9 Things NOT to Say to Someone with a Brain Injury

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Please remember, we are not able to give medical or legal advice. If you have medical concerns, please consult your doctor. All posted comments are the views and opinions of the poster only.

Same for me.

I had 2 strokes in March 2016 at 29yrs old. At that time I had many close friends. A handful of which I had been friends with since grade school and many more that I had been friends with since 10th 11th grade. Now 2 years later I have only one friend that even bothers to pick up the phone and call me and very few others that even keep in contact. I think a lot of that has to do with getting older people starting families me being the only single one without children has a lot to do with that but I believe you even more so the fact that it's because they don't understand where do they care to understand what actually happened to me. I have been told hundreds of times to try to be more positive, I should try harder, go to the gym more, stop taking soo much medicene. Asked why am I so irritable and crabby? Do I know how lucky I am to be alive? Why don't I find a hobby? Why don't I go out and meet a guy?
As much as it hurts and breaks my heart that Ive lost so many important people In my life I don't miss those questions.

Losing friend post-TBI is very normal for just about all of us Survivors. I lost everyone I biked with...some 20 friends. I retired 3 years post-TBI and have lost just about everyone I worked with. So be it. I like to think that is their choice.

So I work to make new friends. Something I have virtually no skills at. I was an army brat until I was 12. Dad retired and we settled down in one place. But during the first 12 years of my life we moved every year, two years, at most 3 years. And when you moved, you never, ever saw any of your friends again. So you didn't work hard to stay in touch, you just started over. But settling down in one place, starting 7th grade...and all these people grew up together. Had been friends forever. So I was still a loner. But 10 years post Severe TBI. I take my medications, especially the anti-convulsive and the Venylfaxine anti-depressant.

For the first time in my life, I'll strike up a conversation with anyone, anywhere and on just about any crazy topic that I see around me.

Remember, you struggle with mental fatigue as your brain is injured and it now takes more pieces of the brain to solve things. Be more positive...do that through "modern chemistry". ie. Medications. Do not be afraid to take what has been prescribed. Do not be afraid to investigate every med and see what it has for side effects and how it interacts with other meds. And then take them as the Dr says...talk with the Dr often so you have time to prepare for medication questions.

Yes, you must find things to do with your time. Keeping the brain active and learning new things is what keeps dementia away from your brain. That is oh so important!!

Go to the local Barnes & Noble book store and look through the magazines. Doesn't hurt one bit to buy a few that have articles that seem to interest you. But keep going back until you find something that "trips your trigger".

Way back when I got out of Engineering School in 1976 and went to work for an Electric Utility...I attended my first retirement meeting. I learned there were four types of Retiree.

The Leisure Retiree - a few holes of golf and a few hours in the bar. Then call it a day.

The Struggler Retiree - did some good financial planning for retirement, but doesn't have a clue what to do with themselves.

The Lost Retiree - didn't do any financial planning, trying to retire on Social Security and has no idea what to do with themselves.

And the Reinventor Retiree - that's me. Did good financial planning and did put a lot of effort into planning for what I was going to do in retirement. Seven years retired now an have lots of things to do. I built a big shop building I can do about anything you can think of with metal, weld, bend, CNC cut, roll...you name it...I can do it.

I also got into the Side-by-Side off roading lifestyle. So 5th wheel trailer, truck to pull it. And have some grand times out there. Not really that expensive...but I like it!!

Meet a guy? Well go to the websites like e-harmony. Be very upfront about what has happened in your life and I'm sure there will be replies that are good and some that are bad.

But don't be a quitter...stay out there doing you're best and life will be good!!!

I have suffered two brain injuries. The first in the oilfield in 1992 and a second reinjury in Afghanistan in 2010. Many things change after an injury. Friends come and go as in life. People don't understand but even trained professionals have to listen to you to comprehend things you are experiencing and from my own experience even then they don't actually understand. Most importantly,at least in my case, it seemed to be most important for me to understand who I am. Today, tomorrow, and future. I seem to have a few problems from my injury and people do not seem to notice but that's okay. I have personality change but it's for the better. I work on short term memory every single day. I function,at least as far as anyone can tell. Even the professionals. Do not be discouraged when they don't understand. That was the hardest thing for me to come to terms with. The professionals can be idiots too!

Friends can be a loose term nowadays.  I used to have a lot myself. Now, no. Partially my fault. TBI has pretty much made me a loner. It's ok. I don't mind, much. But, ya, friends get married, kids, jobs, and don't have idle time. And even though it may look like they have it together; chances are they don't but mask it well and don't even have time for themselves.  If you have 1 good friend; feel fortunate. Even 1 is hard to find. Make sure if you reach out to someone or hear those question; steer them to this site. Maybe they will understand. There are support groups for people like us, Idk if you ever went to one. Where I'm from they call it BIA. Brain Injury Assoc. Might want to look into it.  It is good to share with those who know what you are going through and understand, Friends can be there as well.

I found this article this morning. I thought it was helpful and thought you might too.

My husband is a TBI since 2010. I've taken care of him at home with a lot of help. He has come a long way in his recovery. He too had multiple strokes 3 weeks into his accident. Since this time the trach has been removed, I had to reteach him how to breath, how to hold his head up by strengthening his neck. He has had to relearn a lot of things like brush his teeth, comb his hair, put a shirt on. All with assistance. He has a G-tube, he can't swallow and has a suction machine by him all the time. I make all his foods, which is another reason he is on NO medications. He does OT/PT 4 days a week at home. Right side mobile and the wheelchair is a blessing. He only gets one day in bed a week. We keep him moving so he doesn't get blood clots.

I have worked very hard to stay positive and help in his memory loss. I have visited a therapist and this helps to keep me going.

My husband can be any age on a daily bases. He also doesn't remember losing his mom. He wants to see her all the time and denial sets in when I say she has gone to heaven to be with God. Not sure how to handle this one? Any help from TBI persons would be great.

Family doesn't know how to act with him, so they don't visit. We have 4 adult children 1 is full time on his care, another visits as often as he can. The other two can't deal with it. Our grandchildren are troopers, they have no problem with his condition.

God gave my husband back to me and I'm so grateful for that. I love him and will never give up. God is with us and helps with everything. We just ask.

So for all those loved ones out there dealing with a person that they love with TBI, I say be patient, be kind, take a breath, walk away when you are frustrated before saying anything damaging. I do this all the time. Compassion is the key.

Your story sounds a lot like mine! It’s comforting to know I am not alone. My husband 6 months ago went into cardiac arrest and suffered two strokes. It’s super hard I commend you because I try to stay strong guys it’s so hard. He has 6 brothers and two sisters and a mom no one wants to bother the hard thing is he can’t accept it


I was engaged to a young man( he was 34 and i was 28) in the early 1980's who suffered permanent brain damage as result of a bad auto accident. Although he resided here his parents who were quite on in years took him back to Florida to live with them and his fraternal twin. They are all deceased. I lost contact with him as his family thought I should go with my life but I found him recently . He is in a retirement home and I spoke to him briefly. I want to go visit him but do not know if that would be worst for him. The staff said they knew of me as said he spoke of me all time and knew my name. He was a wonderful, intelligent, loving man and his accident altered his life , mine and that of so many others. I am sending cards, letters, almost daily as he no longer has any family, never gets mail or visitors ., He does have a guardian. What can i do for him? It must be awful. I want to be a friend of sorts as everyone needs to know they are cared about, remembered on their birthday! make him smile, laugh, be happy. I always hold a special place in my heart for. him. He referred to me as woman of his dreams. I regret we were not married as I know there are frustrating days but I loved him so much and visited him daily in hospital and rehabs for 2 years! Then they chose to move him back to their home down South ( I understood that). What can I do for him? Should I take a trip down to visit? I know what we had can never be as he is the same yet different. I just want to be his friend, let him know he is cared about., never forgotten. Thanks!

I am so sorry that he was moved away, even if it made sense for the family. It sounds like he loves you so much and you him. I don't know the extent of his condition, and these visits can end up being difficult emotionally, not just because the sorrow of what was lost, but because of his confusion. That said, I think you should still go if you think you can handle it. After that initial visit you will be able to know how live interactions with him will be. TBI can be the most lonely thing in the world. Sending letters, little gifts like his favorite snacks or books, if he is able. . . maybe virtual games such as Words With Friends. Anything you feel good doing, that lets him know that he is remembered and connected in this world, is an amazing gift and will help him greatly. You are an amazing women for staying connected with him. I know it can be so much easier to turn away. Sending you love and strength.

I have a brain injury, go see him. Stop being so afraid. You can change his life.

You are an angel. Stay in contact and keep being his friend, no matter what. After a lifetime with TBI, lonely is my worst condition! I am surrounded by my large family, yet no one in my circle really understands what it’s like to be PTBI! If you can, make the trip! May God bless you for your loyalty .

Your husband is very lucky to have you. Sure your faith in God is the backbone of who you are. I have TBI as well. Told possible CTE. Stage three. My wife too is a Christain. She is a blessing.  I can not relate to what your husband is going thru.  I have had multiple concussions due to sports. It has taken its time to catch up, but it has. This I do know. My wife's mother lives with us. She is 93.  Her husband also lived with us but passed three years ago or so. Alzheimer's. Wife's mother has dementia.  Pardon my spelling. My spelling used to be really, really good. Now; not so much. Mom still asks where her husband is. We keep her husband's obituary on the table by where she sits.  We tell her and give it to her to read. Don't know any other way to do it. I hope your husband gets better. There is not much worse than remembering what you used to be able to do, and now, not. There are support groups for caregivers. In CT they have them through the Brain Injury Assoc.  It is good to talk to those going what you are. I think for you, it's an opportunity to share your faith.  Someone out there may need you besides your husband, God bless you.

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.

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.