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9 Things NOT to Say to Someone with a Brain Injury

Comments [183]

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.

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

Comments [183]

Everything I read in this article is my son. He had a brain injury in October and recently turned sixteen. It is very hard and I've now realised I have said some of those things much to my dismay, I'm going upstairs to give him a big hug and apologise to him! I try mainly to be positive but not always easy. Thanks for the info!!

Mar 30th, 2015 4:35pm

So true, people just don't understand what we go through, everyday is different and a struggle but you do your best and just tell yourself it's going to get better just take time for the brain to heal. You just got to stay positive and pray everyday that your brain will heal. Life is good even living with a brain injury just got to take it one day at a time.

Mar 20th, 2015 10:01pm

I had a snowmobile accident that led to TBI. It also damaged my left eye so my pupil wont dialate. Im dizzy whenever awake....this article helps me see im not alone. People just need to b understanding. My article is www.mlive.com. search miracle january 2010. Probably 1st one about walking miracle

Mar 11th, 2015 9:39am

Most common thing my family and roomates say are "I'm just lazy and stupid"

People don't give a s****.  That's the problem.

Mar 6th, 2015 5:42pm

To Dave,

I know what you are talking about being alone. It is so hard to be alone. Especially when people that used to love you walk away. That is what happened to me. I can not afford therapy so don`t bother trying.

I am 56 years old and due to my health issues I chose to just not date. I do not want to get hurt nor do I want anyone to take advantage of me. I hope your find something that will make you happy Dave. If you wish to contact me my name is Janice and I am in Canada

Feb 24th, 2015 6:01pm

The man I love has a pretty severe TBI from an accident eight years ago. He is great because he ended up being the guy with the perpetually great attitude and wonderful spirit. His memory is bad and he can't remember more than 15 minutes. He remembers better for me. When we first met his memory was a few seconds. His sleeping habit is pretty bad but I think he gets enough sleep overall. The main obstacle we have is outsiders. Too many NOSEY people who don't get it, or don't understand how this works. A lot of my friends don't understand how this makes me happy. You just have to ignore other people and live your life.

Feb 16th, 2015 10:52am

My name is Gissel I'm 15 I was in a car crash in 2014 I can. Barely remember my 8th grade year or my childhood memories or my birth mom (she died in the accident that caused me to loose my memory) I remember her eyes and her blood and I had broken the front windows glass we were hit twice it was a 3 way car crash my cousin was okay he was in the back all that happen to him was he head hiring the side he was fine he got me out of the car and out of the front window I slipped into a coma for a week I didn't remember my dad or my step mother or my uncles and aunts when I first came back "home" only it wasn't "home" its just a place I have trouble remembering things and sometimes I wake up where I don't remember a thing and some times I remember everything but that only last a couple of hours I want to remember so badly but I don't think there is a chance because I have internal issues more often and its been getting easier to remember and now when I wake up and forget its only 2 times every 3 months I am afraid I've been depressed and I still am scared that one day I will never remember what I love and hold dearest to my heart right now I am living proof of a now and loving and living it I love life but I don't want to loose it in an instant can someone just someone tell me if there is an easier way to deal with this instead of therapy and meds I would love to hear it I really wood

Feb 14th, 2015 2:49pm

Ive recently begun a relationship with a man who has TBI. He was in a car accident years prior to meeting me. The past months have been fine, but the past week has been extremely difficult as hes been very much different. Slow slurred speech, the only way to describe it is a "drunk" like state. I can barely understand him. I try my hardest to help, and to understand and allow him to be independent. IF anyone has any advise to give please do so.

Feb 9th, 2015 8:46pm

I was hit by a truck while on a motorcycle in August of 2013. I was thrown 58 feet. I literally was thrown out of my shoes and socks. My leg came out of its flesh and broke the bumper. My head broke the windshield (no I didn't have a helmet on). I remember everything until the ambulance came. I have since met by chance the doctor who lived on the street and saved my life and the policemen who was the first responder. I met them months after the accident in public by chance. I recognized them. They thought I died. They said it was a blood bath. I had many operations. Shoulder replacement, pins and screws in my hip, thigh, knee, calf and ankle. I dislocated my other shoulder and fractured my back and neck. My scalp was peeled back and sewn back. I have a traumatic brain injury. Why am I writing this ? I guess it feels good after almost 2 years to put the accident in writing. I am not mad. I do not seek pity. I am back living at home with my wife and 2 sons after months of hospitalization, living in a rehab facility and much physical and mental therapy. My life and the life of my wife, kids and family will never be the same. I really don't know how to end this post and put a big bow on it. I guess it could be a lot worse. But I guess it couldn't have been at all. But it happened. I am alive and happy for that !!! For anyone else who is going through a similar event or has a friend or family member going through a similar event. I am there for you. Really I am.

Feb 3rd, 2015 11:50pm

To the people who replied to my question and request for advice on how to support and reassure my husband following his accident - thank you so much. I have read both replies over and over and will take and use your advise. Thank you for taking the time to help Many thanks

Feb 3rd, 2015 2:19pm

It's been over 10 yrs since my car accident caused a head injury. I see a therapist since my accident. I have short term memory loss, brain damage . It hurts so much when family gets frustrated with me . It is so hard to try to make people to understand..I've been told by family to stop bugging them because they feel like they have another kid, can't you think for yourself? Many other hurtful things have been daid to me. But do they not realize how hard it is? To try and tell them any conversation you cannot and do no longer able to say the correct thing you want to tell them and some other sentence comes out .I remember how confident I use to be . And that it bugs me so bad to. I'm forever talking to myself telling my self that I mess up again .I wish people could understand .I myself don't understand and I hate it.

Feb 1st, 2015 7:34pm

To the lady about her husband (January 17th 2015; 4:31 pm)...I sustained an ABI about 5 yrs ago along with both my children.  We have gone through quite a journey just as you and your family are.  We were told that my son would never pass a 6th grade level and he has blown all the doctors away with his continued development that should NOT be possible..currently he is 15 and is totally in love with QUANTUM PHYSICS of all things! Total miracles...but certainly not without MANY challenges.
I applaud you for your incredible faithfulness to your family!  Stay the course...many of these things will subside with time but of course you cannot ignore them while they are present.  I have found that most ABI/TBI issues the patient suffers through have an element of truth in them and the injury is blowing it out of proportion.  I don't mean that you would actually leave husband, I mean that he has a genuine belief that's at the core of his issue, but it could be incredibly small in reality or more likely, that the belief is NOT ABOUT YOU, but more about him...he can't understand how you could possibly want to stay with him.  Many people think that they're value to their family has to do with their ACTIONS...the things they provide for the family.  Therefore, when injured like your husband is he may not be able to understand how you could possible have ANY true feelings for him other than pity (and men especially despise pity).  By your comments it seems obvious that his true value to you has NEVER been what he can do for the family (those are just needed perks) but rather just simply HIM!  We don't usually talk about it this way, but for many the highest value their significant other holds for them is "to be KNOWN" by that person.  Actions can be replaced in other ways...things he used to do, but for you NO ONE can replace being known by him.  If you agree that this is how you feel (or something similar) then getting him to understand that his value has ALWAYS been this to you, then it might help him with those feelings.  I have struggled through these feelings myself and have felt like an empty shell of a person without real value.  But realizing what I just mentioned was huge; understanding that my presence holds emotional, mental, spiritual ties in place for my family and that there is no greater value than that!
All that being said, if he isn't already, at some point he will probably deal with the very idea of being known himself, because for him this has all changed now.  Having walked through this so far, I believe that our core personalities may not necessarily change, but the bridges we have used to express ourselves have been destroyed.  It takes a newborn many years to develop ways to communicate but we expect that...after something like ABI it takes years to find alternate ways to communicate ourselves again, but we don't realize that so added to that journey tends to be fear, anxiety, anger, depression because we don't understand what's going on and if we will get where we need to be to ever feel normal again.  But it's just a new normal...he gets to explore and find new ways to express himself.  It's hard, but it's worth it! The brain is incredible...its greatest strength can also its greatest weakness...belief!  Right now it sounds like you have an incredible amount of belief...keep pouring it on him!!!

Jan 30th, 2015 9:56pm

Thank you for this article cause my biggest problem is doing everything for my daughter who has a TBI

Jan 30th, 2015 3:37pm

i had a brain tumor when i was 5 years old

balance, concentration and memory used to be the only problems i had... untill the last year or two

speach, and words coming out, i have myoclonic minifits caused by tremours, and my hearing is damaged from the radio therapy...

i'm trying to not give up on things and am getting help from my mum with filling a housing form out...

to all the survivers out there i wanna say a big GO YOU!! :)

Jan 30th, 2015 3:11pm

I think this article should be spoon fed to the general population. I have a best friend who is learning to walk and talk again. And he has made leaps and bounds. I just find myself wanting to remind him how athletic and awesome he is. And I've noticed he gets a little thrill when I remind him of how he does things. Like washing his hands and using his hair to dry them on. Or the way he cooks and the way he hides things. He's so strong and his family is great. I don't want him to get in the dumps. I want to keep him pumped up. This article really confirmed what I was thinking. And the person who commented about people needing more empathy couldn't be more correct. Thanks for this article. I'm going to spread it around.

Jan 29th, 2015 10:48pm

Ive had 2 brain tumours removed, 1st at three & 2nd at eleven, l cant even get out of bed some days, l now walk with a crutch

Jan 29th, 2015 2:17pm

Omg. People tell me all of these all the time. I just wish people could understand. If things don't make sense to them, that's because they don't to me either half the time. Seriously, this world needs more empathy.

Jan 26th, 2015 9:20pm

I know a few people who need to read this and realise how I am affected by my condition.

Jan 24th, 2015 5:22pm

You know what you're doing don't blame everything on your brain injury when they don't know how it takes affect on your mood, speech, movements and character.

Jan 23rd, 2015 11:04am

Having suffered an ABI early last year I can really relate to some of these things - particularly everyone saying "you seem fine" when you feel like you are struggling! 

In response to the lady who wrote a comment on 17th, 2015 at 4:31pm about her husband who is recovering from an ABI, I'm not an expert but I wanted to reply with my thoughts and hopefully help in some little way. Both you and your husband sound like incredible people. Him for battling against all odds to make such an amazing and quick recovery. And you for being there supporting him throughout. My advice (as I say I am no expert so take what advice you want and ignore the rest!! And all I know of your husband's ABI is what you have said in your comment so I may get things totally wrong)...my advice to you would be to read as much as you can about brain injury. You are probably doing this anyway as you have found this website but get to the library and find books on brain injury and look at the Headway website which has some good leaflets to download. This will help in your understanding of what your husband might be going through. Everyone experiences a brain injury differently but maybe he doesn't yet have full insight? He is possibly still realising/coming to terms with his situation? And low self esteem, anxiety, depression and suicidal thoughts are all common effects of an ABI. It's still very early days for him and he probably has a long recovery journey ahead of him. Try not to be too upset by his words and not take too much of it on yourself. He's in a safe place right now and hopefully as time goes by he will start to gain a better understanding and insight and see that you really are there for him. Keep telling him how strong and determined he is and celebrate all his achievements no matter how small and hopefully he will begin to take it on and feel a greater sense of self worth. 

Would he be able to access a counsellor? Maybe through the hospital or Headway? Then he can talk about his worries to a professional who can help him explore his thoughts. And any information about the ABI that he could take in could be useful too...like those Headway leaflets...before I saw those I didn't understand what on earth was happening to me and why I felt certain things. It was like a light switch was turned on when I read them, 

And maybe you could look at some counselling for you to help off load your worries and all the emotions you have had to deal with? I imagine Carers UK have a helpline...maybe you could start there??  And can a friend watch the kids now and then so you can have some "me" time? A nice bath or just an early night? Look after yourself and you will be able to look after your husband best.

And what do you do when you go to see him? Could you do some simple crafts together? Listen to some nice music? Read stories/the news? Skype a friend? Can he mobilise/be taken on a wheelchair outside for a wander around the hospital grounds? Maybe doing something nice together would take his mind off things and you could enjoy having a laugh together. 

Just ideas...but I hope they might help. I still have a long way to go on my recovery but for all the things I have lost I have gained an even stronger relationship with my partner and a real appreciation for life and the beautiful things and people in life. Good luck on your and your husband's journey. The world is on your side xxx 

Jan 23rd, 2015 10:28am

This is so true. I suffer from a acquired brain injury as a result of an accident and it's so hard to explain the feelings I have.. Arguing with someone is especially hard to deal with as u don't know If what they are saying is the truth or if they are using the memory loss against u and making up things.. I find it hard to trust anyone as I can't even trust myself.. This will help paint a less confusing picture when I'm trying to explain things!

Jan 22nd, 2015 9:45pm

I was run over by a car at the age of 11, the car was doing 60 - 80 km/h and as a result of the accident i got a sever brain injury and the most annoying thing about people that don't understand the feeling of having a brain injury is that they think your incapable of doing things for yourself because you have a injury. And when you get called a retard and mocked because you stutter words constantly but you can't help it because its now a part of you. Or when you have a shorter temper than most people and snap or when you have problems that are affecting your family so much that they can't take being around you and separate because you are too much of a burden to them.........

Having a brain injury is the worst thing in the world, it ruins your life.

Jan 21st, 2015 6:29pm

Thankyou for sharing your comments, if any one could help me, I'd be so grateful... My husband had a very serious car accident in August 2014 and is still in hospital. He was scored a 5 on the GCS scale upon admission, and shortly afterwards a 3- we were told there was no hope and we were as a family devastated and prepared to say goodbye to my best friend and partner of 19 years. I told the doctors if he remained in VS I'd still love and support my husband, and I 100% meant that. However just 5 months later, he has been an inspiration and fought so hard to overcome everything he was up against. He is fully awake from coma state, he had his traceostomy removed (something we were told would never happen) in October, he's eating and speaking and beginning to overcome his physical difficulties with strong rehab care and his determination. What I worry about and would like some advice regarding this is, his emotional state,he's convinced il leave him for someone else "able bodied" his words not mine. I always reassure him that I won't leave him and I love the new man he is as much ,if not more than before, to see such strength to overcome such obstacles and prove experts wrong has blown me away, and made me so proud to be his wife and to embrace our second chance after coming so close to death, but he won't believe me. It has become almost an obsessive thought (discussing for around 6-7 hours a day- I'm at the hospital for around 8 hours a day) and is followed by suicidal threats should this happen and I'm terrified I won't be able to convince him I mean every word. I've received advice from neurophychiatrists how I should handle this (distract or reassure) but how, as someone effected by Severe TBI would you handle this please? I desperately love him, we have three young children who have adapted brilliantly and treat daddy just like daddy. We just want him to realise he is so special and we feel nothing but admiration and love for him.

Jan 17th, 2015 4:31pm

Mental retarded because they stutter their words out and keep repeating the same words until they can get it out

Jan 17th, 2015 8:02am

God Bless you all who have posted on here. No one can understand your struggles day to day except you.  May you find peace in rebuilding your lives and support where/when you need it. This country absolutely fails people with lack of support systems. 

Jan 12th, 2015 8:21am

August 19,2009 I was rear-ended by a woman texting and driving at highway speeds and I was at a dead stop. The impact sent the rear drivers side tire into mt back and caused the shock to explode sending parts into my head. By the time the reached me my heart had stopped and I was not breathing. I was fortunate to be resuscitated but I lost 7 weeks of memory and those memory issues occur absolutely every day. I am constantly retracing my steps or re-reading the same paragraph over and over until it sinks in. I used to be an avid reader and I think I miss that part the most. Some days I feel like throwing in the towel but I refuse to let this ruin me!

Jan 10th, 2015 1:22pm

Hello I had been diagnosed and cured in 2007 of a brain tumor, the biopsy had said it was in my head since 2003. I was cured in 4 and a half cycles of Chemo-Therapy and I had done so, through my positive attitude, while going through Chemo-Therapy I would hear nurses fighting to get me as the patient they would tend to on their rounds. After Chemo, I was home schooled when I got back, and too many people said to me "You're lucky to be alive" and I realized as a survivor, how belittling that sounded and felt to me. Because I wasn't lucky I have a WILL within me to live and a STRIVE for LIFE! God Bless ANYONE who must go through these horrid conditions of Chemo/Radiation Therapy. 

Jan 6th, 2015 9:11pm

Hi my name is dave. I sas assaulted seven years ago. And it has completely wrecked my life. I have spent so much time in mental health care due to taking overdoses and alcohol abuse. My family say I am lazy and useless and have never given me any support. I now live alone and very often wonder if it is worth going on. I fall in love with every woman who is understanding and kind to me. But I am 52 and most of the time they are to young for me and I have to keep away as they dont realise what I am feeling.and I get very depressed. These women are all in health care as I dont have any freinds does anyone else suffer from the same problems thankyou dave...

Jan 6th, 2015 6:52pm

Yes, I have anoxic brain injury myself from a accident and I'm having trouble finding support groups.

Jan 4th, 2015 8:39pm

Background: I was a timber feller for a logging company and in 1999 i was hit by a widow maker. I wasn't even actually working at that exact moment; just happened to be standing under a tree which a brisk wind shook a dead limb out of which struck my hard hat. Out of these 9 things i get told all but number 7 & 8 frequently. Mostly from my wife. The one that really pisses me off the most is the "you're lazy" comments! I'm not lazy and I'm actually a hard worker. It's just hard to stay focused and keep interest in what I'm doing. If I were lazy I wouldn't have returned back to the same job, which by the way is the hardest job I ever had in my life, just 2 month after spending 2 weeks in the hospital, and do it for another 2 years until I screwed my back up and could no longer do it. I am even guilty of one of the things. I tell myself often that I am lucky to be alive, but then I immediately go to the other end of the spectrum and start thinking "no, maybe you would've been better off if it would've killed you then your loved ones wouldn't have to go through the after effects". And that is weird because the after thought always comes in that way...not i maybe would've been better off, rather "you would've", and "then your loved ones", so that tells me that something off because of the way my brain goes from as if I'm saying it to myself to immediately as if I'm saying it to someone else.

Jan 1st, 2015 10:32am

I have severe TBI from a horrific car accident now I am being told I was a Aweful Mother and the sad part is I have no memory of it at all I have 3 grand babies that I can't be around because of it

Dec 28th, 2014 12:38am

I live with post tbi now due to a horse accident, the horse fell over on top of me and slammed me head first to the ground. Life isn't as easy as many may think on outside looking because they do not know what we who live with this do feel, and for myself most days can feel like being stuck in your own body watching the world knowing what you want to say or do and know how it needs to be said or done but still can't get it right that is a life of hell some days. This is a great article for many to read and I myself have educated myself so I know what I, dealing with and try to show others so they know and can handle dealing with me but sometimes not even that helps because people choose not to deal with the changes that come with post tbi so I do deal with many people in my world who do not care to adapt to life after so I now raise three kids on my own for most part and as if I never had this happen and that isn't easy but for these babies I keep going and keep trying to live life as normal as possible 

Dec 19th, 2014 8:14am

This is truely an invisible disabiity....the victums struggle everyday with usually no signs of what they are struggling with.

Dec 17th, 2014 10:15pm

Unless you have a traumatic brain injury you'll never understand what it's like to lose everything that you into and you are never the same again, you are FOREVER CHANGE...but I'm glad it happened to me instead of my two sisters. But most of the time they don't understand!! 

Dec 17th, 2014 11:22am

I had been diagnosed and cured in 2007 of a Brain Tumor. With that all of these side effects which were spoken of, above, have surely befallen me. I applaud whoever wrote this article and how accurate it truly is to how WE the survivors of Traumatic Brain Injuries (TBI's) feel. Especially with how in the final piece that you discuss. How we all HATE when anyone says to us, "You're lucky to be ALIVE!" because we aren't "lucky" at all, we were STRONG individuals who loved life too much to just want to give up, as many can if they feel too weak. Not only that but it makes us feel Shame when people compare our victory in the war against cancer to just simple luck.

Dec 12th, 2014 8:10pm

 I honestly have no idea how my wife has put up with me over these last three years.  It was a nasty epileptic seizure that threw me down onto the pavement, and the convulsions repeatedly smashed my head and face into the ground until my head was just so much pulp (and while that trauma was the worst--they talked to my wife about "end care" in the E.R.--I had three similar head injuries also resulting from grand mals). And a recent bout with sepsis didn't help with emotional grounding, which is perhaps the big, bad problem my wife has been facing every day since; my inability to handle frustration, this constant and voracious anxiety, this unfamiliarity with a world I used to navigate fairly well.  Perhaps the hardest part for her is my ridiculously reclusive behavior; because of me, all of our friends disappeared, I'm at a great arm's length from her own family members and I find myself turning to alcohol to numb the horrid fear that is loose inside.  For those who have stuck with someone with a TBI, my heart is with you.  I cannot imagine the hell I've put my wife through.  Never in my (old) life would I have even imagined such behavior.  Oh, I hardly mean that "back in the day" I was some saint; honestly, I cannot remember what I used to be like, and that huge absence just constantly terrifies me.  I just in some way, little by little, I can try to begin to make things somehow better for her...

Dec 9th, 2014 12:32pm

my boyfriend was in a car accident 6 months ago. He now suffers from memory loss. he remembers nothing  from his past and forgets what he does and says. I stay positive for him and hear him out. But inside I'm hurting I'm scared that something going to happen again. 

Dec 4th, 2014 11:48pm

That woman that said f you when people told her she was too negative, what I do is look them right in the face and say in my deepest meanest voice....YOU DON'T TELL ME....still saying that almost 13 years into TBI. Try that one sometime

Nov 24th, 2014 12:11pm

I had a bad car crash 2 years ago. In fact, with in 5 months, I lost my husband, my mother, then I had the crash. I swear to Gawd, if one more person says Im too negative, or gosh, your such a strong girl, Im going to bash their face in. Since the first death, I am totally alone. no family, and no friends. The few friends I had, did come to the hospital after they saw the news, are no longer my friends. I guess they weren't friends after all. They think I'm too negative or I  complain.  One person said, I bring them down. I just said.....F YOU.

Nov 8th, 2014 4:59am

Will share nine things not to say with my TBI support group .About 12 of us meet once a month.Fellow survivors injured much more than myself have saved me.IV lost friends and family from my TBI. In turn a new set of friends has presented it self to me.I'm a bus rider now.First time in 30 years.The bus is full of people working through disabilities.A lot of experiance and wisdom on a city bus. Terrifying at first now I get comfort and social time on the bus.

Nov 1st, 2014 4:28pm

My girlfriend says 7 of the 9 things to me almost every day. I am so fed up with this bullshit I want to leave her. But I don't want to give up. Any advice on how to deal with this would be appreciated.

Oct 30th, 2014 8:45pm

So Sorry for what all the people with TBI are going trough. I understand 100%. March of 08 I was assaulted by a convicted murder while working as a correction officer in a prison.I had lots of broken bones and 4 surgery's to fix knee and wrist issues. I was having awful headaches and not remembering even the smallest things. It took 10 months after the assault for a doctor to figure out I had TBI. I struggle everyday with putting my thoughts in order and with remembering to do things and go places. I can be on my way to some place and while going forget what it is I am doing or where I am going. I have had 3 great friends stick by my side all the way and I know it has to be hard on them too. I am not always easy to get along with. I lash out and lose my temper at the drop of a hat at times and I have been told I can say some pretty mean things. I don't I don't like being that way and I wish I had more control of myself. I know I am blessed to have them in my life still but a lot of the time I feel like I would have been better off if he would have just finished what he started. It's hell living this way.

Oct 30th, 2014 5:28am

May 17 2008, fell 11 feet off roof area , broke my fall with my forehead on a concrete brick wall. Fractured C5, not diagnosed till few years later, head off centered on atlas /axis not diagnosed till later. Lost my career as a nurse. Family as in siblings, only 1 helped out of 6 siblings.  I have frontal lobe, parietal , occiptal and other lobe issues.  They distance themselves from me cause they say... I am crazy.   They expect me to do more as to what they expect but don't even know my limitations as with executive functioning, visual perceptions, language cognitive impariements, personality change, i dont' even taste salt anymore,  etc.  They think I don't try hard?  I say, i fell 11 feet broke my fall with my forehead, adn you think i am the same?  I know I am not.  Thank heavens for sites like this, at least hopefully when I send it maybe they will stop being so ignorant and read something.  A TBI can happen in a second.  Life can change in a second. 

Oct 28th, 2014 12:19pm

I had a major stroke 14 years ago and an ischemic stroke 8 months ago. I made so much progress and now it feels like I'm back at the starting line. To all the care-givers who are suffering because of a loved one's TBI, I just want to say that your hurts are real, too. You're allowed to be angry and frustrated and you are allowed to walk away if that relationship is breaking you. Just please, before you do, find some support. Find someone to talk to who can understand how painful your own journey is. I know I lean hard on my loved ones, and I know I wear them out, but not everyone with a TBI is capable of that insight. Nothing about this is straight-forward, and I admire the courage of spirit it takes to try, 

Oct 6th, 2014 3:26pm

I am so very glad I found this and I will be sharing it. I have a loved one who means the world to me. We met about two years after he was injured, and he was always very upfront about everything, but I don't think I fully grasped the continual effect on his everyday life until recently. I have been around brain injuries before and knew the main things, but I want know how to support him and what I can do to be there for him into the future. I often will say, "I already told you about that" or "stop mumbling, I can't understand you" and this makes that clear to me now. Thank you so very much for posting this article.

Oct 6th, 2014 2:38pm

Almost 3 yrs ago July 8th 2011 I was in a motorcycle wreck , I was flown to Oaklawn IL. where I laid in a coma for 2 months and now have some major brain injury in the front left lobe. In the last 3 yrs Ive lost most my Friends / family and have repeatedly been denied disability. This page descibes my life to a T. I wish everyone could and would read this pg so I might get some understanding. I need help and I know it , know it is worse than needing it.:(

Oct 2nd, 2014 8:46am

I am three years out from a huge stroke and I get people asking me why I need to rest all the time and that I should try harder and exercise more. I'm doing the best that I can!!!

Sep 27th, 2014 1:35pm

I had my brain injury 14 years ago & can't do thing's the same way or speed as other people. I NEVER GIVE UP, so many people expected & 2 wanted me to give up. But i never did & it will always be hard as few people understand.

Sep 27th, 2014 7:04am

Confabulation. Thank you. I'm a boyfriend to a TBI survivor. Confabulation is a major factor. Thank you again.

Sep 26th, 2014 8:44pm

oh my gosh this website makes me feel so much better I realize just how lucky I am to only suffer as much as I do thank you all for your contributions its been enlightening

Sep 26th, 2014 8:29pm

I would like to mention the 10th, the very worst is "Do you remember when?"

When ever my wife talks to family members, they always say that. She will lie, and just go with it, but soon she will ask me to go home. Please, let everyone know that this is the worst a person can go through. My wife didn't even know me when she came out of her coma. The doctor's said she would never be able to come home. I fought tooth and nail to get her home, I did. It was not easy, but what can I say. Yes, the intimacy has gone, but maybe with some work it may come back, I hope. She is so beautiful to me.

Sep 26th, 2014 1:18am

I have one question WHERE IS THE AFTER CARE my adult son suffered a TBI 7 years ago and after spending a year in hospital and rehab facility he was sent home and for the last 6 years I have been his primary caregiver but don't tell him because he thinks he is the same, "well he knows he has a little problem with memory but that's all".....  Believe me he's different you don't take out most of someone's right frontal lobe and part of their left and and not get a changed person.  I deal with anger for no reason, forgetting what he has just doing sometime I can tell him the same thing 3 or 4 times a day and he will forget sometimes just minutes later.  He would not take a bath or shave or do any of the things to take care of himself if I was not here but again don't tell him that because he believes he would do just fine  haha, I could go on all day about what makes him not the same man he was before but the one that worries me the most is his confabulation if you don't know what it is google it) he tells stories all day long some of them quit fantastic but none of them true and I don't mean he tells one or two a day I mean he talks none stop all day long and at least 75 percent is not based in reality, if he thinks it it becomes the truth and people think it's funny but believe me it' not he has stop the police on 2 different occasions and told them that some one has committed a crime even named the person and the crime never took place.  I have tried to get his neurologist to send him to a neuropsychologist but he just says oh he's doing great just "look" at him ( I know the Dr does not think it is really none stop all day long but it is, I know where the saying "if his lip's are moving he's lying" comes).  Back to my original question where is the after care that teaches us how to respond, when to respond and when to just ignore a behavior.  I know what to do when he has a seizure but what effects does it have on someone when they live a complete fantasy world, I don't know maybe nothing but my point is I DON'T KNOW.  and now that I have that out of my system I can get back to my day............ ps to everyone out there caring for someone with a TBI bless you, a lot of them don't thank you they don't even believe you do anything all that great they can't they truly can't, those who can do, but some can't see it especially those with a fontal lobe injury.  If they had a broken back they would thank you profusely but they have broken awareness.  I know it has been easier for me because my relationship with my son did not change all that much, I was his mom before and I am still his mom but for a spouse a life partner going from partner to caregiver is another conundrum.  Bless all that have TBI's and all who cares for some who does.

Sep 8th, 2014 5:59pm

I'm really sorry that you're going through this - can you talk to anyone to offload - you feel like you're moaning but you do feel better afterwards and better able to cope x My husband has a brain tumour - I've been looking after him for years - some v bad times and others pretty normal , what helps me is humour - last night i got a bit pissed with him - he reacted, and I said What do you think I am the Arch Angel Gabriel ? Yes he said - we giggled This am - I've got my glasses Me - that's great , we're you looking for them? Him - I don't know ! What else can you do but laugh together xx

Sep 1st, 2014 6:50am

Those with TBI's are thankful for help from family members & friends. If the ones who are close to the patient feel overwhelmed or over worked the patient is not using you he or she is incapable of doing the task. Your acts of kindness may not be able to be recalled by the patient. The TBI victim knows that you have helped them but is incapable of recalling in detail what has been done or when. This lack of recollection is very aggravating for the patient because they know at one time they were able to complete the task, how to do it, & which steps to do it in. Picking up from where they have left off on a task can be very difficult whether it's 2 hrs later or 2 days later. Planning note taking & recording completed tasks is highly important. Lack of sleep can drastically effect memory, attitude, aggression, anxiety, depression & or train of thought. TBI patients require a minimum of 10-12hrs of sleep per night. & possibly a 1-1.5 hr nap during the day. Your brain is a muscle, with a TBI it is having to work twice as hard to do ordinary tasks for those not suffering an injury such as this. Imagine doing squats at the gym with high intensity, the next day it feels impossible to walk & the following day is extraordinarily more difficult. That's from less then 1 hr if working out on one particular muscle group, whereas the brain being a muscle controlling all of your muscles, thoughts, taste, sight, smell, hearing, feeling at once. This can be overwhelming, exhaustive & irritating for the patient. Getting up to fail multiple times a day for TBI patients can become hopeless. As a normal functioning human being you have it pretty easy in comparison to a TBI patient. Be thankful for your capabilities to complete everyday tasks or even to be capable to walk, talk, or recall.

Aug 29th, 2014 8:24pm

I understand those who are with someone who has a TBI and the frustration that goes with it. I am personally running out of compassion, care and concern. I guess you could say I am burned out. I try to help in every way I can. When he has the children I do EVERYTHING. It feels like it is expected and when I want to talk about things all I get is a defensive, angry person - denying, lying, saying whatever so he doesn't have to see what I do. All I read is what we are suppose to do for them. How we are suppose to act towards them. How we are suppose to understand they can't feel this or that. Do the tbi people know how hard it is for us? Or do they even care? It is heartbreaking that anyone has to experience a tbi - but for those of us who love them and try our hardest to make their life a better one ..... It's harder than anyone can imagine. It's thankless. 

Aug 25th, 2014 1:54pm

On April 2 2002 I flew out of a car window after the rear passanger tire exploded the car went into the grass median which had a dip and the car went airborne the driver ended up in the trunk and I went flying out the window and flew 35 feet and needed my right ear really attached again after the shoulder harness almost removed it April 2 till may 25th I was in York hospital. Coma for 10 days and I just recently really lived the whole thing in a nightmare. My life sucks now, but at least people love me for who I am. Nate Watts

Aug 25th, 2014 10:21am

I have a TBI from a car crash 7 years ago. Emotional problems dealing with the memories of everything that has happened to me has been my number one issue. I am shaking as I write this as I very rarely open up and let people know of what I've gone through. The car crash happened when I was in high school and during a year in college, I let someone know that I have a brain injury. It backfired as this person called me retarded. A college educated person was ignorant enough not to recognize how far I had come from the TBI to succeed through college and this person didn't understand the harsh and overused word of "retard". Has something similar ever happened to someone else?

Aug 23rd, 2014 1:23pm

People with TBI need understanding especially in school. Most of us have lost enough, much less our careers . If we are lucky enough to go to school we need to try 10x harder and still underachieve, we need assistance for free. Most if all we need true compassion and patients, as well as thinking outside the box if being very understanding. If you have not berm there please don't pass judgement, I hear you " I could koals if I had twice the time. I have to re-learn addition everyday. You try it. Love this post it does give me hope I'm almost done rs

Aug 18th, 2014 11:58pm

What do we do now

Aug 10th, 2014 10:38am

I have TBI. I say things to people I don't remember saying and I think I've said something to someone but didn't.  Does anyone else do this?

Jul 26th, 2014 6:18pm

I have lived with my husband with an ABI for 16 years.  Apparently I say and do every thing wrong.  I am really tired of always being wrong.  I have tried to respect his ABI and capacities and we have kept running our farm for these 16 years.  I am not appreciated and have no sense that he acknowledges that I have feelings or emotions.  He is totally self absorbed.  He is now taking a separation from me to allow his head to recover as he is convinced that he is losing his sanity and it is all my fault.  He says he cannot establish a routine or  do the meditation and alike if I am in the house.  He is very irritated by whatever I say or do.  He has a list of my major stuff ups over the past 16 years which he trots out as proof of how awful I am.  Sometimes I respond and  I get angry too.  He has recently been diagnosed with bipolar with manic episodes. So why do I feel like shit, I have raised two sons successfully.  He goes around and tells whoever that his marriage is a disaster and I am a terrible person. I am not perfect and I do respond when goaded incessantly.   I have had it with people that tell me how lucky I am, how well he is, and that there is no sign of any damage - why don't they walk a mile in my shoes and acknowledge to me the wife of a man without a left frontal lobe and major damage to his right frontal lobe that I am OK and yes he is a bit odd.

Jul 24th, 2014 8:06am

The comment today on Oct 13th, I also really like. I feel that all the time with people. Trying to compare there everyday issues with TBI person. It's demeaning.
It's a horrible feeling. FOR EXAMPLE:
I don't go to someone with, say, cancer, and say to them, "oh, you feel sick? Well  I feel sick all the time too". Makes me feel awful to even think to say that. I do not understand what a cancer patient is actually going through so instead I would say " WOW, that must be tough. Your a strong person dealing with all that, and I can never understand what it is actually like unless I am going through it also. I get nasuea as part of my TBI but it is very different than in your case."
This way they do not feel you are comparing your own issues with theres to make them feel like they do not have that big of a sickness. Love all these posts and comments. They are very helpful.


Jul 23rd, 2014 10:48am

Also, Do not compare your ieveryday ssues to a suffering TBI person issues, as if you have the same. It makes them feel like you pass off there problems as to say everyone has what they have. Feel hurtful and leads to depression when us suffering from TBI KNOW what we were before we had it and what we are after. It is NOT the same issues as other people or in the same way. So try not to tell a TBI patient, 'Oh ya, I have headaces all the time too" or "I have memory loss too", just try and be understanding that, these issues are EXTREME and it can really hurt our spirit for someone to pass our issues off as if it is nothing. Listen and stop talking aabout yourself nd taking over what a TBI person has and has to say and it will help them heal inside and out.

Jul 23rd, 2014 10:32am

My boyfriend has a tbi and received it before we started dating.  He shared his injury with me right away.  I admit I had no idea what this really meant and just how his tbi affects his life.  I have read so much and gone to his doctors that now I fully understand there are things he does and says that he can't always control.   It isn't easy to remember he may be saying things without knowing how it sounds.  He can get angry very easy and focus on negativity a lot.  This site is giving me comfort that I am not alone. 

Jul 23rd, 2014 3:37am

To all the people who say a person chooses to be angry, happy, sad, should try having a brain injury.

Jul 21st, 2014 5:28pm

I had a very horrific brain injury. Around 17 years ago. I still have many problems. I cope pretty well. I have very bad sorry term memory problems. I really try to be very positive. Rather than dwell in sorrow Or discontent. I'm in control of my destiny if I want something I try to make it happen. I have ptsd and anger issues when confused or upset.

Jul 10th, 2014 1:59am

Please know that your are here for a purpose!! God loves so much, know that he has a plan for your life. DON'T! give up...Maybe it's to teach others how to understand people living with brain injuries...I'm not sure but God will lead you in the right direction, that I do know. Be encouraged, I can tell your a fighter because your still here! Your are courageous and wonderfully made!! Get excited about life and make your mark in this world...YOU can do it, it's already in you!!!!

Jun 27th, 2014 6:59am

I was a infant when I fell and had a brain injury.

When I started school  my mother told me to never tell anyone or they will say I am stupid.it did not  matter,my siblings would pin me down and show everyone the scare on the back of my head ,then say she is stupid,her brains fell out.

When I went to middle school my mother say never to tell the teachers or they will take you out of school and on one is at home to take care of you.

By grad three teachers knew some thing was wrong ,they said a learning disability.

This was   1969. support for my b/i was not Cleary understood at the times.

Funny how the support staff would go out side to smoke dubies all day long but was frustrated be me not being able to understand the process of math rules.

I am 52 now. And have had only customer  service work most of my life.

Now I am dealing with age discrimination .

Cant even get considered for a job as a night stocker at walmart.

Ontario works treats me like I am not trying hard enough.

I have worked all my life ,now I ha even begin for welfare.

I should just kill myself and stop the humiliation.

Jun 11th, 2014 6:53pm

Jolene here…….1994 head-on collision in a full-size conversion van with no airbag deployment.  I blacked-out but came to, still buckled in, with rescue workers working on getting me out.  No one suggested during emergency treatment or during follow-up in the next 2 weeks that I may have suffered anything involving my brain – even tho I was in a constant state of “fog” (kinda like when you get up in the a.m. but not quite awake).  It was only after it took me 2 days to remember that 8 and 5 equals 13 that I knew something was seriously wrong.  I still can’t do math without having a calculator to check my answers.  Along with several physical injuries from which to recover, it seems the aphasia was the most difficult to deal with.  Back then blonde jokes were big so I went brunette to avoid the automatic “blonde assumption” thrown at me. The worst thing I heard was “There’s no such thing as a head injury.  If you’d just handle your stress better you wouldn’t have a problem”.  I had to give up my real estate biz.  It was devastating to wonder “will I ever be smart again?”.  The neuropsych test established my IQ at 135.  I didn’t know what that meant – just knew it was good to have 3 numbers (always wondered what it was before the accident)! Years later, an argument between Frasier Crane and his brother Miles about IQ test results helped me realize I’m not stupid (go figure)!  That epiphany empowered me to move forward like never before and I haven’t stopped since.  For  all those out there that just don’t know if you can…….its been 20 years for me and I can tell you…..NEVER GIVE UP – NEVER SURRENDER…….Just keep swimming……Just keep swimming….(I love Dorie!). Our brains are capable of amazing things. By the way, I am in a good, committed relationship for the first time since then and He understands much more now because of all these stories (lights, noise, organization, etc).  I no longer feel secluded after sharing this with him. Wishing you Inner Peace and Love.

Jun 5th, 2014 4:15pm

I think a major one was missed from this list and perhaps should be added in as the 10th item for the top 10 things not to say instead of 9.  That is, "I didn't realize you were so sick."  Or, someone trying to come to my defense by saying, "Don't pay any attention to them, they just don't understand your illness or they just don't understand how sick you are."  I'm not sick.  I'm injured.  There's a vast difference between illness and injury; specifically TBI.  Please stop telling me I'm just sick as if I'll get over soon.

May 26th, 2014 4:42pm

i am reading this and it saddens me i wento hospital 8 yrs ago and came out in a wheelchair a year later i was such an indpendt lady@ that time @ my partner@ the time was working in u.k. and i was working in i.e now its all changed i do accept it :times but my p.a.are a lazy bunch one shrunk all my clothes u know the drawer of the washing machine i mentioned to her todsay and she replied i only here for personal care and making u a cup of tea which i can make better myself is it the same in u.s. are we backward here in i.e. just give me ur honest thought please talk soon mags

May 16th, 2014 3:53pm

My friend with a TBI sent this to me, and for that I am grateful. I admit saying at times some of the forbiddens on this list, and see that it is counterproductive to communication to do so.

My question has to do with the irascibility leading to an implied accusation (or sometimes its even outright). Is it too much to expect an apology in relative short order, or is it just as likely that her memory of the gone south conversation won't coincide with mine enough to make it meaningful to me, or that she may forget it even occurred? This is an ongoing problem that I'm sure others have too.

May 15th, 2014 3:31am

Yes! I'm a young adult with TBI, and I've read this article. I hate to say "all", so I will say, a majority of this text is true. I've never found anything on the internet that was precise with Traumatic Brain Injury, until now. After I post this comment, I will share this passage on the many social media websites that I go to. Hopefully, many more people will understand our, patients with TBI, situation.

May 12th, 2014 12:32pm

On those rare occasions when I've told people what I live with after my accident, some have dismissively said, "Oh, I go through that too." That really ticks me off. I tell them, "I suggest you go out and get a brain trauma and when you come back, then we can compare notes." 

May 11th, 2014 12:47am

I am not a brain injury survivor but I have a wonderful friend who is. Recently a mutual friend to both of us said "You know he has more control than he thinks he does". REALLY!!! I wanted to smack him! Please don't make comments until you've studied and understand the situation. I am just glad my friend was not there to hear this ignorant statement.

Apr 23rd, 2014 12:16pm

What really gets me is when someone asks if it still hurts!  (Mine was almost 30 years ago.)

Mar 31st, 2014 2:02pm

There were a few things on this list that I say to my husband who has TBI :(  I feel awful now....I am trying so hard to learn how to deal with his irritability & not take it personal.  I can handle just about everything else but his moods & impulsivity is really hard!  Thank you for this website...it has helped me so much!

Mar 4th, 2014 8:42pm

I really found this to be very helpful, I think that I will do as others have suggested and post this on my Facebook page.  :)  That way, the "You look fine"s/"You seem fine to me"s will fade away, hopefully.  In any event, I believe you forgot one:  One of my biggest pet peeves, post-TBI is the whole, "I never said that/You said X/That conversation never happened (or didn't happen the way you remember)" thing.  I could do without hearing that forever.  It seems that my short-term memory, even these (almost) 29 years later, is not nearly as perfect as I would have it.  *sighs*  Another one that I hear all the time from my boyfriend is that, "Oh, so your life isn't worth living if you're not superior to everyone else, is that it?"  Simply because I *used* to have an eidetic memory, and now my memory is like a... metal things with holes in 'em... Sieve!  ;)  Seriously, I knew the word 'sieve' belonged there, but you get my point.  Searching for the right word is annoying when you used to know all the words in the dictionary, then you got bored and read the medical dictionary and Gray's Anatomy, too.  *sighs*

Feb 26th, 2014 7:23am

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. 

Feb 23rd, 2014 12:43am

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?

Feb 21st, 2014 12:06am

WOW you hit the nail on the head with these things

Feb 8th, 2014 10:38pm

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. 

Feb 8th, 2014 11:03am

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!

Feb 6th, 2014 1:09pm

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.

Feb 4th, 2014 8:06pm

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. 

Jan 30th, 2014 1:32pm

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 !

Jan 24th, 2014 5:15pm

Excellent informtion, if we take a few things to use we all win.

Jan 17th, 2014 2:33pm

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 .

Jan 8th, 2014 6:51pm

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!! 

Jan 5th, 2014 4:19pm


Jan 3rd, 2014 4:53pm

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.

Dec 26th, 2013 6:09pm

#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.

Dec 7th, 2013 11:58pm

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

Dec 1st, 2013 10:21am

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!!!!!

Nov 30th, 2013 1:19pm

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!

Nov 27th, 2013 6:49pm

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."


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.

Nov 27th, 2013 1:24pm

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.

Nov 27th, 2013 9:33am

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...

Nov 20th, 2013 9:25am

From my experience, having TBI is one sure way to tell who your friends are.

Nov 16th, 2013 7:22pm

I think I'm starting to discover my husband has a brain injury like me, cause there are signs like mine!

Nov 15th, 2013 1:46pm

Thank you for opening the the world of brain injury to me. Alexa

Nov 10th, 2013 4:57am

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-injured person's innate memory issues.

Nov 5th, 2013 1:34pm

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.

Oct 18th, 2013 11:59am

Well written - unfortunately physical is recognized and catered for, unseen impairments seldom receiving due recognition. My son became involved with paracyling and came home demoralized commenting that he felt he was the most disabled of all participants yet was given scant regard for his needs and impairments 'you look OK so you are OK' where those who were blind, had a missing limb were well catered for. The cousin with a missing eye due to a car accident had a dream run with insurance company, received a good payout and was able to continue with her life. This family is at a loss to understand but were told that losing an eye is a 50% impairment therefore worth more than a TBI. Sadly not all family members understand executive functioning and the cognitive side of things either so it makes it so much harder for the person with TBI. Articles like this are most helpful to pass on to others. Many thanks

Oct 11th, 2013 5:40pm

I've lived with tbi since 1994 and I am sorry others have to live with it too...but I am happy to see others expressing the anger and fury I have felt (and expressed) about what we have to go through because of the injury. I wish there were mentions of people seeing which difficulties in life are from violations of our civil rights...and there are plenty. We can start with the medical establishment's insensitivity to our circumstances. Doctors' offices with bright lights, rapid-fire speaking office personnel, doctors and nurses who do not understand what it means to go through their routines with our TBI. I have to fight in hospitals for quiet waiting areas, slower speakers, etc. while I am managing illness on top of tbi. Just as hospitals and offices must make accomodations for people with other disabilities, they are required to consider us too. Even in county provided transportation, the needs of people with TBI are not accomodated, but the needs of people in wheelchairs are. Even in cross-disability advocacy groups, lights will be brightened for folks who need it, but not dimmed for those of us who need it. Civil rights education should be part of every rehab program for folks with TBI and their families.

Oct 10th, 2013 6:06pm

i hear#9 the most.i'm near 10 years with tbi. i gave all of my 30s to it. i hear all the rest as well. sad because when people don't get the response from me. the response they want to hear, they often begin to drop contact with me. there is so much emotion in loss of old self and change/loss of relationships. yes, i am quite angry. i begin to distance myself too. because old friends and family they are all momentos of the person, i lost.

Oct 9th, 2013 1:34pm

Hi. I want to give some insight on not just the article but the comments provided. In some cases it doesn't matter how much education you give people. As much as we wish those folks were educated on TBIs and the implications we face, the only effective way to teach them is first hand. How many of you would wish this impairment onto anyone else? I won't, not even to my worst enemy. I don't know any of you and I have no idea how far you have gone while facing your impairments to whatever degree they are. But look at where you are, the environment, and if it is not beneficial for you, move. I say that from experience. Because of where I was when I got my TBIs (I have three), I knew only violence accomplished anything. Keep yourself away from that whenever possible. Because of where I was forced to live, I'm aggressive. I'm an a**hole, I can be and usually am rude. And I'm not beyond using force to get my point across. That's not the way it should be. But be so very careful, because there are so many people out there that will take advantage of you, and because of your impairments the system is not in your favor. Nor is society. You have your friends and you have your family. Don't count on anyone else being there for you when the chips are down. Well, I also try to be a Christian, so if religion is important to you, stand firm by it no matter what. In my opinion, my three TBIs (first one was severe, second one was moderate and third one was serious) are not my disabilities, but my impairments. My impairments but society's disability. It complicates my life, but the only people it truly impairs are those that are not affected by it. And if at all possible, contact a nutritionist (not a dietician, a nutritionist) AND an accupuncurist. I stand by both services in how well they helped me. Enuff said....

Sep 7th, 2013 8:10am

After a subdural hematoma, I found that my 'friends' mostly vanished, but I realized who my true friends were. It was heartbreaking to have my best friend say,"You're not the same person," and walk away. I've found myself, even without the support of those who I assumed would have been there for me. If you have a head injury, you should come to terms with your situation, make amends, set goals, and keep working for your dreams.

Sep 6th, 2013 10:49pm

I was electrocuted about 8 months ago while remodeling my kitchen. Someone threw a breaker back on while I was wiring a new oven/range outlet, which runs 220. I was checked out by an urgent care Dr. and told I was "fine" and "lucky." I had minor burns on my hands, and feet where the electricity entered and grounded out of my body. I don't feel fine. I struggle with many memory issues, especially names and dates. I have issues with time. Sometimes I have trouble grasping words while speaking or writing. It's frustrating when people say, "The Dr.says you're OK, so I don't understand the problem." Problem is, my brain was partially cooked.

Sep 6th, 2013 7:29pm

My friend who posted this article on facebook today was much like all of these long before his "brain injury." Especially the grumpy part. So long as I've known him. His whole life as far as I know. Sure he could have died, but there was no damage done, and he really is fine now. This person has always tried to justify the way he acts, and never takes blame for being a nasty jerk when he is. Don't get me wrong. He is a beautiful person, and makes some most amazing art. He just acts so nasty at times, and this is just another thing for him to push the blame on for the way he acts. It's always the fault of someone/something else. What might you suggest for someone like that?

Sep 6th, 2013 2:26pm

I was shot in the back of the head in November 2009 and had nearly half of my cerebellum destroyed; the cerebellum is associated with balance, corordination, fine motor skills, etc. By the end of my hospitalization in a therapy rehab hospital I, for lack of a better word, "recovered" to the point where my injury was hardly noticeable or wasn't noticeable at all. I realized i would experience prejudice for being mentally handicapped, so i worked extra hard to achieve that goal to blend in. I practiced the balancing exercises given by my physical therapist religiously, obtained my drivers license, am on track to receiving my associates, alongwith re-learning how to play the guitar (which asks alot from the cerebellum.) I am currently taking classes at my community college. My TBI is very severe and my memory is affected tremendously, which makes even the simplest of tasks difficult. This article was very thought out and written very well. Everything mentioned is exactly what i experience, i feel alone because nobody is like me. I mean that as in, my case is unique and i feel that i cannot relate to other people who have suffered a TBI. Like i said, this article hits the nail on the head.

Sep 3rd, 2013 5:01pm

Ya, well im 17 now, and I had used drugs quiet often and would do a lot of them, for a long period of time, like, I pushed the limit of what or how many your supposed to take, and not cross it with this drug, you know? but iver been clean for 3 years now, its affected my ability to learn, even read a book, and its that bad. Ive had 4 MRI's and they all indicated that I had brain damage on the right side of my brain, due to drug use. I was told when I was much younger that this is what it said, and yes, you do have brain damage, but lately as I get older people are telling me that I don't have brain damage, and maybe it was just something I misunderstood. and say all these things to the point where im like ok, whatever well I have damage to my brain, it atleast makes me feel better, I think people who say that are so far off. they don't know what its like.

Sep 1st, 2013 12:04am

Hello my name is Teresa I live just outside of Nashville Tn. I am 56 an had a brain annie surgery in 2002.I understand so much these post.I have searched for 10 years to try and get some kind of help and I don't understand why no one can help us.I was a nurse LPN for many years and now I find that we with brain injury's have been dicarted and I for one have given up all hope of getting the right kind of help.My heart hearts for all of us especially the ones of us that live alone with this illness and for myself my family didn't support me at all and my friends just look the other way and say all these things with one more Oh I know getting older I know what you mean and you look great and you are so lucky,well I don't feel lucky and yes I want to die everyday since I know that evey care giver in the health system only says here take this or that anti depressant and see ya later.I for one have had those med's make me feel worse and to be no help at all. Not one time have they offered to look at my brain functions. I have only had one scan done in 11 years because they say my clip would cause problems.I was so hopeful early on that someone would help me,but have found now after all these years it's not gonna happen.I want everyone to know how sad I am for all of us and so wish someone could be some kind of voice for us to get help.I see all the movie stars on TV or people with lots of money get the help they need while we are thrown in a sea of confusion and heartbreak.I was a very independent person worked hard all my life and now and left with a brain injury that no one can either help me with or even talk to me about.I look fine as they always say. I am mobile,but I can't put my clothes together.I can't go to a store without being so overwhelmed that I almost run out as fast as I can.I have decided to just isolate myself at home so I don't have to hear these comments or be around anyone anymore.Just my little dog Mazy and Me.I have read,looked up sites like this,been to countless doctors,counslers,and its all the same take this anti depressant and that's it,that's all...so so sad

Aug 20th, 2013 12:27pm

I hear and read about TBI treatments, but cannot actually find or get any within V.A. ?? Seems to be a lot of hype. I am having angry outbursts and suicidal thoughts, confusion and my car accident was years ago. I just get the runaround and cannot handle stupid psych doctors that sit and watch me talk. Is there any computer mind treatment programs. I cannot work and have trouble filling out requests for help from social security, i\'m broke. Can\'t stand to be around people at all. Don\'t feel safe and others may not be safe around me. I am about to go postal.

Aug 8th, 2013 7:25pm

My accident was August 23, 1997 and the man that was speeding and had no insurance has no idea what I experience. If anything is out of site then it is usually out of mind for me to some extent and another irritability is "well at least you have an excuse"...really people?? When you have had a severe traumatic brain injury and left to survive on disability....then we will talk...or "stop talking about it...nobody wants to hear about it". These things should be posted in every neurology office across the country....

Aug 7th, 2013 6:55pm

An additional problem is with people who have a high IQ and a TBI. High IQ people are perfectionists, driven to inquiry, and used to being able to grasp new concepts easily, among other things. With TBI, the intelligence is still there but the ability to use it has been put through a blender. It is hard work, but cognition can improve thanks to brain plasticity, or ability to constantly change according to its input. A site I found helpful is called Dancing Upside Down, but there is a galaxy of information on the Internet, too. http://www.dancingupsidedown.com/

Jul 26th, 2013 6:42pm

Yes, I, like a majority of those whom have a posted are disheartened at how this injury is portrayed esp. in the media. In 2009, after returning from Iraq for the fourth time, I was at a cookout at a lake when a drunk idiot on a jet ski hit me in the head when I had just jumped in the water to cool off beside the boat. I was in a coma for a month and rehab for about 10 months after (severe TBI). I could use this page to remind me of the things I have gone through and some deficits I still have. It is extremely difficult to deal because it is a HIDDEN injury. I pushed though because I told myself that God and my stubbornness were going to get me better. So much better that I graduated college and can say the I'm about 95% back to the old me. I still have aphasia, dysphasia and some vision issues but I think I'm going to be 100% soon. Please don't think negatively about your situation, pray about it instead.

Jul 26th, 2013 10:32am

My name is Bryan Steinhauer, this article definitely hits home for me. I had a bad brain injury around 5 years ago, when I was assaulted in my favorite bar before graduating college. I woke up in the hospital unable to move or talk and no memory of what happened to me. Google my name, and you'll find out the same way I did. The support I reveived led my recovery, both from people who I knew: my parents and friends. As well as people I met: my doctors, therapists and aides. It's tough enough for young adults to find themselves naturally, throw in a brain injury and often people feel like they have no chance. That's why I started Minds Over Matter, a partnership with the same hospital in which I was an inpateint, Mount Sinai in New York City, to support young adults with brain injury. Please check out the Facebook page or email me at MindsFind@gmail.com if you or anyone you know is in the New York City area and can benefit from such support.

Jul 26th, 2013 10:21am

As with any injury, it is best to be well informed about the road to recovery and what it will take to travel it. Trust me i have a tbi and am fairly travelling the road myself. Sometimes i get a flat and other times it seems too secluded. But keep your eyes on the moment to moment at first , accepting any help kindnesses offered and soon you'll see mile markers of sorts go by. That is a wonderful feeling!

Jul 25th, 2013 10:05pm

I was electrocuted 7months ago and it is very hard people don't know how hard. Another thing you may not want to say is 'oh come on you remember me'. Don't make me feel like I'm stupid. I hate life now people just don't understand.

Jul 25th, 2013 8:38pm

I said it when I went into a home for those with a brain injury after an auto accident(I left there after a couple of months). I, with half a brain, am still twice as smart as most everyone else. Judging by these letters we all are. :)

Jul 25th, 2013 9:36am

Hello everyone, my name is Bryan Steinhauer. Some of you might know me from the news, both about me and made by me. You see I was the victim of a real bad aaaault that occurred right before I graduated college. At my favorite bar, a place that was like my second home! I had no idea what had happened to me, I couldn't move or talk. No memory, and I was being attended to constantly in a hospital while going through painful stretching everyday. I had no idea, until I found the news on my lap top. Google my name, you'll find out the same way I did. Except I took charge and changed that story line. From tragedy to a success, from horror to a blessing. A lot of my story is a result of my hard work, determination and flat out stubbornness. I would not stay down for the count. But I think more then that it was the support I had that made the difference. It was my friends, family, and people I didn't even know before: my doctors, my therapists, my hospital attendees. These people mean the world to me and led my progress. It's because of them I started Minds Over Matter. Anyone with brain injury in the NYC area please check out my organization and the programs I run at Mount Sinai. (www.facebook.com/MindsOverMatterFund) Or email me at MindsFund@gmail.com

Jul 24th, 2013 6:05pm

Ah yes, those dear fools who feel they must say something. It's been nearly 38 years since I was struck by a hit-and-run driver (I was a pedestrian). I lived through 3 skull fractures (basal and mastoid), deafness in my left ear (mastoid bisected the ear canal), and balance issues which remain (although less intense). I have no memory of the accident and no memory of the first 5 days in the hospital; the last 5 days are remembered as a slide show. After more than 3 years of recovery, I returned to university and earned by bachelor degree. I am fortunate, not lucky, to have lived. I am blessed to have recovered so well. It's been an education that has taken me some very interesting places and people. I am now an ordained clergy woman and my experience helps me teach others what to say and what not to say.

Jul 23rd, 2013 10:30pm

All the time: Oh, I know exactly what you mean....I have memory problems too...it\'s an age thing. That is probably the one I hear the most that frustrates me. It\'s not the same...not the same at ALL. I know people come from a place of goodness when they say this, and usually after a few well rehearsed lines in response, they do get it...but it is just so frustrating to constantly hear this.....

Jul 23rd, 2013 9:32pm

i was in a car accident in 83, i feel it was a tuff road n get upset when i think about all the crap n crappy ppl i had 2 deal with. afta 30 years (very nearly - 23/7/83)ive learnt 2 live with my probs, but it doesnt really get much easier. friends have gone, other friends came n went but now ive taken control n it couldnt really be much better.

Jul 10th, 2013 12:22am

I was in government work and suffered 2 tbi's, also in severe chronic pain. Efrafon 2-10( perphenazine & amitriptyline) (which is actually an Anti-Psychotic) BUT DONT BE TURNED OFF/AWAY BY THAT,.......WORKS for those that are agitated by frustration whether from the chronic pain they may be in, or ??. My Psych prescribed it as he knew that it works as he specializes in chronic pain. HANG IN THERE.People will understand if you make them understand;...if they don't F**k 'Em. I sent a test result from a Neuro-Psychologist ( 6 hour test ) to my relatives to help explain why I am the way I am along with downloaded symptoms highlighted by myself, as I can write a lot better than I can speak; the words/ideas flow better when writing. If your people don't want to understand/support you, then find some that will. DAWGSOLDIER.

Jun 21st, 2013 9:40am

This is my first time looking up information on a TBI, I acquired mine in 2002, in a car accident in which I do not remember. It really make me feel weird, to say the least, reading these posts, as I say to myself... oh I know exactly how that feels.....

Jun 1st, 2013 8:04pm

I have had TBI X3. I feel everyone's frustration and you are right unless you have had one, you don't understand and never will. My most recent one was seven months ago. I was in an explosion and had to start all over again with many things. But, I choose not to get angry anymore. I just chalk it up to them being ignorant and "us" being Highly Intelligent!

May 30th, 2013 7:53pm

These are so TRUE and should be put on every refrigerator or common spot of every household where a TBI survivor lives. These are so important!

May 28th, 2013 6:58pm

what does anyone think about a dentist drilling teeth after a head injury///wouldnt this jar the brain a bit too ezpecially in a fragile or damaged state? also the article shown here may be true but i disagree that meds repair the brain as that is not true. it can be damaged. meds only work around the damage, not repair it or the issue the docs are attempting to treat.

Apr 28th, 2013 11:14pm

my car accident was in aug 2008, all my family disowned me after 2 years trying to cope with me as my GP never refeered me to anyone.i am still house bond and have support workers to take me out and go to a day centre once a week for people with brain injury.i have had all of the 9 things said to me and more.i was told i had pcs . i am getting the support now but my kids wont talk to me and have not bothered to learn about my condishion . my GP has no idea about how to deal with me so they dont.i must say that since been on the pcs on facebook and talking to others with pcs i am not as anxious. it helps me just knowing that i am understood .

Apr 25th, 2013 1:40pm

I am living with a person who happens to be recovering from a brain injury. I wonder how many cases of divorce and estrangement from families has resulted, because this is a difficult path and life. The care person is both resented and often necessary. The resentment hurts.

Apr 22nd, 2013 11:44am


Apr 8th, 2013 2:42pm

Yes, I have a brain injury and I have had doctors tell me that I am "Normal" frankly either their education needs to be updated or the MRI machine is faulty or blind not to see that I have three hematomas on the right side of my head and a little hole on my forehead from a traumatic injury to my head and several others from being hit on the head by men that were abusive and falling from the top of a bunk bed. I do have physical signs of a traumatic brain injury and what I don't understand is that the signs all there and they refuse to see it and I don't understand why. I hate it when people make my life harder then it already is. I have had people tell me that "everything will get better, I am a "poisonous women" and "No wonder you don't have friends" kind of thing if they only knew that I have a brain injury and impairments that I have been living with all these years. I don't know what these people expect of me as far a life is concerned. I am able to work but I have a difficult time dealing with people in general. I am "CRITIZED" by men and women and there is no "Wining" with people no matter what I do, how I do things, how I want to do things, and what I say I don't seem to be able to win just get hurt and be taken advantage of, intimidated by people, and last but least the big one "PUNISHED" some how. Having a brain injury is a big struggle in my life because people are mostly the problem.

Apr 8th, 2013 2:21pm

I just read about 9 things that someone should not say to me. And funny that someone wrote these things that \"Should not be said to me\" I have someone in the shadows that is making medical decision and deciding for me what I need and don\'t need and I am really angry for that. I feel that my doctors have not fought hard enough for me. They give in to another doctor to take over and I think that really is not a good thing. I leave hating the doctors that treated me and I have resentful feelings towards them. I have had only I have to say a couple of really good doctors in my life, and since I left him I have never found any other doctors to replace him. I have ended up with stupid ones that have caused me problems and calling dibs on me. I am fed up with them!

Apr 8th, 2013 1:58pm

I was in a car accident and had a brain injury. I am still having trouble with my family understanding why I don't remember faces sometimes, and how I have to recheck everything when I leave the house, they keep saying I have OCD. I can write and still do a lot but sometimes I do talk way to much and can't get myself to show down. I do I get them to help me more, I think I am going to save this and show it to them it tells all I have been feeling. They think because I can think again I am the same person I was before. But, deep down I know I have trouble with certain things. I try my hardest to remember faces but I get so confused sometime and it takes a while for me to figure out who they are. My friends have been the best help when I get to talking they help me slow down when I can't get myself to shutdown. I just want my family to understand I will never be the same.

Mar 25th, 2013 1:23pm

#'s 2,3,4,5,6,and 8. i live my life hearing. it's debilitating and misunderstood. does someone really think i LIKE to be "grumpy" or repeated to over and over? this is not fun for me and certainly not how i planned my life would work out. as for #9....no YOU'RE lucky to be alive...i mostly breathe. big difference

Mar 10th, 2013 8:16pm

I am 2 years in to recovering from a ruptured anuerysm that was coiled, and living with another unruptered anuerysm. My sister emailed me this article and yes I have been dealing with all those 9 no's! I found the following letter helpful and the site: bafound.org A LETTER FROM YOUR BRAIN Hello, I'm glad to see that you are awake! This is your brain talking. I had to find some way to communicate with you. I feel like I barely survived WWIII and am still not quite all in one piece. That's why I need you. I need you to take care of me. As time passes and you and I feel better and better, people, even doctors, will tell you that we are fine, "it's time to get on with life." That sounds good to me and probably even better to you. But before you go rushing back out into that big wide world, I need you to listen to me, really listen. Don't shut me out. Don't tune me out. When I'm getting into trouble I'll need your help more than I ever have before. I know that you want to believe that we are going to be the same. I'll do my best to make that happen. The problem is that too many people in our situation get impatient and try to rush the healing process; or when their brains can't fully recover they deny it and, instead of adapting, they force their brains to function in ways they are no longer able too. Some people even push their brains until they seize, and worse... I'm scared. I'm afraid that you will do that to me. If you don't accept me I am lost. We both will be lost. How can I tell you how much I need you now? I need you to accept me as I am today... not for what I used to be, or what I might be in the future. So many people are so busy looking at what their brains used to do, as if past accomplishments were a magical yardstick to measure present success or failures, that they fail to see how far their brains have come. It's as if here is shame, or guilt, in being injured. Silly, huh? Please don't be embarrassed or feel guilt, or shame, because of me. We are okay. We have made it this far. If you work with me we can make it even further. I can't say how far. I won't make any false promises. I can only promise you this, that I will do my best. What I need you to do is this: because neither of us knows how badly I've been hurt (things are still a little foggy for me), or how much I will recover, or how quickly, please go s-l-o-w-l-y when you start back trying to resume your life. If I give you a headache, or make you sick to your stomach, or make you unusually irritable, or confused, or disoriented, or afraid, or make you feel that you are overdoing it, I'm trying to get your attention in the only way I can. Stop and listen to me. I get exhausted easily since being hurt, and cannot succeed when overworked. I want to succeed as much as you do. I want to be as well as I can be, but I need to do it at a different pace than I could before I got hurt. Help me to help us by paying attention and heeding the messages I send to you. I will do my part to do my very best to get us back on our feet. I am a little worried though that if I am not exactly the same... you will reject me and may even want to kill us. Other people have wanted to kill their brains, and some people have succeeded. I don't want to die, and I don't want you to die. I want us to live, and breathe and be, even if being is not the same as it was. Different may be better. It may be harder too, but I don't want you to give up. Don't give up on me. Don't give up on yourself. Our time here isn't through yet. There are things that I want to do and I want to try, even if trying has to be done in a different way. It isn't easy. I have to work very hard, much harder, and I know that you do too. I see people scoff, and misunderstand. I don't care. What I do care about is that you understand how hard I am working and how much I want to be as good as I can be, but I need you to take good care of us, as well as you can do that. Don't be ashamed of me. We are alive. We are still here. I want the chance to try to show you what we are made of. I want to show you the things that are really important in life. We have been given another chance to be better, to learn what is really important. When it is finally time for our final exit I would like to look back and feel good about what we made of us and out of everything that made up our life, including this injury. I cannot do it without you. I cannot do it if you hate me for the way being injured has affected me and our life together. Please try not to be bitter in grief. That would crush me. Please don't reject me. There is little I can do without you, without your determination to not give up. Take good care of us and of yourself. I need you very much, especially now. Love, your wounded brain ©1996 Stephanie St. Claire May be reprinted for personal, not for profit use. Livetulaff@aol.com Contact me if you have any questions or comments.

Feb 19th, 2013 7:13pm

of course they only wanted to share a few of the common misspeaks, but I see they left off the other side of 5/7. in some cases, yep, a survivor gets all kinds of support with people doing things for them that they stopped being able to do themselves because of the injury and yep, it can continue past the need as the survivor recovers... but in other cases, a survivor's injury isn't obvious to people and no one realizes they need help and no one offers because they aren't aware and then the survivor keeps trying to function beyond their capacity. and often, this worsens symptoms... then finally, people notice they need help;. . and so please don't think that all survivors need you to tell them to try doing it themselves . . because some survivors need you to encourage them to let you do some things for them so that they aren't constantly living with brain overload. hope I'm making sense to everyone. some of this stuff is difficult to explain... and then, of course my aphasia and difficulties being succinct get in the way lots of the time

Feb 18th, 2013 3:18pm

TBI is certainly the Cinderella of all disabilities. Ignorance is common among most people. Very sad that because it's so often a hidden disabilities it's ignored and totally misunderstood. I often feel that it's portrayed so badly in television, I mean who ever really wakes from a coma to just be the person they were before with no apparent injury? It makes me so mad as this is one way it could at leat be shown to cause life changing aspects to the person. I wish that there was better education and information, sadly it's mostly only looked at when it happens to a family.

Feb 18th, 2013 11:08am

I have heard them all. It is immensely frustrating.

Feb 18th, 2013 11:04am

This article is so true! I would add two more things "not to say to someone with a brain injury." They are: 1. I know exactly how you feel. 2. Oh, it happens to all of us as we get older! Doris Sanders

Feb 11th, 2013 2:56pm

So valuable--but not just because of the (spot-on) list, but especially because of the well-articulated, insightful explanations. Ten+ years post-injury, I've learned a lot about managing my "new" self, strategies, listening to my body, and ignoring well-intentioned but ill-informed comments. But any of the above remarks can still be frustrating—especially when I'm highly symptomatic. Just one thing to add to #1: Looking "normal" also can be a distinct disadvantage in terms of physical safety. My balance disorder and sensory processing issues make it even more difficult to function in "crowds" (ie, anyone besides me!) Having a service dog helps my stability, keeps people out of my personal space. The irony: I "look normal" and people say so! Note to fellow tbi-ers: don't give up, but do recognize realities of your needs. (It's taken me over an hr to write this; now it's nap time. When I wake up, I can sporadically be found on twitter: @nyoderharris)

Feb 5th, 2013 3:21pm

This is excellent. I work very hard with my staff here at Learning Services to encourage independence and use the positive principles of PEARL. Also, Mandt training on relationships is an excellent source!

Feb 4th, 2013 2:31pm

I am fortunate that NO one said those things to me. They could have or might have thought them, and one person who is a close relative has said to me, "You remember more than you let on, you're just using it as a crutch." Man, that hurts. I just can't imagine using my brain injury as a crutch. It ISN'T an excuse, it's a fact. I do every single thing I can do to improve my memory and utilize compensatory strategies always. I'm human though, I get lazy and stop doing what I should or don't try something because I don't think of it until it's TOO LATE.

Feb 3rd, 2013 8:57pm

Here I go again! One person wrote they do not like it when someone tells them: \"Make a list\"; \"Use post-its.\" I make lists ALL the time - most people do, brain injured or not. \"Use post-its\" AGAIN - - I use them regularly in my Daytimer,etc. to draw my attention to an important appointment. They are a VERY helpful. To use some Jamaican dialect, \"Try it, nuh?\" Margaret (who lives with moderately severe brain injury :))

Jan 21st, 2013 3:45pm

Excxellent list of prime importance , Congratulations.

Jan 19th, 2013 4:01am

Assessing for TBI and other neurologically born causes of behavior disturbances is so important for us who are in the helping field. Sometimes we want to get straight to helping through listening for psychological disturbance born of relational life history, but we need to pay attention in the initial assessment to their medical and physical histories. TBI, thyroid, diabetes, and other body and brain problems are sometimes a source of great confusion and discomfort that can cause behavioral and emotional issues for client/patients. So important!

Jan 16th, 2013 11:03am

I'm nearly blind with tears as I write this. Since that fateful day in 2009, I have wished I hadn't protected my face. In my darkest moments, I wish I hadn't survived. I wish there was some other screaming tell-tale sign that qualifies the magnitude of destruction of my body, my spirit and my brain. What I have suffered most from since my accident is mass ignorance. If you survived such horrible atrocities, how are you able to write/talk/look/act like this? You must be faking/lying/exaggerating. Who would lie about something like this?! This DID happen, and I live every day in pain, despair, and without true understanding from anyone about what happened to me. I'm to the point that I want to shave my head, show the world my terrible scars. But I already know people just don't care..

Jan 14th, 2013 8:09pm

I agree with everyone and especially the Oct 13th, 2012 2:42am comment jumped out Thanks for the article, it reminds me how far I\'ve come and how much I\'ve \"taken\" from others. If we could all treat each other with this kind of respect and kindness, brain injury or not.

Jan 10th, 2013 10:03pm

Yes, I agree - because it is not obvious from the outside, people who have know you before the BI can't guess what is going on in your mind. You still look the same but inside things are different. It as taken me nearly 6 years to feel "normal" again, though I still have spells of extreme tiredness but getting over that now thanks to a few things that I have discovered that enhance repair. Will be sharing information on my website soon,and anybody who has found certain things to be helpful in their recovery, please feel free to contact me on thathealingtouch@live.com

Jan 10th, 2013 3:42am

So perfect... I hear all the time, you look fine there is nothing wrong with u. Or they want to compare us ( survivors) to there world. They have no idea how hard it is to act all the time.

Jan 9th, 2013 10:24pm

I'll add my own... You're just going through menopause. Really?!!! When you struggle with recovery, you become a stranger to everyone including yourself. The anger, concentration issues, sensitivity to noise and many other things continue to be a problem but everyone around you gets tired of hearing it and feels you use it as a crutch. No one who is stuck in this place wants to be here. If we could go back to the way things were before we would.

Jan 9th, 2013 9:39am

I had a sub arachnoid hemorrhage in 1988. I had surgery and am lucky to be here. I hadn't seen my Mother for quite a few years but my Dad managed to track her down when they only gave me a 50-50 chance of survival. I was in hospital for a total of 3 months and it was hard going trying to get back on my feet, literally. My Mother being her usual maternal self decided to come and see me when I had been back at home for only 48 hrs.Baring in mind what my Dad had told her about my illness the bloody woman walked in and said " oh I've come all this way and you look alright to me" needless to say it was a short visit and a long way home. But to come back to the point, it is sole destroying when someone says's that to you. Especially if you and doctors, physios, family and friends have got you to where you are. So if you can't think of any thing positive to say, don't say owt.

Jan 9th, 2013 12:30am

Further insights are shared here: -http://www.mylatentself.co.uk/shared-insights/you-think-i-know/

Jan 8th, 2013 7:34pm

I suffered my TBI in 87, had extensive stroke rehab,but they really couldnt do much for the memory loss. One of the least favorite therapies I attended twice daily was Speech Therapy, so proving those negative Drs wrong I went back to College and became a Speech Pathologist...........so I could torture folks too :P. I dont necessarily take the 9 things listed as negatives: Yes I seem normal........ummm, IM NORMAL, I am handicapped. I can't do math and it hurts like a SOB to walk across a parking lot due to the crushed pelvis. I take every day like a gift. I can choose to love it or choose to hate it. I am not the same person I was before the accident. IM BETTER! I am one strong person. Most folks would not have been able to make it thru the things I had to live thru. I remember the accident daily since I have pain and migraines and seizures related to the accident so to the person who was told to get over the accident......ignore the stupid person who said that to you. What happend to you was a gift from God. You were given the chance to start over and live a life differently. You will feel the pain for the rest of your life, you will not always understand things that are going on around you, but you will always see the stupidity in folks who are so called "normal".

Jan 8th, 2013 6:07pm

Very helpful, thank you for writing it. Love the easy to read list format. For more tips I recommend checking out this article as well: "What Brain Injury Survivors Want You to Know".

Dec 31st, 2012 12:08pm

Why can't you say Think positively? 6 years ago my dear son had a car accident. It was 3 months of a coma and 3 months of rehab. If I had not been positive, with all due respect, they would have pulled the plug. He has frontal lobe damage and left temporal. However, as much as it annoys him, this old broad is glad and lucky he is here.

Dec 28th, 2012 8:41pm

its too bad that people dont knwo more about how to acce[pt others with a bi . we are not aliens ,we just dont make sense sometimes. for me i guess i trey to isolate myself because i dont fit in . its not like we can say 'hi nice to meet you -btw i have a brain injury...

Dec 21st, 2012 10:23am

Don't take everything so personally. I have come to terms with my processing speed so I just say ya, I am.

Dec 20th, 2012 2:37pm

I suffered a TBI back in 1988 and I still have ongoing problems with memory and getting things in the correct order. In spite of this I am a college student with a 3.8 GPA. A TBI is not like losing part of your memory alone, or not being able to talk to strangers or even people that you know because of anxiety. It is more unpredictable than that. Just make sure that your loved ones know this. If things were straight forward it would be simple but unfortunately a TBI is terribly complex, though not insurmountable. Be patient when things go badly, it is usually only a temporary episode, and know your triggers for what can cause problems.

Dec 20th, 2012 2:27pm

So...what are appropriate things to say?

Dec 20th, 2012 1:06pm

I think that another "thing not to say" would be talking to a TBI survivor like they are a child or some how incompetent. Another one is telling me a story about something bad in their life....like that mitigates the injury.

Dec 19th, 2012 7:53am

Thank-you for the comments, We really need to educate everyone about brain injury so it can be more understood. I have problems with a lot of Doctors. I had my heart Doctor tell me to come back when I get myself straighten out. I was shaking because I am very sensitive to lights and noise. We don't need to go to a Doctor and be treated with disrespect! Thank God I have a good Neurologist.

Dec 19th, 2012 12:07am

Thanks, I shared this on my FB page, because SO many people (even family members) should know this stuff...I gave you credit too;)

Dec 18th, 2012 4:53pm

Yes, I\'ve heard most of these and \"Oh, I forget too, or I do that too,\" dismissals of my injury. It hurts to hear these things, because I can feel inside my brain where I can\'t get it to work. I wrote poems to deal with the hurtful things people say, to deal with the losses I suffered after TBI. Now I have a book out that is helping people find words for losses after BI and hope for creating a new life! Doctors are giving it to patients!! Sadly, I still hear these things. We have to teach the world about BI, so others receive the compassion that helps us heal from devastating losses.

Dec 18th, 2012 12:34pm

I can relate as someone with brain injury to all most all of the 9 signes you pointed out in these artical. People "Normal Non Disabled just dont get it and i think at times dont even try to get it

Dec 18th, 2012 10:10am

The story of my life.

Dec 18th, 2012 10:03am

For every person who has had a TBI. Thank you soooo much for sharing your thoughts and feelings. You are right! We don't understand. I am a speech language pathologist who works in part treating TBIs and in addition had the trauma of my husband experiencing a frontal lobe TBI in 2004 and at times I still just don't get it. But as a therapist I try to help people find and do what works. As a wife and MOM I just try to love and be supportive. Please don't stop telling your stories. WE CARE and need to know. The anger has lessened and is still improving. The preplanning and hope has improved. The initiation is still lacking but my love and acceptance is growing stronger every day and I need your stories. Thank you.

Dec 11th, 2012 7:11pm

I get those days, Oct 12, 9:50. I have nothing but love and Sympathy for my fellow TBI survivors.. My accident was back in 07\'.. seems like yesterday though, and it has impacted my career path, etc.. I am not everyones bestfriend.. people just don\'t get me, get pretty aggressive after angered while drinking, and have NO DIRECTION. I feel like such a disappointment! Stuggling to keep my head above water as I jump from job to job! Recently my boyfriends mother told me that I needed to move on from my TBI cuz it was only holding me back. She says that holding onto it is doing nothing for me and wonders where it will get my family, ugh! I took it pretty hard! Currently, not drinking much alcohol, waiting tables and trying to find a job where I can help others in the community!

Dec 10th, 2012 3:33pm

I get angry when I hear "Make a list" or "Use Post Its." All it tells me is that they don't get it and I'm back at square one.

Nov 28th, 2012 9:30am

Great info. I\'d add #10: \"Everyone forgets things.\" There is a big difference between forgetting something and not remembering something because of a TBI.

Nov 26th, 2012 12:18pm

when i was 11, i got hit by a truck 2 times(the same truck. i only remember waking up in a hospital, with no memory!. i only knew my father, not even myself. the tbi left a serious impact on my life still to this day i can honestly say it got the best of me. i wanted to play football when i got older but couldnt pursue it due to my tbi. it changed my life damatically and have no choice but to cope with it cuz its more than 10 years later and still have most of the problems, therapies only helped a little. i get migraines and seizures and its not fun. i would say the worst thing to tell a tbi patient is that they will be ok cuz when it all comes down to it, its not and people get angry for that reason.

Nov 22nd, 2012 8:15am

This is all too true!

Nov 22nd, 2012 1:31am

I suffered a TBI in 1995 and I got so sick of people telling me I was lucky to alive. I would think, "No I am not. I'd be lucky if I was dead because living with an injured brain is pure hell. You have no f!@#$%^ clue how s!@##$ this is!" Then I would be pissed-off and depressed, so DON'T TELL SOMEONE WITH A TBI THAT THEY ARE LUCKY TO BE ALIVE!

Nov 19th, 2012 4:32pm

I have had two tumors removed and my ongoing symptoms is forgetting things. Probably more severe than I admit. I just do not let things bother me (most the time).

Nov 14th, 2012 9:38am

I have tbi and I have heard these comments so many times because people do not understand tbi. This article made me laugh because it is true. The only people who understand arethe ones who are educated about tbi. I have a friend who was educated by his girlfriend ( she works with tbi ) and he told me he had no idea how difficult it is to live with tbi. This made me happy to be understood. It feels good to have recognition for living with tbi.

Nov 9th, 2012 2:27pm

Thank you! This article, and the comments are great!

Oct 19th, 2012 8:20pm

Don't EVER start a question with, "Don't you remember?..." My family has worked very hard not to use those 3 words with me in the 16 yrs. since my brain tumor was removed and the 4 years since officially getting the "memory impaired" diagnosis.

Oct 15th, 2012 9:58pm

My husband's brain injury was in 1984 this is still true today.

Oct 13th, 2012 12:52pm

Also I would say memory issues are common to us with a TBI, and when we forget something a loved one might say, "Oh, I forget things too. Don't worry about it." Nobody's memory is perfect but a TBI survivor that forgets where he/she parks their car every time or always forgets the name of a new person this is an unfortunate everyday experience that causes us much grief. Don't try to empathize with a TBI survivor's problem if you have never had a TBI, it is demeaning and causes more anger and frustration.

Oct 13th, 2012 2:42am

Retpe it on a Word document and add it via a photo upload. I get these comments alot from my kids, they seem to forget that a Stroke is a brain injury and they know the answers to all of this, they were warned my personality would change and I would have good days and bad drays, but I know my good and bad ones and when to stay home and let things heal and respond to my own living kindness. Some times we don't believe we are lucky to be alive at that particular moment for a brain injury robs you of many things. It you are lucky enough to survive, you will understand those days that you feel like staying home and not opening the door . Some TBI patient's cannot handle a great deal of ambient noise or light.

Oct 12th, 2012 9:50pm

I would love to share this on facebook, it totally describes what people say and have said to me, especially the "you seem fine". However when I try to share, I get the message that Java Script is not enabled. Is this a facebook problem, should I try later. I love the article so, I want to share it.

Oct 12th, 2012 8:11am

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