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 (438)

I totally relate to that comment. It's been two and a half years since an 80 year old man fell asleep driving crossed two yellow lines in a curve and hit me head on. My brain is just one issue. Since the accident I have dropped FOUR friends who don't and won't get it. "You need to focus on your kids and getting back to work". " you're fine". Hurtful and right now I don't need that negativity in my life. Living life is hard enough for me after spinal surgery with spinal plate fusion broken ribs lots of other surgeries and never knowing if I'll ever be me again.

My issues after TBI are primarily inability to function.  I cannot pay bill, the process of it, online or the old school way.  I cannot keep the house clean because I get overwhelmed, distracted, and fatigued.  I cannot negotiate the demands of relationships, the pressures from others to be Mary Sunshine, "get over it", and to "be normal"; and their anger,coldness and punishing behavior increases the level of my symptoms more than words can say.  I am seriously considering leaving my marriage of 31 years.  It has been 10 years, and my husband's anger towards me when I fail to live up to his expectations has evolved into my being on the receiving end of verbal abuse, emotional abandonment, and an overall condescending and cold manner towards me.  I am on medication to control the personality changes that caused me to feel anger and act out in ways that were God awful.  I have worked my butt off to become a person who does not act out in that way. If anything I am more controlled now than before TBI.   Now HE yells and screams and acts "bat shit crazy". Does anyone else have family that is angry 10 years after the fact.  I feel so helpless and sad that I am in this spot after decades of marriage.  Ugh!  I have to make a choice, stay in an environment that has made my functionality get far worse than it was a few years ago, or get out.  Has anyone else had to create a new life after TBI?  Being 56 years old does not help.  BTW, I cannot work, due to cognitive impairments.

I really get tired of my family ignoring it and tell me everything is fine. It has been over 4 years and I am not the old me before brain injury. My head still hurts on the area of impact. I still carry many of the symptoms and my family thinks I am going back to work to make them money or I can take on the world like I use to. It just is not in me any more.
 

I played football for 9 years, from 4th grade all the way through high school. I'm almost 50 now, and I find myself mad all the time. I do remember in high school hitting helmet to helmet and losing all peripheral vision. Xanax has helped for the last 15yrs. But getting worse. I love football, but if it steals your brain, it's not worth playing.

May I add another comment NOT to say to someone with a Brain Injury? Before my accident I had excellent language skills, speech, writing, it was my forte'. Now I have to rewrite this post numerous times just to make it coherent (I think :) maybe).  If I comment on my problem with language skills or memory mostly...my sister comes back with "oh yeah,  I am just like you."  Or "Oh yeah, I know ALL about that.  I bumped my head a couple of times too you know."  I don't mean to sound snarky but I know she never had a brain bleed nor even complained of a head bump.  I know she is trivializing my injury for whatever reason, it just makes everything harder when it has been years (9) and I still have moments when I realize I have lost another part of me.  I don't want sympathy.  There are very few who even know of my TBI, but for my personal relationships it would be nice to just acknowledge I have a problem with this or that and not be made to feel like I am  just seeking attention.  Sorry.  I did not intend this to be a personal rant.  Maybe just some advice on how to respond to her, what I have tried so far hasn't worked.  

I hear half of these from my family my anger makes me need to stay away from them. I am tired of trying to educate them. I am not the same person. I am different and a new person is evolving and taking care of myself needs to be first.

Wish more people would read this column

You can still have a good life!   and my reply now is (to myself) Up Yours!

I hate it when loved ones tell me that one day I will wake up and be all right.

I really don't know what to say. I haven't had a proper diagnosis in 5 years. My neurologist wants to put everything that has been wrong. With me as a result of an autoimmune disease. I have been telling him for years this is all a result of a horrible fall, I didn't realize it at first as my symptoms were not immediate. I know what you all live with. This is the first time I've ever written in any forum. I suffer from a vestibular disorder, lived basically in seclusion as going out on my own was impossible. There hasn't been much information given to me by my doctors as far as what I should or should not be doing. Now I have the scat bus which helps me to get around. Family has not been very understanding, often saying ridiculous those. I just laugh at naive people. I feel people with disabilities are better human beings. We are more compassionate and understanding. Be true to YOURSELVES, do whatever you have to to be as independent as you can be. Its important to try and educate others because the one thing you have that they won't have is knowledge of the unknown. I often tell people I don't like to repeat myself. A person is either for you or against you. I don't have time for the ones who don't get me or don't care to help me. I do as much as possible on my own, when I ask for help it is needed. A lot of things can be relearned. Do not allow the closed minded to close your mind. We may have problems however God has chosen is for a higher way of thinking. Be the first to help someone in anyway you can, you will feel better. A simple smile and act of kindness goes a long way. God Bless

I can relate too. I had concussion and post-concussive syndrome after fall from aerial arts apparatus. I was horribly misunderstood by my company. My director said I should choose safer activities. My manager was very punitive. It was obvious that they did not think the symptoms were real.

I just got hit with a tire iron a month ago I am telling the hospital I lose focus on what I am doing I can be doing something mind goes blank to me not normal what can I do to help my memory do I get answers all I get is it takes time this is normal... and it's just pissing me off

I'm 38 year old woman who was cracked in my frontal lobe with a wood cane intentionally. Ever since this injury, my life changed for the worse! My marriage going down hill, voice's everyday, spirit's and not good one's either. It was my mom boyfriend who cracked me in the head. My husband disrespects me everyday and the be nice to me but calls me names even blind and lazy! Don't know what else to do. Anonymous

I'm 15 yrs old and I can relate to all of these sayings. I've had 5 concussions from sports in the past 3 yrs. I have Post Concussive Syndrome and I can't do much physical activity without getting a major head ache. I have a terrible memory and I get yelled at for forgetting things constantly. I get frustrated easily and I'm usually always in a grumpy mood. I hate it when people treat brain injury like its a regularly injury. People act like it just goes away within a few weeks when it can last a lifetime .

My TBI was 6 years ago. Since then I have been fired from 3 jobs and 2 volunteering. Prior to my injury I always worked. I finally came to terms maybe I shouldn't try to work anymore. And my mom called me a quitter. By the way I do receive SSD. This was most hurtful thing anyone has every said. I know people look at me funny with my ataxic gait and my speech aphasia.

My boyfriend of 3 months got into a car accident 15 yrs ago and suffered a frontal lobe injury. I have been having trouble understanding the side effects of it, as he downplayed it at first. But I have recently been seeing more and more signs of his injury. I want to try and make it work, so I have been reading up on those types of injuries and how to deal with someone who has them, to help me better understand, and to help control my annoyance and sometimes anger with him. This article has helped. Thank you :)

Ms. Roland , reading this is the most up lifting thing I've ever read since my own TBI on 5/14/2013 My family was told to proceed with my funeral arrangements, I wasn't expected to survive. Madame, you are my new hero, God bless you. Your faithful admirer Shelby

To the one that had a fall at the age of four!!!!!! I am just reading on TBI and it all makes sense now and your story made me feel like I finally have someone to relate to. Youre never alone and I am now writing this in tears thinking that all the damage of a whole life time could have been at least half avoided given proper care and a clear diagoisis at that young age. I was 2.5 and went off the ladder on to the cement  and suffered a closed head 3/4 way around fracture and to add to the trauma they accused my parents of abuse. I was also restrained by the nurses and had to be  tied me down in the hospital crib with rope. You can see it in the background of my photos. Then at 5 I fell out of a tree and hit some tar curbing that the city had left there when they did repairs on the road. That was an open head wound and I never went back for any tests or nothing growing up. The strange thing is my temper that is comaparable to the devils blue streak is and was said to be inheritied by my grandfathers. I was always told to try harder and still cant understand the concept of trying harder. Its like the term apply yourself more a friends mother used to say to him when he was younger., What doe these mean? I am very impulsive and I am sure my daughter was embarassed to have been even in the same airport with me when I was escorted off the plane and straight to jail. For what I never  knew becasue there were no charges. They released me to my parents and that was the end of it, Yet we found out later on that Portland airport had profiled three other women after me following the same proceedures to jail. Nice!  But ive lived through most of the rough spots constantly teased taunted abused used etc,,,, Its hard to understand why people are so mean and hate so much when a smile or good deed is all it requires to make someone happy. Im not very good at typing because it takes to long to find the keys as the words are rushing through my head. Out of all I have 4 degrees and had a career  for 20 plus years off and on. I didnt realize that there were any problems besides behavioral really until I started to take an inventory with speech impediment on certain words, migraines from hell sometimes 2 or 3 in a row, depression anxieyy etc.... yet my memory is impeccible. I have started on my Phd in Psych and am a third of the way through now I just need to finish it which is my biggest down fall... the finish lines.   Reading all that I have read  has given me a footing on all the years of counseling that never did any good. Now I now why. I just want to thank all those that shared your stories and I wish I could help fix the  hearts of the disenchanted  and the minds of those that have lost  their heads whether through accidents or from the people in our lives that had to  deal with us..

My mother has PTSD, but she does sometimes act like this. I've been concerned for a while that she may have had a stroke. TBI is not something to guess at, right? Except that when you are literally poverty stricken, and even a $20 copay is too much, you cannot get things taken care of. I will never say these demeaning things to my mother, but at the same time, I have Autism Spectrum Disorder. How am I supposed to cope with this when I cannot understand regular people? How am I supposed to take her lashing out and shouting in my face when I first get up in the morning, about something I don't know, because she forgot something? I'm trying to be supportive, but I've pretty much grown up with having to take care of my parents (my dad passed away in 2001 and was disabled for all of my life). I try to word things gently, I avoid entire subjects, I'm tense and ready to be shouted at, but...even if I forgive all that and accept it...it still just happens again. This time, it was a fee for an inspection on buying a house. Its not unusual to forget some detail in a complicated process like that! But I cannot even take a breath to say Anything, at all, without more shouting at me. I cannot distract her without sounding patronizing. If I just say, its okay, you forgot, then she starts calling herself stupid and retarded! I know that I'm better at remembering facts because of my own ASD. But really? I'm not really upset with her personally, but I'm tired already. Seems to me like that's another side of all this, this article takes burnout waay too lightly! Of course, TBI is a serious affliction that deserves all respect, but I think that the people who say these things should be acknowledged and forgiven if they slip up!

In response to "lmb310" -- try brainline's facebook page (https://www.facebook.com/brainline) or The TBI Tribe facebook page (https://www.facebook.com/groups/792052120888627/). The TBI Tribe is a good place to talk with others. =)

My daughter had a car accident Sept 8th and just came home last week. So many people here seem to be reaching out but there is no way to reply or carry on a conversation. Is there a blog or chat for TBI?

My email if anyone just wants to talk to someone who is experiencing the same: lmb310@yahoo.com

My son was in a motorcycle accident Aug 4, 2015 with traumatic head brain injury. He's home now and he's not the same as he was and I'm lost of what to do to help him. I talk to him and be there for him but there must be something else that I can do to help him get better. I cry every day wishing this had never happened and wishing it was me not my son. He actually died from this accident and I thank god he's here. I'm lost of what to do and to watch him trying to do something and he can't breaks my heart. Any suggests of what I can do to help him please email at jo632@yahoo.com Thank you

Many of the items on this list are true and incredibly annoying to hear. I survived a massive stroke just before my 22nd birthday and was told by my doctors that I was lucky to be alive but would probably never walk or have any resemblance of a normal life. The looks I got when I told them I was going to get my GED (I dropped out of HS at 16) and go to college were like they thought I had gone insane. 9 1/2 years later I'm almost back to normal physically (arm function never returned, but I've learned to do everything one-handed) I'm an honor's student in college and run my own home business. I'd like to see the looks on their faces now! 

I suffered a tbi on Dec 7th 07. Fell from ladder when working working on a customers house. My injury were life threating. Although I had a closed head trama my brain still received substantial damage. The after math of my injury was trumatic not only for me but for my wife and 4 children. For at least 4 months I was almost a non functional person. All the 9 things that you don't want to hear I have heard. Sometimes I become angry when I here these things but I pretend it don't bother me. If my head would have been split open and scared I would have some validation of what I go through on a daily basis, even years after. I look fine but inside my head the suffering goes on. Positive thanking and a loving wife and sons and daughter have helped me over the years. I wish the best for all that have gone through the same thanks I have gone through.

I was in a terrible snowmobile accident in February 2015. I had a helmet on but when I hit the frozen ground, my helmet broke into six pieces. I sustained a fractured skull, a brain injury, a broken back, damaged my liver, damaged my spleen, and broke all my ribs. I was in ICU for 2 weeks and had to have brain surgery. I was in the hospital for 6 weeks and out of work for 5 months. I already had depression and post traumatic stress disorder and now my accident has caused my mental health issues to progress. I have no engery and I have been fighting to get my endurance back. It is a hard struggle to move ahead and many people are hurtful and state a brain injury makes you a "tard" or pyscho. I am glad that I am alive and I am lucky I survived this ordeal.

I sustained a brain injury, December 2012 and because of the side effects that this article discusses, my parents and my sibling, have both disowned me. I've been recovering on my own and it's been difficult. I found this article today, because I've been in bed all day with a pounding neck-headache. I'm Comptemplating to call my neurologist. I took my daily pain medicine this morning, as well as an excedrin, neither have not "touched", the throbbing headache.

Thanks for posting this, it helped me!

My situation is so awful in that when I was 4 years old I fell off a pick-up truck backwards onto the concert below my younger sister fell on top of me I woke up blind for an extended period later they took me to a hospital they kept me over night for observation and that was the extent of the medical help. I was responsive meaning I didn't die and apparently alert. The rest of my life changed forever my parents were both orphans & in their late teens when they married and had no concept of parenting or even love for that matter. So the fun begins; I was labeled "slow" because my little brain was trying to cope with the injury to it. I withdrew from family life, as much as possible. Trust me they were not any kinder to each other or anyone else for that matter. Except for this whole mess of a life they created I was the hardest effected by them delaying my recovery process even convincing me that was there was "Nothing Wrong" with me it was all in my head my father who was not educated started throwing out terms around like "the power of positive thinking" but their favorite thing to say to me with so much contempt was I was "different" internally I die a million times. And my very hateful mother would say "you always end up with what you hate in your own home" in reference to me. With no one to understand I found grammar school to be somewhat a place of comfort but I was always terrified of being called on I wasn't a good student in terms of grades but my teachers were always kind and gentle with me and took extra interest within reason. I will write the rest of this from my heart; I am heart broken, I know this must sound so terrible but it has taken literally a near lifetime to realize all of what I was put through and still to this day they blame my slowness as an excuse, not the TBI from a fall that literally change the way I function and how I am treated and all that pales in comparison to what I have endured as an adult who was forced to believe it was that I was somehow a bad person, I fought back defended myself and I still never held it against them except for my parents. Just very recently I finely understand that my mother lies to get attention and used the fact that I am "different" to get empathy from everyone, they were mean and abusive to me I fought back with my siblings never understood what was going on there. They talked about me to everyone they know including other family members aunts/uncles etc. I know now that it is the way my brain processes information that makes appear slow but because of them I hated that I was "slow" making me venerable and insecure exactly because of that fact. It felt like I was locked into my body, never considered it my brain because that would have been too awful. I remember once in high school alone in my room hitting myself on my head out of frustration, crying being so sad, this has always been my secret I've never shared. Such a terrible and fabricated view of my life, what I could not know then was that my brain was learning all the time it used to be worst which is why I did so poorly in grammar school but I couldn't wait to attended college and did terrible there too but found that I was very athletic I played tennis and majored in art. I am actually very talented but I never finished school and it seems like every decade I go back and get better at it. Now I love the whole experience of learning my brain feels better as I learn new subjects but I never had any real self concept meaning I always felt disconnect internally until now but I look at the devastation they caused me out of ignorance, when it was such a simple problem in comparison to what was done to me. It's almost a giant relief to know that my beautiful brain has always worked so hard to heal itself and is still working hard to heal. All these revelations are very resent so how on earth am I going to make up for so much time lost or how I've been affected it? I guess there is no way but the fact that I am isolated from everyone saddens me and at the same time I pray my real life journey can now finally begin. I'm not sure of anything today, because I'm being threatened from so many directions I hate feeling vulnerable, but things must change, I know that there is help I just don't where to turn or who to turn to, because it still feels so awful when people are insensitive or mean I feel it physically because of the way they conditioned me. Lied about, judged, abused over nothing, yet that is what happened here I don't want to feel so alone anymore, so there it is. If dreams are a reality waiting to happen then it will all be amazing either way I must go on I have a son who I love, but I think he is ashamed of me. So thank you for posting this is very valuable information. Please forgive the rant I am in the process of dealing with all this in real time and as I said this is how my brain processes such overwhelming information other wise I would still be in denial, now to find the right help to heal and rewire my life and please forgive any misspelled words. My parents using the wrong terms taught my siblings and they inturn extended their opinions about me to their friends and made life hell and unsafe for me, like I have to justify all that I've experienced it distracted me from the truth and getting timely help, because as we all know these injuries can linger all your life and my even worst my voice was suppressed to the point of not seeming to have one at all. I guess that is one of the first things to change, I must in a healthier way learn to find it.

I was hit by a government truck (ministry of transportation) a hit and run actually.... in 1998 and left in a coma. I sustained a fractured back,hip, pelvis and mandible. I suffer with short term on a constant basis and it causes me to avoid people for the fear that I completely forget my conversation in an instant and feel ashamed and embarrassed. The truck was fixed within a few hours to avoid the public knowing that the driver of the MTO truck was under the influence of alcohol. Not only was I a victim once but twice as I wasn't able to prove their negligence and be awarded what I should have been entitled to. Oddly enough the man (Roy M.) who struck me was at the mediation with my lawyers which speaks the truth of the corruption of government running this country. Regardless I wasn't able to sue as the system is forever blameless. I had to sue my own insurance. If I spoke the words I feel and the vengeance I wish upon them they'd do more than run me over and leave me for dead. Let's just say I wish the same tragedy to all those involved and I hope they get to watch their loved one suffer like I did. Excuse me while I cry myself to sleep with the sheer agony of my body in ruins....pending I don't wake up screaming from the reoccurring trauma every night. By the way it's not about the money, I just want evil cowards to admit their wrongs and give me justice and a bit of salvation. Thanks for your time.

My 39 yr old daughter Julie sustained a TBI  from an auto accident in Feb. 2015. She was in a major hospital in ICU, and their Trauma Unit for 10 weeks, has been in a skilled nursing facility for about 3 months, and is about to be placed in a psych .  She has 5 children ranging children have been split between her fiancé and the biological father of two of them. We were told she would never be able to come home, or take care of her children.  As a mother, you always want to care for and protect your child, and "fix" life she will have to accept is hers now. become so depressed, and frustrated to the point of becoming suicidal.  She had to re-learn basics we take for process, talking, eating, feeding, dressing, bathing, walking, reading, toiletringMy wonderful desperately get controlling her her. Shewants no part of this one. She has little short-term memory.  Her family and children to where they no longer want to want only the best life for her.  If I could trade lives with her, I would in a second.  Within a few moments, her life, and our entire   not only effects the patient, but everyone who cares about them, for the remainder of their lives.

TBI from a motorcycle accident in 1996, Coma and came out unexpectedly alive! I could run lists of all the things I lost but the biggest loss is my own attitude. During the first 8 years or so after the accident I would be the "Glass half full" with things like,"I only walked a half mile with the dogs" being "Hey, I just walked a half mile with the dogs". Since then it's the "Glass half empty" and I can't see the positive side of things. I know it's all down to the TBI but I have trouble with everybody not seeing the "Hidden Disability" and, like many have already said,getting no empathy, sometimes total disbelief, from people that I want to just give up. Finding this place has kindled a little bit of hope and motivation to try and help myself again.

Thankj you.

i was in a road accident 16 years ago. The 'visible' damage is recovered, but these things which i hear almost every day are very hurtful. In addition are "it's all psychological" and "you just use your brain damage as an excuse". I do get very frustrated at "it's just a simple task, why cant you do it?" and then feel guilty and depressed about it. I know there are countless others with worse conditions than me and I hope they all can get the correct support from friends.

I heard all these things for years along with, "you're too smart not to understand something so simple" or when I have to ask someone to repeat themselves they get mad and say nevermind or it doesn't matter. I have goals and things I want and need to do, I make plans to do them but don't and then i'm told i'm lazy. When I ask for help with dealing with total lack of motivation I am told "just try" "just push yourself" "find a way to motivate yourself" well geez really? if I could I would!!! sometimes I have good days where I am I can do some stuff so of course the majority of days where I barely have the energy to breathe are all my fault! Eeverything is always my fault! Nothing I do is ever good enough! I have one friend who rarely comes around anymore and I imagine soon she will be just like everyone else which is gone. I am so sick of liars saying my life matters when all they do is hate me for existing! I might as well be dead because I am not truly alive, I am here and I am suffering and that is it. 

In defense of all the people who have dismissed discarded and disrespected me during the years after my TBI in 1991 and then again in early 2001-5. If I were in your shoes I wouldn't understand, even being in my shoes I didn't understand until 25 plus years later. Everybody loses.

Looking back I even had those "helping" me that were making fun of my injury or me. It took 20 years to realize it. They called me "johnboy" because I must have been acting immature at age 35. And they left me out many times from groups etc. "Clever but clueless" as if it were of my making. The only relief that I ever got was when I was judged to be autistic. Better than all labels.

Boy, do I wish I could send this article to everyone in my life! But, it's been 15 years since my TBI. I didn't even know I had a "brain injury" for 6 years after as my neurosurgeon and physician neglected to make that clear to me, and I was too "out of it" at the time to ask questions. My injury was a hemorrhage during childbirth, so all the focus went to my baby, who needed help too. So I just thought I had post partem problems. The medical people involved in my care, once I was diagnosed with the hemorrhage, were very neglectful of educating me on my future deficits, and what to expect from that point forward. So I struggled on my own until I had a great doctor who made me aware of a local Brain Injury Association I could join. My point is, I heard all these 9 things for years without even having the confirmation that I did indeed have a brain injury and would live with the consequences for the rest of my life. I wish at thaat time, I would have had a list of these 9 things to show people and educate them! THANK YOU for publishing this list on this site. to read the comments from fellow TBI survivors is really affirming that I am not alone living with the side effects, and that there is hope to get better. The list above is SO TRUE! and I experienced all those types of comments along the way. It's nice to see that I had very REAL reasons for having a rough time the 10 years or so after the injury. Thankfully I am very much better now as I have always pushed myself to keep going, for my daughter, and for myself. Keep working at it everyone. You can improve!

Exactly most of them I hear daily. just so wrong :(

Everything here is so true!!

Also, "you look good." People don't understand something they cannot see. Another one, "We're getting older ... everybody forgets stuff." And, "You remember things that I don't ... I can't believe you have a brain injury." (the stuff I remember is stored in long-term memory).

I agree how difficult it can be to hear these things and that, in fact, most of these things said could even be coming from the spouse and that can be most hurtful. I hope you can keep in mind how painful and frustrating it can be for the spouse as well. It can not be stressed enough how important couples counseling and family counseling. This is an extremely difficult situation for the survivor and the spouse and it's truly an unfortunate situation that leaves both feeling very alone in their own pain. I wish the medical field and insurance companies could grasp the importance of counseling together, to adjust together, to grow in this together so that it can be encouraged from the beginning. TBI results in way too much divorce because of the lack of communication and understanding on both parts.

Another one is saying it's like having a child. Or calling me a child. "An adult wouldn't do that". Ok. My husband says many of these things every day and then doesn't understand why I am upset or crying. "Get over it" is another one I hate.

This is spot on! I honestly felt like I was the only one who felt like this.. I was in a Traumatic Vehicular Accident in my childhood and I was diagnosed with TBI. My motor skills, my speech, and my development was impaired from day one. I attended physical therapy afterwards and was rehabilitated somewhat as far as my motor skills, but I still feel clumsy. Throughout my Teens I've always felt different(like I don't belong, like I'm not worth it). My dad was always distant as well as verbally abusive and manipulative(this made me feel much worse). My mom has always been there but she loves me deeply and worries about me greatly, I don't want to disappoint or hurt her with how I truly feel. I'm currently involved in therapy as a young adult struggling with depression, suicidal thoughts, anxiety, social anxiety, a messy breakup, my parent's divorce. I've overcome alot, I'm working, I'm a musician, and I'm an artist. I just want to say I'm grateful for you writing this article and helping me feel like I'm less alone. Thank you!

For the attorney responding 5/13/15:  I was an attorney when I suffered my severe TBI in a car wreck 20 years ago.  My career path nose dove, and I retired.  I understand your comments (multitasking is no-go), and I too appreciate simple things (mostly outdoors).  Don't waste time thinking about the past or persons' perceptions.  Just focus on finding and doing what makes you feel accomplished.  You CAN do this!  (That person who got through 3 lousy years of lawschool 'ain't' gone.  Think about focusing him/her on finding a way forward.  ie. New facts (TBI) but same law (guts bring glory).  Good luck, Counsel!

OMG...I am so there!  Because my BI was caused by medication...there are no external indications...so people don't get that I am not the same.  One of my kids is in the military...and came to our home state on leave recently, with his wife and kids.  I wanted so badly to see them...but he could not understand that I could not spend time with them at his in-laws..where there would be 20+ people milling around...that I needed it to be in MY element.  So...much as it broke my heart not seeing them...I just couldn't do it.  So many people tell me to just "suck it up" and do things...and I DO...more and more...but some things I might not ever be able to.  I used to like being "different" than others...but now I wish I could just blend in AND hang onto my little bit of sanity at the same time.

All of these things can be annoying for sure.  For me almost anything that starts "You JUST",  is the kind of thing that makes me feel like kicking some ones ass.                        A speech pathologist, at group use the 'JUST', work over and over talking to me one day. That was the last time I went to group.                                                                   I JUST needed to make a list.                                                                                 I JUST needed to make a schedule.                                                                       I JUST needed to get organized.                                                                             I JUST needed to make a plan.                                                                                                                                                                                             Maybe, I JUST needed to to him to shut his mouth.                                                                                                                                                                             I have marked loss of parenchymal tissue, gross appearance of encephalomalacia, gliosis and glial scarring, bilaterally in my frontal lobes. A 1x11/2 cm hole in my Rt. temperol lobe.     Lets see that is my planning/organizational, executive functions, and good old memory.                                                                                                                                                                                                                              W.T.F

I get 1 and 2 a lot. "You seem fine to me" "wanna try trading spots?"

Some stuff so true to me. Thanks for sharing.

Just yesterday my husband called me lazy. Is been a year since my head injury and today I been crying about it all day alone I feel as no one understands me I hate to depend on people I want to drive again, work and just be the old me this hurts me and sometimes I ask myself why be alive living in these situation with this head problem I should of just died

A few years ago I could memorize everything I needed for a court trial with no notes.  Now I have a one task brain in a multi-task world.  It forced me into retirement and a very simple existence.  Most days can be so frustrating it's beyond explanation except to shout and curse for a while.  I've lived in this different world for 2 years now.  The damage is permanent.  I enjoy the simple things now.  The laughter of my kids, a sunny day, just whatever.  Those who don't know this world expect me back to work soon.  If they lived a day in my head, they would not ask questions like that.  

Last week my coworkers were asking about something and I could not recall the situation at all. This is pretty typical of me since my head injury. I always need a couple of minutes to focus and try to remember anything, it's really intimidating when people are staring and waiting. While I was trying to remember one of my coworkers made the comment "you're really going to milk this head injury as long as you can," she was joking but it absolutely mortified me. Ever since then I try so hard to avoid situations where I cant remember and I feel like i should never mention my injury again, which is pretty difficult since it is a part of my daily life. Careful with your words.

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