9 Things NOT to Say to Someone with a Brain Injury

Marie Rowland, PhD, EmpowermentAlly
9 Things NOT to Say to Someone with a Brain Injury

Brain injury is confusing to people who don’t have one. It’s natural to want to say something, to voice an opinion or offer advice, even when we don’t understand.

And when you care for a loved one with a brain injury, it’s easy to get burnt out and say things out of frustration.

Here are a few th ings you might find yourself saying that are probably not helpful:

1. You seem fine to me.

The invisible signs of a brain injury — memory and concentration problems, fatigue, insomnia, chronic pain, depression, or anxiety — these are sometimes more difficult to live with than visible disabilities. Research shows that having just a scar on the head can help a person with a brain injury feel validated and better understood. Your loved one may look normal, but shrugging off the invisible signs of brain injury is belittling. Consider this: a memory problem can be much more disabling than a limp.

2. Maybe you’re just not trying hard enough (you’re lazy).

Lazy is not the same as apathy (lack of interest, motivation, or emotion). Apathy is a disorder and common after a brain injury. Apathy can often get in the way of rehabilitation and recovery, so it’s important to recognize and treat it. Certain prescription drugs have been shown to reduce apathy. Setting very specific goals might also help.

Do beware of problems that mimic apathy. Depression, fatigue, and chronic pain are common after a brain injury, and can look like (or be combined with) apathy. Side effects of some prescription drugs can also look like apathy. Try to discover the root of the problem, so that you can help advocate for proper treatment.

3. You’re such a grump!

Irritability is one of the most common signs of a brain injury. Irritability could be the direct result of the brain injury, or a side effect of depression, anxiety, chronic pain, sleep disorders, or fatigue. Think of it as a biological grumpiness — it’s not as if your loved one can get some air and come back in a better mood. It can come and go without reason.

It’s hard to live with someone who is grumpy, moody, or angry all the time. Certain prescription drugs, supplements, changes in diet, or therapy that focuses on adjustment and coping skills can all help to reduce irritability.

4. How many times do I have to tell you?

It’s frustrating to repeat yourself over and over, but almost everyone who has a brain injury will experience some memory problems. Instead of pointing out a deficit, try finding a solution. Make the task easier. Create a routine. Install a memo board in the kitchen. Also, remember that language isn’t always verbal. “I’ve already told you this” comes through loud and clear just by facial expression.

5. Do you have any idea how much I do for you?

Your loved one probably knows how much you do, and feels incredibly guilty about it. It’s also possible that your loved one has no clue, and may never understand. This can be due to problems with awareness, memory, or apathy — all of which can be a direct result of a brain injury. You do need to unload your burden on someone, just let that someone be a good friend or a counselor.

6. Your problem is all the medications you take.

Prescription drugs can cause all kinds of side effects such as sluggishness, insomnia, memory problems, mania, sexual dysfunction, or weight gain — just to name a few. Someone with a brain injury is especially sensitive to these effects. But, if you blame everything on the effects of drugs, two things could happen. One, you might be encouraging your loved one to stop taking an important drug prematurely. Two, you might be overlooking a genuine sign of brain injury.

It’s a good idea to regularly review prescription drugs with a doctor. Don’t be afraid to ask about alternatives that might reduce side effects. At some point in recovery, it might very well be the right time to taper off a drug. But, you won’t know this without regular follow-up.

7. Let me do that for you.

Independence and control are two of the most important things lost after a brain injury. Yes, it may be easier to do things for your loved one. Yes, it may be less frustrating. But, encouraging your loved one to do things on their own will help promote self-esteem, confidence, and quality of living. It can also help the brain recover faster.

Do make sure that the task isn’t one that might put your loved one at genuine risk — such as driving too soon or managing medication when there are significant memory problems.

8. Try to think positively.

That’s easier said than done for many people, and even harder for someone with a brain injury. Repetitive negative thinking is called rumination, and it can be common after a brain injury. Rumination is usually related to depression or anxiety, and so treating those problems may help break the negative thinking cycle.

Furthermore, if you tell someone to stop thinking about a certain negative thought, that thought will just be pushed further towards the front of the mind (literally, to the prefrontal cortex). Instead, find a task that is especially enjoyable for your loved one. It will help to distract from negative thinking, and release chemicals that promote more positive thoughts.

9. You’re lucky to be alive.

This sounds like positive thinking, looking on the bright side of things. But be careful. A person with a brain injury is six times more likely to have suicidal thoughts than someone without a brain injury. Some may not feel very lucky to be alive. Instead of calling it “luck,” talk about how strong, persistent, or heroic the person is for getting through their ordeal. Tell them that they’re awesome.

Posted on BrainLine October 10, 2012. Reviewed July 25, 2018.

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

Comments (454)

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

For 9 a lot feel the wish that luck was not on their side

I really don't know how to start but will like to know how to go about it, my wife currently undergoing brain tumor but hasn't had any surgery yet, the brain tumor was discovered when she was first pregnant and we were able to pull through with the LORD 's help, also buy applying a medication (Dostinex) advised by her doctor, reading few of your comments, on my opinion and which I stand to be corrected please, it seems to me that surgery isn't the best or first option here, because with the medication which she has been taking for over 4 years now, we had two loving kids and I can tell you that they are very healthy and blessed to the glory of the LORD, I am with your guys in prayers, I would like to know if there is any medications expert of Dostinex that could be of help or if anyone has ever tried it as well. Thanks

I have a 6 inch scar across my face after a car accident and I have to get plastic surgery and a boy I know is bullying me because of it and I choke and can’t defend myself

I recently was in a car accident and now I have a brain injury and my mom has said all of these to me and it makes me fell worthless and I do struggle with depression and I’ve thought about killing myself and I hate it that they baby me I have a 6 inch scar on my face and that’s why they stare at me.

Over 14 years since my accident. The more I learn to set up systems to cope, the more I hear comments and get anger from others. They don't think there is anything wrong and just call me b**chy. Everyday is a struggle and I have learned to just stay away from people that don't get it. Sometimes that is difficult and the anxiety and depression explodes.

Thank you for this site and all the comments and replies. I am a concerned mother who is hanging on emotionally by a thread. My son started MMA a few years ago. He only had one fight in the cage and won quickly but it was all the practices that concern me. I know (mothers intuition) he has a TBI from all the hits to his head. He has the cauliflower ear which is a big indication of a hard hit. Anyway, he has changed dramatically. He seems to have no self control, outbursts that are quickly followed up with peace and harmony as if it never happened. He is forgetful, I cannot tell you how many times his keys and wallet go missing. Will open the fridge door and walk away forgetting to close. Simple things a child can do he seems to now just forget. He was not this way prior to MMA. He has been arrested 2x and both cases are still pending. He either quits every job he has due to lack of focus, and drive to hold it down, or gets fired for not showing up. I want him tested and do not even know where to begin. I am waiting on his insurance information from his father to determine if he has counseling services as I feel he needs a therapist STAT. This possibly could be a venting email but any help or advice is greatly appreciated!

I understand what you are going through. I am very sorry about it all. I am TBI "survivor." And willing to help however I can. If you would like to talk please reply. We can schedule date/time that is mutually convenient.

I would suggest a spect brain scan. This will show what mri does not.

I had an accident 11 years ago and was paralysed down one side and my memory had gone. My memory has came back to me but I still have short term memory. I can't stand and have a debate about something, I need to take my time and think what I am going to say. I have just been reading that 80 percent of suffer a brain injury results I divorce and guess what I am getting divorced, but since seperating I feel a new man and my ex isn't doing everything for me and running my life. Reading what u shouldn't say to somebody with a brain injury she said them to me all the time.

I understand what everyone is saying but like always if I want to know I will have to read it all again. I had my wreck February 2012 going on eight years in recovery now. My family keep telling me I'm doing better but I don't see it because of the battle each and every day. I have to have my phone next to me so I can ask it how to spell words. I'm 59 years old and I thought that I had everything by the tail. My own company, Climbing and working high off the ground is out of the question, going under ground no way now, welding, running a torch, running equipment, driving trucks. No more sports no more hiking and free hand cliff scaling. I just found out last weekend that I can't swim any more and I was always like a fish in water but no longer I'm more like a rock now. I know I have said a lot of thing that I lost from that day but the good Lord has been carrying me for a long time and my family has been awesome taking care of me and my wife has been a real life saver. Today was a very bad day and that is why i looked this up so I could understand that I'm not the only one that feels lost all of the time. I will be praying for all of you and know in your heart that we can truly beat this thing or learn how we can deal with it on a daily basis. Thank you for your help, Robin

Hi,
I had a serious accident Feb 2017. I had 4 bleads to my brain, and so many other problems and with each I need an operation. I had 9 operations and two failures which I needed to have redone as they were on my face,
I smashed my eye socket and l needed a titanium plate to give my left eye something to be attached to. If I refused I would have ended up with deformed.

This is a fantastic article. Although I have ptsd rather than a traumatic brain injury, this article captures three very destructive messages I’ve been unlucky to receive. I’ve lost count of how many times I’ve been admonished to be positive and be grateful for what I have. Look at what I do for you is another destructive comment, especially when people assume they know what I need better than I do.

I RECEIVED MY TBI WHILE IN THE US ARMY, I HATE BEING PLASED IN THE SAME GROUP WITH VETERANS WHO WERE IN COMBAT, MY INJURY HAPPEN WHILE ON A TRAINING EXERCISE. I WAS IN A JEEP ACCIDENT WHEN I WAS FOUND I WAS UNCONCUSSION FOR AT LEASE 12-15 HOURS EXCEPT FOR 3 SHORT MINUTE OR TWO AND NOT CONCUSSIONS ENOUGH TO HELP WITH MY TREATMENTS FOR MORE THAN A DAY. I WENT THROUGH 3 OR 4 DARK PERIODS THE LONGEST ONE WAS FOR ABOUT 30 HOURS BUT I WAS STILL NOT REAL CLEAR HEADED.
I HAD A PUNCH OVER THE LEFT EYE; BECAUSE IT WAS BLEEDING. EVEN TODAY I REMEMBER NOTHING ABOUT THAT INJURY THE ONLY THING I DO REMEMBER THAT EVERY ONE OF THE BLIND SPELLS BEGUN FROM THE LEFT EYE, THE LONGEST SPELL WAS FOR ABOUT 15 HOURS.
I WAS IN LANDSTHUL HOSPITAL IN GERMANY FOR 113 DAYS AND DURING THAT PERIOD ALL MY LETTERS TO AND FROM HOME WAS READ TO ME, I COULD NOT SEE WELL ENOUGH TO WATCH TV. I WAS NOT ALLOND TO WALK OUT OF THE WARD WITHOUT AN ESCORT. WHENEVER I STARTED GETTING BETTER AND WALK AROUND ON MY ON. MY DOCTORS SAID THEY HAVE DISCHARGE AND SEND ME BACK TO MY COMPANY ON LIGHT DUTY OR THEY WOULD SEND ME TO WALTRE REED AND BE GIVEN A MEDICAL DISCHARGE AND COMPENSATION. THEY ALSO SAID THAT MY BRAIN WILL HEAL ITSELFI FOUND YEARS LATTER THAT WAS NOT POSSIBLE. I WENT BACK TO MY MILITARY COMPANY FOR THE NEXT 16 MONTHS; BECAUSE MY FAMILY DID NOT ME TO BE NOT WORKING FOR MY MONEY.
AFTER GETTING DISCHARGE ABOUT A YEAR LATTER MY VISION STARTED GETTING REAL BAD, I WENT TO HOUSTON, TEXAS VA HOSPITAL ONLY FOR HELP WERE I WOULD NOT LOSE MY JOB; HOWEVER ALL MY MILITARY AND MEDICAL RECORDS WERE LOST AND I WAS TREATED SO BAD, LIKE I WAS EITHER CRAZY OR WANTING TO GET WHAT THE PSYCATRISTS CALLED EASY MONEY. NEEDLESS TO SAY I GOT NO MEDICAL HELP AND I LOST MY JOB.
FOR MANY YEARS AFTERWARDS MY MEDICAL DOCTORS, FAMILY AND OTHERS SAID TO ME ALL THE STATEMENTS ON YOUR LIST AND MORE I BEEN TREATED AS THOUGH IT WAS ONLY A MENTAL PROBLEM.
I HAVE NOTHING TO GAIN BY LYING, I LOST JOBS THAT WOULD PAY ME MUCH MORE THAT I COULD RECEIVE FROM VA COMPENSATION
I AM NOT CRAZY MY PROBLEMS ARE REAL AND I DO NEED HELP

Good luck with all you do I’m taking care of my friend Paul who suffered a tbi dry dick fell off an air craft carrier they do not help him I’ve tried many areas I’m the one person who understands and sees what he’s going through what he deals with.. I can only say through my experience with Paul is stay as strong as possible God.Speed

I am so sorry that you were treated that way. I also was in the military. I and went too was told that my problems were in my head. So I fired my primary doctor. You have many more options that you were told. I had to keep after it. Don't let the doctors and administrators dictate to you what they want. When you went in to the military you have rights. Keep talking to people and don't get pushed into what they want. They are only trying to weed out the people who are claiming injuries that were not serious. Just keep fighting. It took me 9 years to be classified as having an injury that was military related.

Hope things work out for you. Just keep fighting until they do something. You have legal help through the VA. Just keep going.

AT Anderson

Hi, thankful to have this site, very informative. Can I ask, is it ok to correct a loved one with a fairly new tbi, when they’re being rude or insensitive? I understand the lack of sensitivity and la k of a filter are part of the injury but wondering what’s best way to handle inappropriate reactions. Sometimes my fiancé will be very short/rude or insensitive to myself or to others, gets very irritated and frustrated easily, again I know it’s due to the Tbi. I’d like to know if I should nicely ask/mention that the way he responded or behaved wasn’t kind or polite. I certainly don’t want him to feel worse, just wanted to know if I should address it at all. TY in advance. Prayers and hugs to all.

I sustained a brain injury in 2000 after a roof weighing 1 1/2 Tons collapsed on me. My former husband 'accidently' ran into the structure twice with a heavy road grader after sending me underneath to rake. He became my caregiver, even though we had been separated. My family fought I was fine, except for nerve and structural injuries. He moved me back to our home on10 acres and abandoned me, turning off water to house, removing the roof for a year, and much more. He had me convinced I was crazy. My mother became disabled 4 years later and since I 'wasn't working' I went to stay with her. My mother, meaning well, but always saying the wrong things by putting me down. I became so self conscious about talking and saying something wrong that I isolated myself from family and friends. I went to a wedding shower for my niece and I said something that my niece's friend misunderstood, yet I still do not know what I said. I was interpreted as saying something negative about my niece's upcoming wedding. I was thrilled about her marriage and husband, yet I was not invited to her wedding and had to find someone to drive my mother and sister, I was not invited to her baby shower. I have been shunned by the family ever since. Having time to think since then, I wondered if my mother might have helped the situation if she had explained to my niece that the injury to my brain, words for what I mean come out wrongt. I can say something, totally unaware of the words I use, which I did often, and remind her how thrilled I was about her martiage. My sister lectured me about using my filter to manage my words. Other's may disagree, but I personally feel you could mention to a hostess, a friend, or even the person offended that because words can be difficult to use correctly after a brain injury do to the part of the brain that suffered the insult, to please not be offended or take my words spoken literally, instead, ask me what I meant before judging and condemning, especially words that may be contrary to what I mean. While in a BI group, a couple members would constantly speak out in argumentative rude tones. Being aware of their particular injuries, no one was offended or uncomforable. Unfortunately, I cannot live only with brain injured people who understand, I have the rest of the world to live in, too. Explaining a brain injury to others is fruitles, how can they possibly understand? Although, to inform them that a person with a brain injury is likely already aware they can offend people without being meaning to, some may understand. My sister tried the nudging and giving me signals when I said things wrong. Instead, she confused me since I could not remember what the nudge was for of her signals. I was only aware that I messed up but where? I have a couple friends who are aware of my injury. They do not understand everything that I go through, but they do have compassion and do not judge me if I say something the wrong way. One friend actually spoke up and said, "On yes, I know what you mean, . . . ." Then she would repeat what my message was intended to be, and smoothed everything out. It has been 19 years since my injury, yet I was traumatized by being shunned by family, which I felt could have been avoided if someone in my family could have explained my injury to them. I tried, unsuccessfully. It was too emotional an issue for me, and I felt as though I was in a defensive mode trying to make excuses for screwing up. Now, I basically am alone. I shop at night when stores are not crowded, and I turn down invitations for gatherings. I am learning that being alone is not good for people. I need a place that is simple, where someone could direct me if I get overwhelmed, yet have some feeling of independence. Hopefully, not having to live in a relatives home, which would be hard. I also want to mention the mother who's son was a boxer. Neuropsychologists are doctor's that have diagnosed my issues that are most difficult for me. Your son needs to be officially diagnosed in order to get the right treatment, which could be medication, rehabilitation, which does help tremendously.
Sorry my post is so long but it takes me a lot of words to say what I am trying to address.
Thanks,
Marcia

Try to remember the situation and see if it is a recurring situation, if so it might jab their emotion in some way, either try to talk about it to them, or I find it best to talk about it as if you are talking about someone else having this problem, if they agree that they also find it difficult then they understand, if they agree and don’t seem to recognize it about themselves, they most likely don’t realise. Be careful not to offend them when talking to them because they can anger quickly, talk sistematicaly and carefully and just let them know, if they seem to get upset, lead the conversation elsewhere.

After reading this article, I realize in my role as a caregiver to my husband I have been guilty of saying some of these things. Over the last 18 mos, My husband began acting strange (slurred speech, disappearing, irrational behavior, small fires, aggression, sudden collapsing, almost rebellious teenager behavior). Turns out a diseases was eating at his brain (the frontal lobe) and affecting all parts of the body. On December 30th, I came home from work and found him lying on the floor. Turns out he had a hematoma, one fresh on the right side and an older on the left, all due from falling. He was rushed to hospital. I stood in fear as they cut his clothes off him. On December 31st, he had his first surgery. Jan 2nd, a shunt because he was draining too much fluid in the brain. February 16th, his third. Instantly, everything we had experienced was prior was amplified. He was very aggressive, dark, fowl language, name calling, inappropriate sexual remarks, and physically aggressive. I was never struck by him but pushed and things snatched from my hand. He would tell me daily, he disliked me. He wanted a divorce. I was called a "quisling" or a trader because I had to relay all information to his parents. He began heavily self medicating. We became thousands and thousands of dollars deep in debt. His family began sending money, thousands in fact. He began pushing boundaries, social and physical. Impulse behavior. Not showering for month at a time. Wetting himself. Self medicating with weed and prescription drugs. We lost everything in our home. It got VERY toxic. I was constantly on phone with doctors, chasing him, defending myself with him (using some of these phrases) and forgot to take care of myself. In April, I left. I was incredibly patient for a long time but I realized I was the mourning the loss of my husband and best friend. I was afraid the physicality would escalate. During the separation, his behavior amplified more. I would get calls about his behavior. I was judged by friends for leaving him but no one, but his family and close friends, understood the darkness. In early June, he was in a car accident. He was told not to drive but he did what he wanted to do. It woke me up. i needed to reach and get through to him. 2 weeks later, I made him watch our wedding video. It changed everything. He didn't remember his vows. He always said that was the happiest day of his life. 10 years, we were happy. Through that, we talked and he agreed to therapy. Everyday is a challenge. I see his struggle now. I see him fighting for his Independence. I see him trying. We still have behavior issues and my marriage feels stilted due to being a caregiver. i miss the sensitive man I called my husband. But im hoping, through therapy we can reach a new normal. Until I read this and some comments, I felt no one could relate. It is a hard process and very draining. His family is currently taking a timeout, although helping financially. As hard as it is for me, I cant imagine how he must feel. He said the other day, he want to be the man he used to be. It broke my heart. To all families and friends of TBI survivors, I have nothing but empathy, compassion, and understanding. It is still early in our journey but through support, I know we are closer to discovering Our New Normal. Thanks for this article.

I completely understate I am in the same situation with my husband he has a brain tumor and has already had brain surgery and is now about to have a second brain surgery and things have been so hard but I know he can’t help it! Stay strong my friend God will honor us for everything we have done for our loved ones!!

I really love your article I'm going through the same. But you so strong and its hard

My name is Faith. I was visiting my mom who lost her home in hurricane Michael so she evacuated and came to Louisiana. My mom missed her daughter and grand child so I surprised her by bringing my son to Louisiana to see her. I wasn’t here 24 hours and I was struck by a semi truck while I was at a stop sign. I was in a coma for over a week, several broken bones, ear about ripped off, infected hematoma, brain bleeds, etc. I was airlifted from the scene. My mom ran to me and held my head up until the paramedics got there. The doctor told her that if she wouldn’t have held my head up like she did then I would have had a lot more damage and I might not be alive right now. This accident has changed so much for me. Before the wreck, I was living life so fast. I was never satisfied with what I had, I always wanted the next best thing. This wreck has taught me a lot and how precious life is. Yes, I have been through a traumatic experience but I will not let it define who I am. Every medical person I encounter can not believe I’m not worse off. My mom asked the doctor how bad I was, and he told my mom “she’s not the best I’ve seen but she’s not the worst.” My mom asked him “what does that mean? So you’re saying out of 10 my daughter is more of a 5.” She was so irritated but who wouldn’t be. He told my mom “no, more of an 8”. Long story short, never take life for granted, because you could be here one minute and gone the next. Thank y’all for reading my story. Oh and the wreck was January 26,2019

Thank you for your story. I loved reading that you will not let it define who you are, that's a substantial gift for you.
Keeping your mind active is beneficial. I was involved in a car accident during college, took one-quarter off and returned to graduate 2 years later. It was extremely difficult going through, but I'm better off years later as a result.

You can control your behaviour if you want to. Said to me 6 months after my TBI - wide spread defused Axonal damage, especially prefrontal lobe!

When my gran had a stroke, my mum kept on telling jokes to her. I knew this was a bad idea because gran didn't understand jokes anymore. I just used to give my mum a friendly grin and quickly change the subject to something gran would still understand. I think sometimes people forget how much brain function someone has lost. Patronizing sayings always irritated me, because again, there were typical ignorant sayings, by care staff, when they talked to my gran when she lived in a nursing home, such as "Oh you'll be alright!", "So how are you today?", "You're very lucky to still be with us!".
I would roll my eyes in disdain. My gran couldn't explain how she felt from day to day. Yet the care staff where she lived, seemed to not understand this. I think nursing home staff, need to face facts, the person has lost their ability to vocalize things. They understood that gran needed obvious things like medication, food, drinks, but anyone would figure that. Just like with my aspergers, I can't vocalize very personal intimacy problems in my relationship, so because I don't know how to, I have to express this PHYSICALLY, by either walking off, or by not eating much. It truly can't be helped. We know not everything of what we do. There's not enough awareness of brain damage out there. You hear a lot about dementia and alzheimer's, but all of the TV commercials about it say the same old crap as the next one. They always show some elderly person walking with a zimmer frame, yet young people can get these brain injuries too. I just think that public media like to put us all in one box, and are age-ist.

I am 29 years old, I got my brain injury when I was 1 in a half months old. I was born in January, and was shaken in March of 1990. my biological "father" is who shook me, he shook me in March, and did not get arrested till August.
He committed suicide while he was on "Suicide watch"

This is extremely bad. I hope that you had good help from a great therapist. If not, you still can get this help. My Daughter has a traumatic brain injury from a car accident when she was 18. Now she is 33 and in a neuro-rehab center. I hope you are alright where ever you are. I wish you the best.

it has been 8 yrs. I was hit by drunk driver on my lunch hr going back to work...I never made it back due to that day. I sometimes feel down but never suicidal. Some memories remain implanted in brain and 1 was holding my brothers hand when he shot himself and he died. It seems most of those memories that were such a negative in my life will stay yet I sometimes search for the positive ones. After injury I found other family members who I learn who I can and can't trust completely and that is sad. How do others overcome this sadness?

Same here, but best friends seem to disappear.

My head went thru a windshield. The police blamed my friend and I simply because we were 18yo boys. We did nothing wrong, but the police didn't even give me a ride home or put me in the ambulance

Often arguments are started over things people have said to me...things I don't remember. I feel frustrated and at times fearful. Is this ever going to get better? I'm going on 3 years.

I am going on six years and still not feeling well. In fact, Paranoia has now set in. horrible place to be. hang in there keep on putting one foot in front of the other and keep smiling. Every day when you wake up be grateful for something and same when you go to bed.

I still hear all of these every time I’m with the mother and sister.....35 years after the head trauma accident!!

I've heard many of these things from my (now ex) husband. The one I hated the most was "Stop feeling sorry for yourself."

I am just finally breaking through all the negative things people have told me...such as “suck it up” or “ it’s all in your head” really?!
I’ve felt so lazy, whiney, and just a bad person because I can’t be the person I know I really am!
I am in an ignorant relationship because of this TBI and am praying that somehow someday I will overcome! Bless all of you who are silently suffering and anyone who is wonderful enough to understand the difficulties of those of us who are living with TBI’s.

I find the most frustrating thing is when I am trying to explain my severe fatigue and memory problems and the person I am talking to says, "Oh yes, I know what that's like, I get that."

my husband has a traumatic Brain Injury. we are very in tune to severe fatigue and memory problems. But i am his wife and caregiver. I encourage him to challenge himself and i certainly let him rest when he needs it. I understand trying to explain to people who dont know anything about brain injury- he seems ok but- hes not alright. So i get it.

I completely agree. No one understands what each individual is going through upstairs. Sometimes people have to explain the same thing to me 3 or 4 times before it actually fully computes. I feel like an idiot when that happens. They sometimes say "why are you not listening to me!?" In frustration. I say that I am but they say that I am not. It very hard to describe that feeling. So how could someone understand what I am going through? I'm sorry about what you are going through.

No one really gets it unless they have had a brain injury. There is no way they can get it. So yes, it it frustrating for people to pretend to know the exact way you feel. They should say, I can only imagine how you must be feeling.

I hate that comment as well. I’m 53 and my brain tumor was removed 10 years ago. I know people start forgetting where they leave their glasses at my age. But they don’t understand what I’m saying.

Let them try living with neuro fatigue! I's chronic, debilitating & it just never ends! Only other TBI Survivors "get it".

I survived the accidents... I must now "Live with the Brain Injury and all the stuff that goes with it..."

It is not a "Stigma!" but discrimination in lack of: proper diagnosis; treatment; supports; understanding... and yes funding! Brain Injury still remains the Silent Epidemic.

We must continue to advocate for ourselves, others and those to come... those living with brain injury.

Surviving the accident is the easiest part in my humble opinion. I pray that someday, somehow I can provide support and education to others wether they be survivors, medical providers, or family and loved ones. This is truly a silent tragic condition and more public awareness needs to be brought to the attention of the public; nationally and internationally.

some days I think I would have rather not lived thru but yet now I was given a second chance, time for me to give back more than ever, give others the power of how to over come a t.b.i. im going on 7 years exact date 3/16

I was in a motor cycle accident when I was 16. I was bright charming and had dthe world by the seat of my pants and now after all these years I have finally figured it out. Its only taken 40 years for me to figure it out on my own, kind of slipped thought the cracks as far as treatment. I work 40 hours plus a week but the most simple things just sometimes just dont make sense. I have had a lot of jobs for this reason, but I keep going. My reflexes are not so good so have had some injures at work. I have a college educated family. Now I get the every day jobs. I take gabapentin 300mg and paroxetine 10mg. I went for 30 years on no meds Thanks for this web site I am grateful for this and what I have. I have been married and divorced no kids, now I just feel rejected from most. I just dont remember as much as I used to. Thanks for letting me write this, it feels good to say something to someone who understands. John DeMore

That is amazing!!! Bless you for having to deal with this all on your own!!! I’m curious as to were you around anyone when your accident happened?
I had a motor cycle accident 3 years ago in Florida, mine was in the middle of street and as far as TBI goes I’m not sure if it was called minor or what but I do know it was critical care. I had road rash and a broken collar bone too. I had brain surgery, was in a coma (6 days) and in ICU for 8 days so there were and are plenty of ppl around me. Ppl mean well but as soon as the bones are healed and scars are covered they forget. Out of sight out of mind!! Care givers are great as long as they have a career of it, because it is so stressful for them.
Ppl that are able to stay home and do for themselves, like me, everyone looks and treats you as though you’re normal. Which in fact I am except my brain doesn’t work right or like it used to. So when I say something odd that’s when I get the strange looks, side whispers to other ppl, subject changes and all kinds of things that makes it clear to me what they think.
I tried to go back to work, tried was ten months I shouldn’t have made myself try.
Good luck to you and thank God you have ppl now!! The Shepherd enter in Atl Ga is the BOMB for ppl like us!! Just started the therapy treatments!! Two neurologist after my accident told me there was no therapy for your brain!! Funny huh?! You would think brain drs were smart right, but naw just in certain areas of the brain I guess! One could have passed for a foot dr!!
Enjoy life, that’s what life is all about for me!!!

In 2010 I had my head sliced by a broken bottle and I never went to the hospital. Years later I have memory issues, difficulty concentrating, mood swings, depression, anxiety, sometimes i can't sleep, sharp pain where i have my scar and constantly having headaches. I was in denial that this was all related to my head injury and the more I read about TBI, the more I am conscious that I have to live with this. The only thing I can do is keep pushing for a better day and pray to God that it gets better.

I slipped and fell hitting the back of head knocked unconscious. I awoke in ER. No memory of the fall or being taken by ambulance. I was told I had a TBI with multiple brain bleeds. This was six months ago. My life has been altered. Constant headaches vertigo nausea ringing in ears short term memory loss. I lost sense of smell and taste. Now I have “phantom smells”. It’s an awful smell like nothing I’ve ever smelled. It’s with me 24/7. I breath and the smell won’t go away. It’s caused my nausea to worsen and it’s hard to even eat. I stopped cooking especially anything in oven because I forget I put it in oven and I can’t smell it when it starts burning. I lost my job. I lost my car. The worst is I’m losing my family. My daughter gets agitated because she “wants me to snap out of it”. My sisters just don’t want to talk to me anymore. I’m about to be evicted. The chances of my daughter taking me in is slim. All of this is one year ago I had open heart surgery. I went into heart failure. I had a bad mitral valve that caused my lungs to fill up with fluid. I had no symptoms prior other than occasional palpitations. I was a basically healthy working 53 year old.

Now I’ve lost everything, my family, and losing hope.

I would gladly go through open heart surgery again if I could rather than what I’m going through after my TBI.

Trust me. If I could “Just Snap out of it” I would.

Not sure you will read this Barbara but I hope things have improved for you. Two close members of my family have both had very traumatic brain injuries, years apart from each other but suffer very similar symptoms. I wish more than anything that they could "snap out of it" but if only it were that easy aye? The key is to be patient (very, at times) and to ALWAYS have in the back of your mind that it is not their fault. I sometimes forget - because they both 'look' normal - but the signs are a constant reminder that their ways will never be the same and when I think about it, my heart breaks. For them, not me. I don't feel like there is enough support for those who have suffered a TBI and also I feel like there should be support for the families living with people who have suffered a TBI - because the effects are different in everyone and not black and white and with a bit of understanding, I am sure this would help people such as yourself. You are in very early stages and I am sure over time your symptoms will lessen. I have noticed a huge difference in one of my family members and his accident was 9 years ago. I really hope that your family can try to understand what you are going through and be able to support you. Don't ever lose hope :)

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