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 things you might find yourself saying that are probably not helpful:

1. You seem fine to me.

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

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

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

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

3. You’re such a grump!

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

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

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

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

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

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

6. Your problem is all the medications you take.

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

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

7. Let me do that for you.

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

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

8. Try to think positively.

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

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

9. You’re lucky to be alive.

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

Posted on BrainLine October 10, 2012

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

Comments

My favorite, at work, by a guy who knew of my accident. "Don't be retarded about it." About materials used at work. I think he felt bad, cuz later came by to help me with something else, something he never does. I didn't mention the owie he caused. I didn't know how. Two years post accident. At least I'm working, pretty good at it too.

My current favorite is "That's not very mindful of you." As a Buddhist there's not much which I take personally, but that one cuts me to the quick.

Just an FYI for caregivers-watch for loops-being caught in a cycle of repetition that leads nowhere. This is extremely frustrating and would be nice to have this pointed out, because most times we don't see it. I saw the above comment and had to add. I get stuck in a loop all the time. As a matter of fact that's exactly the word I use to describe it. My poor husband takes the brunt of it and I don't know how to stop it. I see 3 different doctors now. I'm over 3 years POST TBI and I am straining our relationship. How do you stop the loop??https://babyishcare.com/kids-bow-and-arrow/

Thank you all so much.

I've had my tbi 5 years now.

People just won't get it.

Even those who are close to me.

“Why are you so hysterical” -my brother-

“Are you drunk?” - my dad at 10.00 a.m.-

It’s sad. It hurts.

I invite ALL who have passed judgment, not provided adequate medical or psychological care, accused previously high achieving, intelligent & competitive athletes of malingering, to live for ONE week with their economic means permanently removed, inadequate social & family supports, no restorative sleep, adverse effects of medication, loss of self identity, possibly homelessness...etc, etc.   and see how it is.  As a former medical provider, now a TBI patient most people would not even BELIEVE how we are treated.  My heart goes out to all of us, told we will be better if we accept everything and "move on."   Move on to what exactly?

I would like to add #10 - any statement/advice/criticism that starts with, "You just need to...".  I have come to hate the word "just" and all that is wrapped up in it: simple, willpower, determination, self-discipline.  Nothing is a "just" for me anymore.  Nothing is simple.  Nothing I have difficulty with is the result of a lack of willpower, determination, or self-discipline.  However, it seems everyone is completely unaware of the hidden message of "just".  What is simple for him/her and used to be simple for me no longer is.

Thank you all for posting! I have been feeling the same way since my TBI in 2008 and really do not understand why I look like I am fine and at times can be active but later I am in intense pain without my medication I would be living in constant pain. And everyone hates me these days because I am not up to their standards nor do they care that I been injured. It's been hard thanks again for posting.

I was in MVA 8 years ago, it took nearly 2 years for my cognitive functions to improve enough that I could make it through a job interview successfully although once landing the job it took several more years to develop compensation techniques like keeping a log of everything I work each day, phone conversations etc to help with my memory issues.  After 8 years I still have difficulty concentrating at times and become exhausted from concentrating too hard or too long.  If it weren't for the personal relationship I built with my employer I'm quite sure I would've been laid off.

Recently some new issues have developed that have greatly impaired my ability to work, over the last 2 years I have rapidly developed a connection to the weather that causes my tbi affects to flair up.  The same MVA I hurt my knee and developed arthritis.  The best I can explain what has been going on is basically arthritis in my head/brain.  When it is cloudy/rainy/humid I feel excessively fatigued and often oversleep and will need several hours to feel coherent enough to shower and get ready --- leads to an afternoon arrival at work.  I will continue to feel groggy & slowed mental processing, I hear myself on the phone with clients and I struggle to put together my thoughts and have difficulty articulating well.  I may simultaneously have a migraine or I could just stay in this limbo for the next day or days until the weather front moves out.  My light sensitivity has also increased dramatically during this same 2 year time frame, the weather also heightens it but it exists all the time, I live in sunglasses.  Working in an office the light from the computer screen irritates my eyes after several hours.  The combination of fluorescent lights and the computer screen are unbearable and cause painful migraines, I had to bring in a tall house lamp for my office but most of the day don't turn on the lights at all. However my work requires me to visit clients and sometimes work onsite where I don't have control over the lighting.  God forbid I'm scheduled to see a client during bad weather-- I won't be able to show up until the afternoon and my concentration and ability to answer questions coherently are greatly impaired.  Somettimes I am so dizzy and disoriented from the weather that I am not comfortable driving.

I recently went to see a neurologist but she couldn't grasp that I have a connection to the weather or that half the time I have the fatigue, light sensitivity, dizziness but they wont be followed by a migraine.   The only meds she prescribed are to prevent and treat migraines --so far in 10 days no migraine but there's been 3 days of overcast/rain and all the other symptoms continued to persist despite the medication.   

Does anyone else on the planet have a similar reaction to the weather or am truly the medical oddity the doctors seemed to be perplexed by?

"Was your brain injury self-diagnosed?" -- This from a psychiatrist.

Read your comment about being 16 years post & feeling like you're getting worse. Me too (I'll be 17 years post in June). I worked (and struggled immensely) for 15 years until a seizure. Now I don't work, but I get v easily stressed, forgetful & aphasia starts creeping back in. I was hoping it would all become easier with no work, but I guess I'm still reaching for the acceptance I thought I'd achieved... All the very best to everyone living with TBI 💚💚💚

I don't know where I am at with this brain damage but my doctor told me today that I need to buy a helmet so when I black out I won't cause as much damage to my brain as I usually do and also so I do not go blind

I am 21. When I was 19 years old I had my severe brain injury. With two different bleeding spots on my brain, temporarily paralyzing me, breaking my ski helmet, 3 months of no memory at all around that time,and literally smashing my cheek and nose inward. All of these statements are so true. I absolutely hate it when anyone makes those statements to me. I'm constantly being yelled at by family, coworkers, bosses, and everyone likes to act like they understand. No one comes close to understanding what it's like to basically jump into someone else's body.

16 years for me and I feel as if I'm getting worse. Memory has not gotten better and I'm getting where I won't leave the house unless I have to. Don't like being around more than a few people at one time and when people ask me random questions I get lost. Accident was 1/21/2001 age 19 and I get so frustrated when everyone thinks I shouldn't have any problems since its been 16 years. I hate,"oh come on it's been years you know your memory isn't bad anymore" and "well everything should be better you look great."

I had a head injury in 2012. I had a plate put in my forehead because a the bone was pushed in so far that they couldn't pull it out so to keep from having a dent in my head they put a small 2 in by 2 in titanium plate in my head. I was Mgr of a sales team, made good money, and was the most motivated guy almost anyone knew. Since my life has fell in the gutter. I can't even remember what I'm saying sometimes, I leave doors open, misplace things, have become lazy, can't follow through on anything that is important, can't keep a job, lost friends, have anger outburst, and can't have a relationship. Yesterday my wife told me that our relationship can't continue until I get my life in order and that I emotionally drain her. I've asked her to help me by writing things down and to please be patient. She's so frustrated with me. I can't say I blame her. I'm twice more frustrated with myself. Well I agreed in conversation we had to do better and had all intentions of doing so. But I couldn't get out of my head how hateful she is towards me. In the last few weeks she went from loving me and being sweet to acting like everything I do repulses her. So my mind started wondering. I had a suspicion that she has found a new man that has things going for him. One that doesn't have so many problems. So I did what I shouldn't and looked at her phone. The first thing I noticed was in her phone there was a text from someone named "Slug." When I looked at the text I realized she had saved me as "Slug." This broke my heart. I never have felt so low. I already think of suicide on a daily basis because I feel like a waste. I feel I'm always a burden to people. The way people talk to me now: I'm "slow," "what's wrong with you?," "its your pills," "you make excuses," "you just want to live off others..." If you really know me,  then you know that I've been taking care of myself since I was a kid. Now that I know my wife thinks so lowly of me I'm trying everything possible to not take my life. But it's hard. I never thought she'd be so rude and mean. I don't have any kids of my own. So I feel I serve nobody on this this earth no value anymore. I don't have insurance so there is no cure for me. So be nice to people weather they have head injuries or not. I love her unconditionally. But I know how she sees me now. Ever since she got this new good job. She has down talked me when we fight. Now we're over until I get my life together. I'm trying harder than anybody will ever know. JAG

I was in a head on collision 6 weeks ago. One ton chevy doing 65 ran into me doing 30. I walked away. Beaten and sore and slowly. went back to work 10 days later. again, slowly. I've been noticing more and more a difference in ME. It takes me much more time to get thru tasks. I can't ell anyone though.

I relate to what you're saying. It can feel so isolating. I think its horrible. Just some of the times I hear I look fine but I'm putting on a good act. I feel so hurt. Good luck. I've had my tbi 17 years now.

People don't get it. My mom doesn't even get it. I was in a bad car accident November 3rd in Iowa and lost 2 sisters; my mom broke her rips, her scapula, and had a gash in her head. My 4 year old sister had a minor brain bleed. I was left internally decapitated, had multiple brain injuries, broke my nose, and had blood behind my eye. I finally woke up from the comma November 24th one of my sisters that died's birthday. And my left lung collapsed. I've gotten better so far but I'm still very mentally not there. I get irritated easy, I can't control my anger, or my feelings. It's now march 14th 2017. Even though it's only been a few months it's still hard for me to handle everything. My education is back to normal I'm back at my age level for schooling. But she said I'm acting like a 4 year old. She really just doesn't get it.

I had a freak accident which caused a Carotid dissection which induced a Stroke when I was 31, paralysing my left arm and causing a huge long list of physical and psychological problems, that was three years ago and I can't barely remember what life was like before the Epilepsy and panic attacks. My friends and family try to deal with me and all my weirdness but it's tough. Fear and depression now dictate what I do, I turned to alcohol and if seemed to help at first, I thought I'd found a cure, though all that happened was I got really fat and unhealthy. This is the first post I've read where people my age talk about having a stroke. In a weird way it's nice to know I'm not the only one, thanks. One other thing I'd like to mention is that I've been surprised to experience some hostility from people who resent the fact I don't work and I'm on disability benefits despite being able to walk and talk.   

I agree with all of these; I was injured in an MVA Oct 2016 and am Just getting used to some of the effects of my TBI. I was (and occasionally still am) very fearful about what the future holds but realizing I can only do what I can do, and slowly pushing past my boundaries / retraining myself as much as possible.

The "all your medication is the problem" is the one that gets me the most.  I would not be able to live if I didn't take it.  

It is so good to find out that others have been through the things that I went through.  

I have a friend who has a TBI injury 30 years ago. I definitely see signs of apathy memory issues motivation and coordination issues. His family is in denial. They think he can go out and get a regular job like a regular guy. I don't see this ever happening. He is very good looking man and is on SSDI. BOTTOM LINE. ..They don't want him as burden. . Even though family has lots of resources. Any suggestions or anyone relate to this.

Number 7-9 are so much more relatable to me than any of the others, and I've found myself repeatedly saying them. I've very recently suffered a TBI, and whilst my bones and physical scars are nearly healed, I'm now starting to suffer with the reality of my TBI. I often find myself in tears from fear of what the future holds for me, and how much I will or won't recover. It's easy for people from the outside to say 'things will get better', because of how quick my physical recovery has been, but now I feel as if though they think I'm fixed, and am just putting on this 'act'. I feel a lot of the time they say the things stated here as they're either bored of hearing my moans, or because they think it's because I want the sympathy. I feel that finding this website this afternoon is going to be a big help in my recovery, people feel the same way as me and it's reassurance that I'm not making things up in my head

Great list, though I do not personally like being told I am strong or brave for having survived what someone else did to me. It does not take strength or bravery to survive a mild-traumatic brain injury, or to live with a stutter, cognitive issues, sleep deprivation, mood swings, headaches, tinnitus, or the back injury I sustained at the same time; all it takes is for someone to not look both ways before driving their car across the highway and into my motorcycle.

Instead of calling me strong or brave, just acknowledge a preventable thing having happened, and the associated permanent injuries have changed my life forever. I do not want to be brave or strong, anymore.

I am 17 years old. I've played contact hockey all my life and got hit in the head 3-4 times average each game. At first I didn't have any signs of brain damage but through the years I have 70% of symptoms (irritable, forgetfulness; more than the average person), concentration issues, insomnia, anxiety, depression, headaches that get worse, sudden blurred vision... the list goes on but I cant remember them all. And I think the worse of it all is that all my doctors are brushing it off as its all in my head and there's nothing to do about all these problems as my grades at school have dropped so much I fail all my classes... even the ones people take for an easy credit.

i seriously don't know what to do anymore.

You'll want to find a place that specializes in neuro rehab. Depending on the severity of his accident, there are inpatient neuro rehab hospitals across the country that provide 3 hours of therapy a day while also providing medical and nursing care. If the accident is less severe, there are outpatient physical therapy centers that specialize in neuro rehab for speech as well as occupational and physical therapy. You can start my googling neurological rehab centers near you. Or, if his case is very severe and he wouldn't yet qualify for a rehab hospital, long-term acute care hospitals offer a lesser amount of rehab, focusing more on medical needs. If his insurance won't cover that, you'll need to search for a nursing home that offers rehab services. Hope this helps.

I have a friend whose boyfriend was in an accident, and she texted me to see if i could help. She says that no one in the hospital wants to work with him. She didn't tell me why. So she asked me if I could get information and maybe try and help him with his speech. Can anyone recommend anything that might help? I'd be grateful.

It's been 3 years since my very severe TBI from a car accident in December of 2013, or so I'm told. I was serving on active duty in the Air Force and somehow went off the road 1/2 mile from my house and hit a tree on the way home from work after a 12-hour overnight shift. It was the kind of accident nobody thought anyone could have possibly survived. After being airlifted to the trauma center and weeks in the hospital I finally started to realize what happened. I had Post Traumatic Amnesia for 6 weeks. That period is so difficult to understand because I have no memory of it at all. I was conscious and even recognized people and could talk to them, but I couldn't retain any new information. I don't know how many times my family had to explain to me what happened. My TBI at least made me immune to the pain from my broken leg, foot, chest, ribs, and collarbone. Once I was able to start remembering again and move to the rehab hospital, I finally realized the issues my injury was causing. I had a lot of trouble thinking, remembering, moving my right side. To this day, my right side is weak, and my sensation of feeling is very weak. After 5 months in the hospital, it was finally time to go home. Back at work, it was so strange, people were shocked to see me walking around. They heard I died. It was true enough that my supervisors weren't sure I'd pull through in the first few weeks. After 3 years, I've come to the realization that my right side issues are permanent. I go back and forth between feeling lucky to be alive, and so angry that I still have disabilities from my injuries. I had to be retired from the military from my injuries and to this day feel so strange that I'm actually a disabled veteran now. I wish more than anything I could go back and stop this from happening but then remind myself that I just have to move on and adjust to my new reality. It's frustrating because people have no idea that anything is wrong with me; I can talk, walk, do most everything. What people don't realize is how hard it is for me to actually do those things. I've explained to people that yes I can take a dish from the dishwasher and put it away normally, but when I lift that dish, it feels like it's 50 pounds to me, it isn't easy at all. I'm so grateful that I can do everything that I can do, but frustrated with how hard it is to do it. 12/20/2016

I had a stroke 2 years ago at the age of 33. I have aphasia from the stroke among other things. I had to learn how to speak and use language all over again (well enough to fake it to make it). Nobody knows anything about what I go through on a day to day basis. Whether it be trying to clean house (never seemed to irritate me as much or take as long, what was I saying?), oh yeah, calling to make appointments (wow people are rude), getting ready (see ya in 3 hrs; and I might need a nap after), figuring out what to cook for dinner (it my brain hurts among other things), oh the list goes on but seriously I can't remember. Everyone thinks I'm stupid; hell half the time I'm convinced of it too. It's a struggle every day. My husband no longer wants to spend time with me because I forget stuff (I'm still cheerful) he says I'm too annoying. Well, thanks! I'm all alone and I almost forgot I have 2 teenage boys that hate me. Everything has changed for the worst. No one makes it any better. Only worse. How the heck do people make it through this?

A neurologist once said to me my mild closed brain injuries were "Water Under the Bridge".  As if brain injuries just mean nothing over time.  I found a study on football players (of course they are getting all of the attention) that I think the white or grey brain matter continues to break down years after the injuries. Another worthless nurse once said MRI and CT scans can pick up all brain injuries. I hate needing to turn to the medical establishment when I encounter medial so called professionals who don't even read any of the latest literature on the brain.  It is shocking to learn how much doctors are not taught and will not learn on their own. 

I am just convinced I need to "fake it til I make it" for the rest of my life, and apologize a lot for the mistakes I constantly make that I can't even remember happened. No one cares, no one is supportive, no one even believes me, I am a burden to everyone, and no one is going to help me out but me. So I just have to do it. No one is going to hold my hand or tell me it will all be okay. They are just going to be annoyed with me because they think I am mean, rude, dumb, and think I don't care and that's that. My sincerity will just be my solace, not meant to be recognized by anyone outside of myself, just known to myself as the truth I have always lived. So now I know how it is for stupid people: not much different than having anxiety as a smart person was, but with less data recall. Invisible disabilities really suck.

Maybe this isn't the right place but I have nowhere to turn and ask I can't find anywhere else that I can post to but It's been one year since my injury I was hospitalized for a long time after and now since the anniversary date of the accident I keep waking up in the middle of the night at the same time that I used to in the hospital and can't sleep at night again. I'm really feeling in so many ways the same as I did before can someone please help me and tell me how normal this is?

I got a moderate TBI 10 years ago  from being electrocuted and falling off a ladder at work. I've been on all sorts of medications and have been in therapy. Before the accident the world was my oyster, so to speak, but now the world is just a some weird place I'm living in. The first 5 years after my TBI  were most especially difficult for me because of my bouts with depression, suicidal thoughts, panic attacks, night terrors, and delusion thinking. The last 4 years I've been struggling with a gambling problem that may or may not be resulting from my TBI.( Some studies I've read suggest it does. I looked up the Iowa Gambling task and the Somatic marker Hypothesis). I tried to go to school (community college),but found it to be to difficult to learn. I was taking about one class a semester. My concentration skills  are messed up. But what I want to say is that when people say these 9 things to me- and they have- it doesn't bother me for several reasons. First, I don't expect them to understand what I'm going through because they haven't gone through it. Second, I understand that they are probably just as upset with my condition as I am. Lastly, I understand that in most cases they are just trying to help me get along in this world and help me to survive and maybe get better. And I appreciate that the people who are still in my life today, are treating me like they would treat any other person who "didn't" have a TBI  that acts the way I do when I with them. I find it better to be treated like some one as an equal instead of being coddled too because of my shortcomings.

I used to have such girly pretty handwriting before I got sick. Now I write like this sloppy manly chicken scratch. Its the only visible sign of me having a traumatic brain injury unless I'm having a trigeminal neuralgia attack. Life sucks after illness and living with an illness. I'm an obligation and a pity party that I don't want to be at anymore. I'm so over this sad excuse for a life since I got sick. I had the perfect life before. Now I'm just... existing.

Yes. This is so accurate no matter how long it's been since the brain injury. Some days I feel myself going forward fast, and some days I can't remember if I've changed my babies diaper recently or not. OH, and eating, I don't feel hunger or fullness like I used to or remember what I've eaten or when. I have to write down what and how much I have eaten. My brain injury was at the end of 2011. I still struggle daily with it. Sleep deprecation makes it 10 times worse, but with two babies I have to deal. Thank you so much for addressing people with brain injuries.

ain't that the truth "think I forget on purpose"

I was told I may not wake up, if I do I could be this that and the other. Yahoo I am still here today suffering common problems Arthritis Pain etc. But things could be worse I could have been dead. And my five beautiful children to 3 mothers wouldn't be here. My brain injury is a disability but no one can see that and I cope with it well. I pray to one true God threw Jesus & that is my answer cause he hears. I am not here to preach just to mention what works for me in coping.  Thanks for all the great input from all.
Be HaPpY. From Lewy

I hate living with a TBI. It's been 12 since my car accident so everyone assumes I'm just grouchy or having a fit. Or if I'm aware of it I can make it stop. But my girlfriend doesn't understand there's nothing to stop. It's not something I have control over. I try and read what I can to understand what others are going through but it still doesn't mean that I can change where I go. I mean I try because I hate being out of control but it's not a button I can turn on or off. Then she gets mad at me and stops talking to me and it just makes it so much worse. When that happens I start to feel like I'm already dead inside. I just need someone who understands I'm really trying and need to talk about things and not burry them. I just don't know what to do anymore.

My brain injury was so bad the doctors thought I'd never wake up, then I'd never talk, then I'd never walk, then I'd never breath on my own again. I overcame so much, I even had amnesia for two years, reoccurring too. But I overcame it all. But now, now everyone just thinks every time I say I forgot that I'm just being lazy and I don't want to remember. Because I overcame so much they just think I'll be fine, I'll be normal. They think I forget on purpose or I'm not even trying. I hate this, it's been years and I'm lucky to even be able to walk ! But they just keep pushing me every time I say I forgot they roll thier eyes. I really feel like sometimes the coma was the easy part of this all.

10"x 25' long oak limb fell from 30' up on me in my back yard, nurses said I was lucky; all I could think was, no I'd have been lucky if I watched the limb fall from a safe distance.

I had a stroke when I was 35 and couldn't walk or write and couldn't remember anything I did a lot of therapy to be where I am today but my brain is not the same I have tried to explain that to some people and they say your fine it is all in your head, the stress, the depression and anxiety and when I say "no" to social things I get pushed into it and it makes it worse. I was with a friend and her daughter today that I haven't seen in 2 years and told me about about this website. She was understanding of the way I think and saw to it that at the end of our visit that I was laying down. She said, "your brain is tired and it needs to rest from all the stimulation." It was the best thing I ever heard. She got it. Nobody else has ever said that to me. They would just say "you're tired? what is wrong with you?" and the part that she said about "it was the stimulation" was the best because she has read all about it!! I have been reading all the stuff from your web and feel very relieved that I am not crazy and/or I get what's wrong with you why are you in bed I have it way worse than you and your so disorganized just get organized!!! I felt when people say that it makes me feel worse. I work hard or as hard as I can and try to raise a family at the same time. It is way harder than it ever was starting something and going to another and not finishing any of it because I get to confused. I wish everybody's friends and family members could read your web pages when somebody has a brain ingury. Like it said in your article: that I may look ok on the outside my brain is not the same. I just have to thank my friend and her daughter for them coming over today and showing me brainline.org it is the best I have ever read about thank you 💜💜

I had a stroke 14 years ago and I find myself repeating things. I am on some pretty sedating medications. I feel stupid, even though I completed a Master's degree post stroke, got married, learned to walk again, drive, have taken up latch-hook and macrame and adopted two new pets. I wish I knew what was going going on. I am a lot more obsessive than I was pre-stroke. Did anyone else have this problem?

Wow! Thanks for the sharing. I have a 30 year old son with 2 TBIs. (Two different traumatic accidents.) Hearing your experiences and honesty helps me understand brain injury better. God knows I was blown away at how catastrophic brain injury can be. Best wishes.

Dear reservist in Florida: Thank you so much for your courage and persistence and for helping us all by sharing your story here.

I tried a spiderman trick off a rope swing on the river. Did it 3 time correctly. Then my hands could not handle it any more and let go prematurely. The water was 18 in deep. I cant walk right. I cant speak right. Memory sucks. Vision slightly worse. Loud prolonged noises bother me real bad. I get scared of sudden noises a lot more than i used to. My body feel like how a wringed towel looks. Sleep is bad. don't dream too often. I wake up confused and like my body is made of clay. I feel devoid of "spirit". I live alone. And have for sometime. Temps inside my florida home get suffocatingly hot and sometimes cannot even get up to turn on the air conditioning or a fan.I don't think i feel paralyzed.  Haven't even touched my guns since it happened. (I enjoyed them so much I would go out of my way to clean and work on and provide necessary supplies to people free of charge). I was raised in a volatile, pessimistic, patronizing, parentless environment. Ya probably know what that can do to a person. I was in the army national guard. It didn't pay much. And the 125 mile commute to ocala. Took a lot out of me. The closest "coworker". lived 85 miles way in jacksonville. I was the kid who sat alone. And did not have or the opportunity to make money growing up . So i didn't turn water into wine. Was homeless for all but 2 months of my 3 year career. I wouldn't talk about anything because honesty is a weakness. So none of them knew. I would miss drill here and there. I couldn't use my situation as an excuse. I was counseled on how i need to know my limits. I tried to compensate. They wont let you join with congenital scoliosis. I caught some hassling for collecting all the unused stuff from eveyone's MREs. I said i needed stuff with long shelf life for a bugout bag. Everything was harder for me. I got kicked out for unsatisfactory participation. Still haven't told anyone about my back or head injury. Haven't talked to or emailed anyone. The only social interaction i had with others was when i went to drill or checked out at a store. Never had friends, male or female growing up. I Feel like castaway.

I've been brain injured sense 9-07-88 , my skull shattered into my brain in Mass General hospital they removed all of my commonsense, parts of memory, parts of speech, parts of behavior, parts of motivation. yes I look fine and yes it takes about 10 years when you start to almost feel normal! But even my wife is like "you're lazy" but my mom she goes to bat for me every time, she was in the hospital when I got there September 7, 1988 - December 21, 1988 every day and when they thought that the doctors would need to remove my left eye, mom offered in the mass General to give me her left eye but they informed her that they do not handicapped one to help another!

Sub arachnoid hemmhorrhage Sept 14 Cognitive problems persist, attention and memory amongst other things. Difficult to live with

My heart goes out to everyone here. I have had two freak accidents that left me with brain injury. And I can relate to most comments. Only God has given me hope to go on. This type of disability is worse, people cannot see it, and if you tell them, they forget or do not understand. Heck, I don't even understand it. :( Thank you for all your comments. It helps.

I have a TBI injury & it is a life changing event you don't want to have. Your life is lost in fighting all the associated problems that comes with a TBI injury. I have a "closed brain injury" & every day is another struggle to get thru.You feel that there is no purpose in life & living on drugs is pure hell. The signs of TBI aren't transparent & you have to have a basic understanding before you can began to understand the challenges we people face each & every day. It drains every bit of life out of you & you have to try to stay the course to get better & overcome this deadly injury. It's like being on life support each day.

I have had almost all of them said or done to me and I think I am emotionally strong considering that I just went through an abusive relationship before the head injury.

Pages

Add new comment

Plain text

  • No HTML tags allowed.
  • Web page addresses and e-mail addresses turn into links automatically.
  • Lines and paragraphs break automatically.
CAPTCHA
This question is for testing whether or not you are a human visitor and to prevent automated spam submissions.