9 Things NOT to Say to Someone with a Brain Injury

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

Funny, I have been dain bramaged (sic) since 1974 and no one that I can remember has ever said any of those things to me. That might be because most people I have ever known, except those most intimate to me, have no idea I am that way. Have been quite successful almost my entire life, have not bought into the "worldly" idea of having to have so much stuff, although, I do have a lot of stuff, but, it is almost all stuff that I can use to make my and anyone else's life better, who needs to have things made, fixed, improved, altered or just changed to satisfy some perceived need. Almost all of my stuff is tools and material to use to make life improvements.
Unless I told you, or you already knew, you would not have any idea that I have a TBI.

I had a TBI 20 years ago. AVM, brain hemorrhage, neuro surgery and gamma knife.

I was still school age then. After treatment I struggled with socialising and have had a relatively isolated life since. You could say I missed a lot of normal life moments. My support was deliberately removed more than 15 years ago and I live and work independently now.

Some of those problems linked to a limited exposure to social activities continues to dominate in my life today.

I worry I'll never date, I might never find love. Might never have children. And I will need to go through the next 40 years in similar isolation to the last 20. I'm not sure I could face that.

My illness or disability is visible to everyone but I've worked hard make it as invisible as possible. When it's noticed I'm often shunned and treated like an addict. My resting tremor is often taken for something else. Or I'm treated like I'm incompetent. I'm also overlooked at work.

Most normal people's opportunity to find a mate depends on how they look and interact. I'm at a disadvantage on both counts.

The public perception of head injury should be changed. I don't want to live and die alone.

I have a TBI and I was about to give up on finding love when I met someone (my now husband) on the internet and it seemed to take years to happen. I'm just saying don't give up on finding love, there's someone out there that will love you for you. GOOD LUCK!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

don't approach someone with a TBI with negativity about others people don't or are may be unable to proses comunactioning can be a major issue, face to face communication in a comfortable setting i.e. stress-free

Number 10 is:
Oh, I forget things all the time too.

I am a care giver for my friend of 20 yrs . Some times I feel like I made a mistake, but then I see such a good improvement from when he was in facility. It seems every time a doctor says they want to test him for different things he gets mad. I am only trying to help, is there anything I can do to help him take his medicine ? Stop being mad at me ? I do everything I can for him is it to much ? Please is there anyone with some advice I am willing to try anything if I dont care for him there is know one else. I feel I gave him my word I would be here to the end, like to keep it not give up on him. I am getting to the point I want to throw the towel in, but I want to try my best before i give up. If you have any advice for me please good or bad I take anything at this point. Thank you for reading this and your time.

Hi, I dont feel like I have a lot of good answers for you. But I want to encourage you I have lived this every day for 3 years day and day out since my husband was badly injured. It is hard. You feel unseen and unheard and attacked and definitely underappreciated.
One counselor encouraged me to quietly say, "You are hurting my feelings." And then walk away. Leave them to think for awhile alone about their behavior. People with TBI are often unaware how they come across because they can no longer process empathy. Leaving them with that thought can help them learn appropriate treatment of others and at least spare you going through useless verbal abuse.
Also support group for caregivers is so encouraging. They often have providers that give helpful insight and talk about treatments. I would highly recommend looking for one near you or online even. Keep up the good work. You are invaluable.

Find an OT or therapist who specializes in TBI and work with them together with your friend. You need someone like that who understands what he needs help with and doesn’t need help with to communicate that to you and also to help him understand what boundaries you need to ser

Renee, Don't give up on your friend. Don't take the anger at you as personal, I know it's hard. I had brain surgery a year ago, I get angry at the people I love the most, I push them away and then get upset that they leave. All I want is someone to be gentle and positive regardless of how I react, because I can't control it. I want to, I see how my uncontrolled actions make my loved ones feel, and that makes it spiral even more. Physical touch, gentle validating words...can defuse the anger sometimes. sometimes it just needs to come out. If you can redirect the anger to something good or just pushing against something, it will dissipate. Like simply just pushing against a wall is so grounding and I can feel my edges and contain my emotions when I can do that. Help guide your friend to those things he can do when he feels the rage of emotions like that. He won't remember, he will need help at first to just know what to do when the emotions hit. 2 other things I want to share that may help. There are apps for meditation. My favorite is "Insight Timer", "Calm" is another one. "Smiling Mind" is another completely free one. I know, you may think, no way, this isn't going to help.... someone talking in a gentle voice about inner conflict and inner peace and dark and light places or taking to visualize a peaceful place isn't going to help.... but it really does!! Preview some of the meditations. You know your friend over 20 years, you know him... pick one that may speak to what he is in need of.... preview it, then play it for him... with him... stay close and listen and meditate with him... make it be your thing, you will find it helpful too. I'm so serious about this, I was so skeptical, but it opens a person up to eventually... and calms the inner self that is at war within. Also, the biggest thing that has helped me is a DBT group therapy, or one-on-one DBT therapist. Look up Dialectic Behavioral Therapy.... It is really helping me get my life back. I am in a year-long program now. There is hope!! Don't lose hope, help your friend re-train his brain and I pray for you, thank you for being there for him.... he probably lost his gratitude with the injury...give him some grace and time to find it again, and he'll express his thankfulness for you, until then, I thank you. Thanks for being an amazing friend!!

I had a TBI in 2017. I am fortunate to have a great support network. However, it was very difficult for everyone until my aphasia improved. Being able to communicate made a huge difference

I needed this today! There are days I feel surrounded by voices that just don't know when to shut up! These and other sentiments are only a part of the reason my brain damage went undiagnosed for so long.

ADEM survivor here waiting to die again. Everyone blamed my "emotional issues" on my medication. I can tell you right now 99% of my emotional outbursts were just. I am dehumunised, emasculated, patronize and gaslight daily. The, uninjured forget, we can have valid issues. The injured can have wants, hopes and dreams. It is the uninjured that forget there was a past and that still carries with us. Sadly I would rather have death. Life is not worth the hell I was born into and now have to relive.

I've been to this site so many times, can't recall.

It disgusts me the way I've (and others like me) are treated.

It should be an embarrassment for others to act as they do, yet it still occurs daily.

Getting help is a joke. Getting everything and anything you earned prior. Is stolen, house, money, life, hopes, and what the government says they provide is not true. I'm stuck.

Most days I want to die. Actually, every day I want to die.

Regrets, many. Being nice and kind. Volunteering, so very much...

I'm so sorry for your pain.

I fond find myself apologizing just because. Just because, people treat me like sh*t. As if I've done something really bad.

I really hope you feel better. You are not alone.

The people we rely on to help us can make a huge difference in how well recovery goes and whether or not we maintain the will to live. It can be very hard if the people around you don’t get it. And are unwilling to try to learn.

I have a brain injury on the right side. It's tough, but keep going. I'll make it with you.

Hey there. I’m just curious my child’s father just had a brain injury to his right side. And he woke up from the coma but he’s not talking do you by chance know ‘ what the outcome would be ?

Hey in 2006 I had a motorcycle accident and got a brain injury from most of my left temporal lobe and a little on my right. Was in a coma for 9 days. Had to be in physical therapy for 2 months, occupational for 4months, and speech for 1 year. All I can say is my parents and friends keep me going for showing their love and support. I am almost the same person I was, but still sometimes there'll be a word I'm trying to say and mostly am able to get it said. Hopefully he'll be able to get through it well!

Regarding talking again after a right brain injury, sometimes there is a need for speech therapy to be able to communicate again.

I have has 2x brain surgeries to try to remove a tumor but I don't shout it from the roof tops. I find this really frustrating esp when I forget something and people respond with "try having my memory"! I'm sure I'll learn to ignore it in time, but i get spoken to like I'm thick, which I never have been.

I've had two as well going on 3.
For me I had to get smarter just to function and one important lesson I learned. Most people don't need to learn how to live with a TBI. Do you know sign language? How's your brail?
So I believe it's give and take.

Hi ~ I sustained a traumatic brain injury due being rear ended at a red light on 3/09/2019 by an 18yo because he was texting. The force was unbelievable - they think the car was going 50mph. My car was totalled. I am very thankful to be alive! I did not hit my head but I was jarred so hard that it felt like my brain shifted. I quickly had neck pain,back pain, and headaches. After lots of testing (MRI, CT, EMG) I have 2 herniated discs in my neck, 3 budged discs in my lumbar, nerve damage in my left arm. I have bruising and damage to my frontal lobes. The vision in my left eye is blurry, I have memory loss, lack of concentration, I am clumsy and extremely fatigued. I lost my job as a spine surgery coordinator because I was starting to make mistakes. I am 53 and this is not how I wanted to retire! I am in so much pain! I had 1 epidural and I experienced a severe reaction (red man syndrome). I'm being changed from cymbalta to lexapro due to weight gain and it makes me perspire profusely. I sleep till 12noon and I have no energy to shower or walk my dogs. I used to decorate for every holiday and enjoyed it so much. I barely have the energy to think about it. I am going to physical therapy for vestibular disorders (vestibular ocular hypofunction) if I remember. I hope by this time next year I regain some of me back. If anyone has suggestions I would love to hear them❤
Thank you,

Hi Evie,
Are you still looking at this site? If so, I would like to reply to your post. Heidi (I may come up as my alta-ego, "Ida" :-)

were accomodations or fmla options from your employer?

Hello Evie I can't say I know all that you're feeling, but I can sympathize with some. I have problems with my lower back and my knees that cause me to be in pain day and night. But the only thing I can say to you just keep praying and trusting in God. When I'm by myself I pray and talk to Him and I can't feel no pain , nothing but peace. Try it , it will help you also.

Two plants i am researching for tbi are vinca and huperzine . Sounds amazing from what ive learned so far .

I have had brain surgery twice. I too suffer from what most call memory loss, fatigue, what ever..
I call it my gift.
It made me look at everything in a positive way.
Try it, at first it's not so easy, in time it becomes habit, in fact I'm replying during covid 19 because I want to make my time count.

After consulting a doctor honestly try cannabis

Very True sometimes have gotten so Frustrated about All that's happened a Drunk went thru a Red light an caused me to be put into Hospitals for 18 months The Best thing I have found is Marijuana helps Me Deal with All the problems as well as Helps control me having .. Aura's - what You have usually before a seizure

Thank you, Evie, for sharing your story. I don't have any suggestions at this time, though I've had 9 concussions. I have gained support from Facebook groups and from interactions with others in those groups. Recovery is gradual, so celebrating small victories has been great for me. Actually, meditation has helped me a lot too; in reduces my anxiety by the end of the session, which helps me sleep. I will be thinking about you...

I do not know how to start, I had many accidents that fit under fate. one of them gave me a traumatic brain injury but the good part the unconciousness was 9 hours. I was 11 years old when i made this accident that made me make two operations. one to remove the blood plot before reaching the brain and the other one to put a medical bone in my head, that was in 1987 while i was walking in the pavement in saudi arabia I found a car in my face then i woke up in hospital. in 1992 I got part of a bullet hitting my skull so my health started to be very bad with a need to many medications. now in 2020 I keep feeling that life is not worthy when you look normal and you have to achieve everything like normal people and no body will care about what you are suffering from.

You have every right to be happy. I have suffered 2 brain surgeries and at first how I was treated bothered me. So I got a mohawk dyed my hair purple and made everyone interested comment on my scar or hair witch led to the scar.
Now everyone interested knows and can form their own opinion

Well now at least for me I know why certain things set me off now. I never understood why they did but it makes more sense now. For kindergarten to well now I have lived with brain damage due to a car accident. I have always had bad thoughts and known I shouldn't because I use to talk lots of my friends and some strangers out of suicide and well all of them have said what I have said helped. As for me i have tried telling myself the same things but I never believe them at least when I tell them to myself where I do when I tell them to others. Learning basic easy things is really hard I remember having to be told things multiple times. I'm slightly embarrassed to tell people about the damage. And well everyone in school knew and some pitted me other bugged me about it. To be honest I dont know what bothered me more. I do remember I started to surpass my some of my peers in math and some other subjects. Teachers were saying I was doing it with ease but I dont know if I was or not. I remember docters telling me I'd never walk but the nurses and parents never stopped pushing me to keep trying I use to run when I wanted to walk. I've never given up. But I almost always feel guilty I don't know why. I stand up for others I feel great but if I stand up for myself I repulse it. But hopefully with this I'll understand myself better.

From where I stand your lucky.
I'm now 53 when I was 49 I was in the FL keys and got mugged by 2 to 6 people depending on which police report you read.
What I have learned to do.

Remember, understanding a disability is easy if you have it.
You can only educate them and be educated possibly?

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

You don't have to defend yourself. I know the feeling very very well. Your scar is on the outside but his scar much bigger on his inside. You are so much more than a scar. Remember that people like that are weak inside and luagh it off when he tries to bully you. You are stronger inside than he will ever be. But with great strength comes great responsibility so don't be mean back and play his game. You are better than that. The joy in that secret is huge

How profoundly RIGHT ON!!! I assume you have a PHD.

Going through the same stuff. It helps knowing that we are stronger inside than them. They act like that because they are the weak ones. Not us. We fight bigger battles inside every day than they will ever know. Keep the strength we have inside and we will always be stronger than them. And remember great power comes with great responsibility. We don't need anyone to feel as bad as we know people can feel. Stay strong buddy.

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.

Please Dont off yourself, that's not going to fix the problem. I have a mom who treated me the same way and after sitting her down looking her in the eye I told her I felt everything she ever told me and it hurts. Maybe you should try to do the same. Let her know that having a TBI is difficult already and her treating you the way she does is not helping. I will pray it works out for the better and good luck.

Please don't lose Hope, almost 30 years ago I felt that very same way. I am so glad I was too much of a chicken to end it all because I wouldn't have felt the joys of being Grandma, Best thing ever. when faced with a life changing misfortune that I am working on writing up a post with my story. MY ADVICE.... "Believe you can and you`re halfway there. " One of my favorite quotes by Theodore Roosevelt. Hang in there my friend, Embrace it The quicker you accept it the better. It`s not the end of the world.

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.

I had a brain injury and lost my ability to feel a kiss or a hug, my husband felt like a log beside me in the P, People were crowds. Knew who I loved but no feeling scary. I got all this back 3 weeks ago, Thank the good lord. I didn't know these feelings were gone til they came back. Very confusing but makes a lot of sense how I acted for the past two years. Prayers for you.

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.

Hi, thank you for sharing and offering to help a fellow TBI person. I have a great sense of humor; I will process my TBI and find a way to radically accept this. I so need to connect with someone who just knows!!! Someone who wont judge me, correct me, bark at me or blame me for “not caring enough” that if it was important to me, I’d remember! My TBI seems to be very noticeable with others around me. Yet no one wants to learn about all of my conditions. Frequently blamed for basically everything. I’m already terminally ill, although that’s not ok, I have processed it and accepted them. Nothing will prevent me from growing/evolving. I’d be interested in learning about you and how your TBI has impacted your life.

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.