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.

Brenda replied on

Believe me when I say you need to see a neurologist. They will recommend speech therapy to help you regain your memory. They might say it’s been too long but isn’t it worth a try? I went through this with my husband. I would also recommend you see a therapist and talk it out. You might need medication to help you cope. Remember none of this is your fault. Good luck

Anonymous replied on

❤❤❤

Brandi replied on

Please if you need someone to talk to leave your email address in a comment and I'll message you asap. I'm a psychologist and I also have a tbi and my situation sounds very familiar.

Elisa replied on

I am currently in a rehab for tbi and is having trouble coping with it. I am a nurse and never met or treated anyone with a tbi. I would love to hear your input and how you are dealing with tbi. My email is carter_lisha@yahoo.com looking forward to hearing from you

Kelli Cullum replied on

Thank you

Kelli Cullum replied on

Yes, I need a better place to live or a facility for me. I have a traumatic brain injury and ptsd. I live at a independent living facility for 50 and older. The level of drama and gossip is out of control. It makes my memory worse, and my depression worse as well. My mother out me here after the OR A caught her collecting my cash rent money and declaring me as a dependent.

Jenny Massa replied on

I'm a very tuff cookie, to put it bluntly!!! Well just to put it out on front street I was beat with a fire extinguisher that's what caused my frontal damage to my head and my brain damage I just wanted to make you aware that I found your article informative and insightul, thank you so very much Jenny Massa

Tanja replied on

I personally find that remaining completely silent when I'm really angry or emotionally weepy really helps. Absorbing what is being said to me while understanding why I feel the way I do. Thinking about it once I am alone and weighing my choices of actions. Writing down all the feelings I have and why. Then in point form I'll list what the problems are and how I want to express myself.

Anonymous replied on

I feel like I'm living a social experiment because before my brain surgery and all the elements it led to me having to have my teeth pulled and complications neuromas people look at me as if I'm a street person or a drug addicted coming from 205 to 1:45 the public to understand that it's not that it's the effects of brain surgery or TBI

Steve replied on

I was hit by a car and have a TBI. I have trouble remembering things, keeping track of the flow time (i.o.w. I can't tell how long ago or how recently something happened when more than a couple days have passed.), and organizing my thoughts in the moment. That last one has been the most difficult to cope with. When I'm trying to engage someone in conversation and they ask me a question, I get stuck and can't formulate a reply. And when I try, my statements are fractured and make little sense. When I take my time answering, people think I've become disinterested. This has led me to become anti-social.
The things people say, don't bother me. It's what they do. The one thing you should do with someone who has a TBI is be patient. I can joke about my TBI, and I don't mind if other people joke about it with me. I don't mind if people point out the obvious problems I have because of it. I'm only bothered when they give up on me.

Chris replied on

Glasgow coma scale 8 here, is your limp that bad or have you had a beer maybe two!

Patricia Jones replied on

Don't Give up on people with TBI.

Anonymous replied on

I was TBI and it is so frustrating having to keep asking what something means.
They just look at me like I am stupid or something.
I just don't understand why people are like that.

Patricia Jones replied on

Stay positive and believe in yourself.

roberta carbone replied on

my husband has a t.b.i tramatic brain injury,his mother keeps talking to him like a baby.i know thats not normal.she doesnt stop.i dont know what to do..she talks to him like a baby,laughs like a baby,treats him like a baby,blows him kisses through the phone.i dont know how to get her to stop.can someone please help me with this?

Kelly replied on

I understand what you are saying. I have permanent brain damage. I do know that my spouse would have a hard time watching my mother talk to me like a baby as he would probably know that it would be demoralizing to the strong emotional woman he knows me to be. For her son I wonder if this would be demasculinating? I found it hard when people yelled as if I was deaf or talked to me like I was a toddler. My soul was still me but parts of me weren’t and looked different. Educating with literature and giving the people who love you suggestions for a different approach is helpful as after all you share a common goal and that is be participants in your spouses care

Mar replied on

no matter what sweetheart, he will forever be her baby, thats just a mothers love. youd do the same if it were your child. im just saying, be patient and considerate, you also got to understand that she is going through it too. try to find ways for both of your to get along and work with your husband and in all honesty.. why are you upset? your husband is dealing with the injury and in my opinion, as his wife you should be there for him not fighting with his mom about what she does or doesnt do atleast shes showing him affection while your just complaining about the love your husband is getting. i dont knwo my friend but seems kinda selfish

Mona replied on

My 29 year old son suffered a TBI, and I kinda get what you're feeling. My son's aunt was talking to my son like a baby, and it bothered me too. My son's dad is the one who told her to "don't talk to my son like he's a baby, he's not a baby" I'm kinda glad he said what I wanted to say without being rude. He and his sister don't get along so I'm sure it was easy for him. But, I was planning to tell her let's not talk to him like he's a baby especially around his kids because I don't know what his state of mind is, but he knows he's a dad, therefore, I want him to believe in his mind that his kids still look up to him, not seeing someone baby him. That was my plan, but, thanks to his dad, I didn't have to say anything. I talk to my son normally, and tell him constantly he needs to fight to get better for these kids so he can take care of them. In fact, if his kids are fighting, I tell my son, to tell his kids to stop and behave, and my son, who was never supposed to talk again, says, in a deep voice, YOU BOYS STOP!! I must say, he is doing a good job. His TBI was a worst case scenario, but he is here, and I very proud of him. 13 months post! Hope this helps you.

Anonymous replied on

Hi, my husband and I were in a severe motorcycle accident in 2011. Neither of us were wearing helmets.
I had internal bleeding 11 broken bones. My husband had brain trauma, a left lobe hemorrhage and subdural hematoma with a 2mm midline shift.
The years immediately following he seemed to be doing better, he returned to work until he retired in 2014.
The past few years, he has become self centered, zero empathy for others, argumentative, hot headed when he drives, aggressive even pushing a shopping cart. Most days he looks at me with the same angry expression I remember seeing in the hospital after our accident. I literally feel like he hates me and quite a few times I have considered divorce.
A very close friend and relatives have noticed his personality change. He gets angry about something and will not let it go. He is ALWAYS right, no matter what.
A once happy, goofy guy who barely laughs anymore. Has anyone else experienced this late onset? How do I live like this? If he can't help it I would understand it more but how do I know if it's due to the TBI? What kind of medication is known to help this?
When I mention seeing a counselor it turns into a fight, and he starts twisting things. He has agreed to see a Neurologist, due to low testosterone and early diabetes ( not because of personality changes).His last brain MRI was approximately 6 yrs ago and it was normal, so I don't know what to think.
Any input is GREATLY appreciated.
Thank you

Emily replied on

I sympathize with you so much. This sounds just like my 15yr old son who had a tbi 2.5yrs ago. He got his by crashing a dirt bike and not wearing a helmet. He used to be a happy go lucky kid and now he is constantly
doing EVERYTHING AND I MEAN EVERYTHING!!!! you listed above. He's very hard to be around. It makes me sooo sad to say this but I can't wait til he's 18 and on his own. I just worry about his future.

Brenda replied on

When he sees the neurologist for the other concerns mention the anger and aggression (that’s if he allows you in the room) good luck

Kathy replied on

Hello your comment touched something in me when you stated his MRI was normal. I’ve had 3 TBI’s and none of them are in my medical records. The first was root canal gone bad as dentist drilled into my jaw bone cleaned with acid destroying nerves in jawbone and headed straight to base of skull giving me a stroke and TBI so severe I couldn’t recognize my only son whom I cherish and adore. It took me 5-6 years to understand content of a half hour tv show. I was treated but in a spread out way with many MRI’s that blamed scarring on my brain (severe for my age) on my lifestyle such as smoking diet medicine etc. during MRI a small pituitary adenoma was found and declared benign (without usual testing or biopsy or removal which is always done) rage was a long horrid phase of my TBI which is still easily triggered because that filter nonTBI me once had is scarred over broken off stuck control knob. I’ve never been heard, seen, diagnosed or anything other than negative feedback for 10 years. How I’m alive living a life of constant beat down emotionally and loss of everyone including my only son, daughter in law and granddaughters is beyond me. I have no lifeline left.
That said, your husband I’m sure feels your anger at him his mom and your loss of old him. If you care be sure to check his pain, fear loss isn’t a sign of hopelessness. Anger at everyone and everything well what’s his lifeline to hope love family understanding and reminder how strong any human has to be to actually survive this and then thrive. Statistics not great for us TBI humans. It runs our everything (the brain) a head injury affects entire body, every system within
I feel your pain you miss attention and connection with old him maybe?
Maybe he doesn’t feel heard either?

Anonymous replied on

Forgive him its not his fault my injury was when i was younger than 10 years in my frontal lobe(emotions, cognitive abilities...). I hit the front of my head really hard and a huge bump appeared back then my parents told me that the doctor said im fine. Back then I was a kid so I didnt know better, but now im 21 and after so much(hard to concentrate and learn, depression, anxiety, sudden mood changes, no motivation,losing empathy for others, hard to control emotions...) I finally knew that it was an unidentified mild traumatic injury. The problem with mtbi is most people usually dont get the right help and are sometimes even told theres nothing wrong like my case. The worst about not knowing u have mtbi is wanting to change but physically cant because of your injury so you reach this wall because u dont know u have mtbi and just think how many people ended their lives because of this. So mtbi is a mild trumatic brain injury and judging from your accident your husbands seems to be more severe so his case is even worse than mine becuase his last mri was clean and hes also being told theres nothing wrong. I know it will be hard because he may be really hard on u but believe me I know im a good hearted person but u just cant control all these bad emotions. I hope things get better stay strong honestly your probably one of the only people who can really help him.

Chris replied on

I’ve been living with a TBI since I was 16. I’m now 47. This article is on point. There’s not a day that goes by that I don’t think about being “normal”.

Anonymous replied on

people, family mostly, have said it was the medication. which is bad but the worst thing is when they say it's all in your head. it kinda makes me laugh because i think to myself that it is technically correct. but it just highlights the extreme gulf that lies between them actually understanding and being able to help or at least not aggravate the symptoms, and where their apprehension of whats going on actually is.
both statements make me feel like i am stuck dealing with this all on my own. but the second takes away even hope of finding help. the first is more like blaming the victim, usually from bosses, priveledged folks, trump supporters and the like.... people who think they are better than you even before you were injured.

J replied on

My brother suffered a severe TBI after being assaulted. He is middle aged and my aging parents support him. He has been in a downward spiral for the last 6 months. The smallest things set him off and he goes ballistic. He says the most awful things to them and then turns to drugs and alcohol which makes the behavior even worse. They cannot talk to him about anything important because it's just a cycle that keeps repeating itself. He won't take any medication. When he's been to the doctor he's not honest about his behavior. I don't know how to help my parents. My brother's behavior is putting a big financial burden on them amongst the emotional burden they carry. They really need to find help but I'm beginning to loose hope that there's any help out there for him and my parents. It is really hard to not be angry at him even though I know his injury is affecting his thinking. His behavior was similar before the TBI but now it's so much worse. Any advice or help is appreciated.

Anonymous replied on

I would say get him checked into a place more qualified to watch over him and the behaviors he is doing, like a mental health facility. It might seem bad but realistically that's the best place for him to recover and learn different coping mechanisms. I would also suggest therapy.

Felicia replied on

My son , has a TBI , he doesn’t want to talk anyone that has experienced what his dealing with, he does take his medication, however it gets in a mode and said she doesn’t feel right, he’s messed up in the head and it’s leave me alone and he will leave and go walking, I’m always worry , I don’t know what to do if he won’t talk to anyone

Y replied on

He might be overwhelmed with your questions or comments causing him to be frustrated. Tell him that you love him unconditionally and to enjoy his walk. That you understand and will give him his space. Sometimes people with tbi are loners because they are struggling with navigating the new brain they have. He will come back, he just needs to figure it out on his own. Have infinite patience and unconditional love for him.

Anonymous replied on

You are a beautiful person

DTGB replied on

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.

Anonymous replied on

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.

Mtn replied on

Your comment “I do not want to live and die alone” made my heart drop…please don’t ever give up on love, or being loved. I am new to TBI’s as a partner, caregiver, friend, advocate, lover.
I have my worries, but I don’t let them overwhelm me, after a tough day…that’s why I’m here.
One thing I love most about him, is how positive he is. His day could have been HORRIBLE, but when you ask it was “best day ever” what he’s endured, and how he smiles now…I truly respect him and how far he’s come.
Perhaps finding a group with similar interests, (perhaps outdoors/calming) we love to fish together (amongst other things)
That’s how we met…I was in a major car accident to, and have my disabilities from it.
I believe we are here on this earth for a reason…everyday is a blessing.
I’m blessed everyday with my sweet patient man…I appreciate and value my time with him so much.
There needs to be more support, education…I’m curious, does perception change after that?
I am sending nothing but loving positive energy your way my friend. Thank you for sharing…all of you…

Staci Trillo replied on

Hey-
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!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Anonymous replied on

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

Anonymous replied on

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

Renee Finazzo replied on

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.

Amy replied on

I am in the same exact boat w x husband. My only thought is that this tbi is a lot like stigma alcoholics receive. I am t r y I n g to remember he is a sick person,. Not a bad person. My friend says picture him w a big bandage over his forehead to remind you of that. My daughter n I at wits end. When he drinks. It's much worse. U can fill out pprwrk cops can give you, take to courthouse. If judge approves. Sheriff. W I l l come pk him up. Take for mandatory 16 day mental evaluation. I am on verge of doing this. Iam grateful to read all this. It's like an AA MTG. Supportive. U may try AA. With the steps. I'm in fifteen yrs. Save my life. Or al anon. Work the spiritual principles. Good luck every one and mayGod BLESS us all!!!

Ruth replied on

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.

Stephanie replied on

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

M replied on

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!!

Mairi replied on

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

Anonymous replied on

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.

Anonymous replied on

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.

Anonymous As We... replied on

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.

E replied on

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

Stephanie replied on

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.

Anonymous replied on

I turned to Jesus instead. People are only human. With or without injury, we all need grace. Life is hard. Prayer and Bible reading almost always get me out of hopelessness or anger.

chris replied on

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

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