE THERAPISTS AND DOCTORS HOW GOOD IT IS TO HAVE ME THERE. BECAUSE IT IS GOOD FOR NEW PATIENTS TO KNOW THEY ARE NOT ALONE. I AM SO GLAD MY THERAPIST TOLD ME ABOUT THIS WEBSITE! GETTING BETTER EVERY DAY, DAVID B. ST. LOUIS, MO.
Anonymous replied on Permalink
All have been said to me by one or more of my relatives or people whom have said they care about me. Hard to handle at times, got to keep moving forward and looking up.
Anonymous replied on Permalink
#9 Let's me know that I'm not alone. I really want to strangle people when they tell me I'm "lucky to be alive." Lucky was what I was 12 and a half months ago. Thank you for this.
Anonymous replied on Permalink
the one november sharing is great. yes, stop telling people with t.b. i's. that they are lucky about anything. luck is not tangible and no one can give what they don't have. my wife has a t.b.i. from 2005. and the neuro's i have encountered were pretty much idiots and morons, with the exception of one. i have spent pretty much the last several years reading nothing but neurological books and magazines. i have well over 100 books. and 70 more to read. if you don't know what to say, i think one should be safe and just shut up. the best thing any family member can do is educate themselves. when educated people use the word "luck" sad to say, poor excuse for education that you have. i will continue to read and educate myself on the brain. since this whole mess started, it's been hell but getting better. there are more than 9 things not to say. but i don't wanna ramble. some of us could go on. don't want to. school starts for me in january for going for a degree in neuroscience, since no one seems to know what's going on with my wife's brain, i will get it figured out. thanks for taking time to read this, if you did. Ian Lees
Anonymous replied on Permalink
I've had TBI since 9/96, I was in the hospital for 2 months - when I did get out I had to go to physical therapy for 1 year 40/hrs a week - to learn how to walk,talk,eat everything like I was a 1 year old, I got TBI from a car accident which I also lost my 8 year old daughter in. I didn't know that because I was in a coma for 5 weeks - when they told me her name I didn't remember who she was and it took me along time to remember anything. To this day I don't remember the accident because I was sleeping - my boyfriend was driving. A man ran a stop sign and hit us and that is how it happened. The man who hit us was drunk .23 and my boyfriend also had a .09 but it was his 4th one. So needless to say he doesn't have a license anymore. After I got out of hospital I started doing my therapy and in that time I became pregnant - but didn't know until I was 3 1/2 months because with having the BI it made all my female things stop. Anyway I ended up marrying my boyfriend when I was 5 months preg. because he never had a kid and I wanted to have another. All was good for about the first 4 years after we married then it just started going down hill - of course it was my fault because I have BI - but we moved to a northern state for him to get his degree (he's from up north) I've always lived in FL. so didn't know anything about driving in snow and ALL that goes with living up north and remember he didn't have a license so I had to do all the driving also was raising a 4 year old. We lived up north for 4 years then I told him I was moving back w or w/o him and he came because he was having a problem getting a job w/o a license. So now we were back and he got a good job making good money but everyday when I would go take him to work and my son to school I would then go p/u son and a hour later have to go pick him up from work. He would come home eat the dinner I cooked then go to the spear bedroom where he played video games like 4 to 5 days a week. One night he went in there after dinner and I put our son to bed then I went to bed a little later but woke up at 5am to find him not in bed - I was like "OH no he fell asleep in the spare room." So I got up real quick to go get him and he was awake still playing video games. That was a Mon. and we had been fighting for like 2 to 3 years before so on Fri. while he was at work I moved and lived with friends until I could buy a house,I bought one 30 miles from his and our son hasn't and won't come stay w/me he stayed living at the other house because of school, friends and of course his dad is cool and plays video games like he does. Now I have a nice house/divorced from the one I fought with all the time and I'm living on disability and alimony. Fun Fun!!! My ex acts like he's all happy but I bet the place hasn't been clean since I moved and my son only sees me when I go take him to get something to eat or drink or clothes shopping or whatever he might need or want to do. I've moved out and am doing the best for myself but I miss my son!!!!! He wouldn't come stay with me when I lived 5 miles away because he said it felt weird staying over someone's house. "I'm his mom and I had a bedroom for him then and now at the house I bought I got him a bed, dresser, cable tv in there and he still doesn't want to come stay with me. I told him if he would come up like once a month that would be great and he won't do that. But of course my Ex makes a deal about it because I never have him spend the night. How are u supposed to make a 16 year old come stay if he doesn't want to?? But by the divorce parenting plan he is supposed too but won't. So that is how it is for me now. Yuk!!!!!
Anonymous replied on Permalink
A brain injury" is unpredictable I had a right frontal Lobe injury! The important thing is to diagnose it to better no how to get help and learn to live with it. But Dr's are the real problem...looking at you like you are nuts! Its not easy to live w/a victim of a head injury! Just hope and pray it will get past the point of it being tolerable to adjust too. Best Wishes!
Anonymous replied on Permalink
RE: "I wish i didn't have TBI. it been impacting too much on my life now that i am in college. i cry almost every day thinking about the past. this college has been so unfair to me. I keep thinking will i ever make it through with my biology degree in my hand."
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Above......hang in there.....i was in the same situation in 1985. I had my TBI just after my 3rd year in College as a college baseball player. It was tough.....I cried most days as well. I graduated after my 5th year with my BS in Bus Admin. I have been a small business owner for the last 10 years as a Financial Advisor and Insurance Professional.
Good luck...I just wanted to let you know that you are not alone, although it seems that way. I'm pulling for you.
Anonymous replied on Permalink
I have recently started a relationship with a man who acquired a TBI after a motorcycle accident 15 years ago. I knew him before the accident but have not seen much of him in the past 10 years or so. We are trying to work through the initial stages of our relationship carefully and together so that he feels comfortable and I do not do or say the wrong things so this article and others related to it are extremely helpful. However, I have read that if the frontal lobe is injured, it can cause an impairment to right or wrong decision making and a lack of consideration of consequences to actions. Recently my partner made advances (apparently in jest) to another female over the internet and explained our sexual behavior quite graphically to the other female. He also suffers with low self esteem and often puts himself down. Can someone help me to understand his behavior as I would really like to help him rather than judge him and just be yet another person who lets him down and leaves him lonely and isolated.
Thanks and good luck to all.
Anonymous replied on Permalink
I had a minor concussion about 11 months ago from snowboarding. I had a helmet on but.. i do not remember but i think my snowboard hit my head through the helmet I had a lot of these symptoms and still experience memory loss. Unfortunately, I feel anxiety, independence and articulating speech are the toughest to struggle with. One thing I am not sure about is.. it has been almost a year, am I still suppose to be experiencing discomfort with my everyday tasks? I can't seem to hold on to thoughts for long or recall memories as easily or frequently...
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I suffered a brain injury in early 2011, from hypoxia due to a cardiac arrest. While most of this article resonates, you left out a very common thing people say. When a brain injured person tells a "normal" person that they have memory problems, the normal person tries to make them feel better by saying something like "Oh, that happens to me all the time! I forget stuff all the time."
The normal person simply does not realize how different their forgetfulness is from a brain-injury survivor's innate memory issues.
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Anonymoua replied on Permalink
Wow! You're no friend. TBI tends to amplify those traits, so give your head a wobble, reread the list and believe what your friend tells you. Or just get out of their life as they do not need people with views like yours in it.
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