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Dr. Jeffrey Kreutzer: Dealing with Unpredictability and Uncertainty After a Brain Injury Loss of Relationships After a TBI Is Often the Most Devastating Outcome

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One of the situations that comes up is you have a person, for example who is injured at work. And all of their colleagues, they see what happens— the person was crushed by some falling lumbar. And their colleagues are like "Oh my gosh, you know we'll be there for you forever." But, what happens over time is—3 months after the injury the person looks fine. So, the friends come to visit, and the friends have— they bring the message back to other people at work, and they say "Hey, I've seen John." "He was hurt at the worksite, and he looked bad the first couple of weeks, but he's looking pretty good right now." "But, you know what, John says that his doctor tells him that he's got really bad memory problems, and he's not coordinated, and he can't multitask anymore, and—but when I looked at him he looked really normal to me." "I couldn't actually tell that there was anything wrong with him, but he's saying that he is so bad off because he had this brain injury— he's so bad off that he can't work anymore." And, so then what happens is the guys at work start thinking "Oh my gosh, he's kind of figured out how to beat the system." "We'd all like to get paid, and we'd all like to collect money for doing nothing." In the meantime, here's this person who has been hurt, who is following his doctor's directions not to go back to work because if he goes back to work he's going to have another pile of lumbar fall on him, or get hit by a fork truck that is backing up and he can't— doesn't have the coordination to get out of the way. So, here's his friends thinking he's got an easy life, and he's living off the system, and they don't want to talk to him because they wish they were in his situation where they cold get paid for doing nothing. And here he is thinking "These people—I worked with these guys for 5 or 10 years they don't—they said they were going to come visit me— they came a couple times and now they won't return my phone calls." And that's when people start to think "Nobody cares about me." And when people think "Nobody cares about me" they begin to think they're worthless. And when people begin to think they're worthless, they get really depressed. And that, to some extent, is the root of some depresion that people face. Imagine if tomorrow—let's say you have 5 or 10 or 15 really good friends— imagine if all of a sudden tomorrow—you as a person who didn't have a brain injury— people just stopped returning your calls. People you text once or twice, or 4 or 5 or 10 times a day— they stop replying to your text messages The people you called and spoke with once or twice a day, or once or twice a week— they stopped returning your phone calls. You would begin to wonder what happened or what you did or what was wrong with you because nobody wants to talk to you. And if nobody wants to talk to you, nobody cares about you. And it's really a difficult situation. And it really takes people a while to figure out and understand what's happened. Because if all of your friends stopped returning your texts, and they stopped returning your phone calls, you tend to take it personally. "There is something really wrong with me." And, it's bad enough that people have a brain injury, but then they start thinking that you know, they are socially undesirable, they're outcasts, they are not worthy of anybody's friendship. And you hear people talk about self esteem— that's the other damage that occurs with this. It causes a horrible devastation to people's self esteem. And what this is about is the loss of relationships.

show transcriptShow transcript | Print transcript

Friendships often fall apart after someone has a TBI because people don't understand what that person is going through; they might even think he is faking. And in turn, the injured person doesn't understand why his friends have suddenly abandoned him. Loss of relationships and loneliness can be devastating after a brain injury.

Produced by Victoria Tilney McDonough, Justin Rhodes, and Ashley Gilleland, BrainLine.


Jeffrey Kreutzer, PhDJeffrey Kreutzer, PhD is the Rosa Schwarz Cifu Professor of Physical Medicine and Rehabilitation at Virginia Commonwealth University, Medical College of Virginia Campus, and professor of Neurosurgery and Psychiatry. He is director of Virginia's Traumatic Brain Injury Model System.


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Comments [30]

My son was in a terrible car accident when he was 7 years old with his sister and father. He is 26 years old now and has partial paralysis and TBI. He is such a wonderful young man and funny and caring. And so handsome. But we are isolated. None of us have any friends. He works 5 days a week at Goodwill. But he always talks about wanting a family. I don't know how to find friends for him to hang out with or potential girlfriends. If people would just give him a chance then they would see how amazing and kind he is.

Jan 3rd, 2017 11:30am

The loss of friends and even family affects not only the patient, but also the immediate caregiver. Our personal relationship has grown stronger since my wife's stroke but it is exhausting. Her frustration due to expressive aphasia is heartbreaking as I see to be the only one that cares save for one very close dear friend. Our friendship before the stroke was casual before, but since the stroke, she has been a lifesaver and become so close with us that I now consider her more family than most of our blood relations. I feel some have disappeared from our lives because the relationship no longer holds tangible assets for them. She is still the same loving wonderful person she has always been, but can no longer provide the financial benefits she once did. To those that are no longer close... it is your loss. To those that remain, thank you. You mean more to us than words can ever express.

Aug 5th, 2015 1:15pm

To the last commenter on April 18th: I have a 15 yr old daughter with exact same issue. They could be twins! Where are you located?

May 27th, 2015 11:20am

My daughter suffered a TBI and is 6mths post op she's 15yrs old, while she made a great physical recovery and prognosis is positive. Psychologically she is struggling. Her whole life has changed and so called friends have treated her so badly because as she says herself "I look fine but my heads not and no one understands, they think I'm faking and looking for attention". As a family we are devastated our whole life's have been turned upside down. Everyday is a battle be it getting up for school etc, I feel she should be better and try harder she sits state exams this year but has lost all interest and says she can't remember anything. Her self esteem, confidence are all gone and the hurt of failed friendships has been absolutely devastating. Thank u for sharing your experiences cause this may help me understand my daughter a little better.

Apr 18th, 2015 4:21am

Nobody can understand how devastating loosing social contacts only because you have TBI...only who does such experience can understand the daily struggle

Feb 15th, 2015 6:13am

I lost every friend except for one. My parents have said "It's time you stopped talking about this. You don't have TBI." My grown children were sure I made the whole thing up. Getting past the heartbreak almost broke me. Now I am focused on finding new friends.

Feb 11th, 2015 8:55pm

Wow..I thought I was the only one who lost friends and became extremely judged. It's so true that people have really thought I was faking my mood or loss of memory..or the days I cancelled plans last minute because..well depression or no desire to connect with the outside world. Heck..it's still hard 3 years later for me to get myself or wrap my mind around each day...good or bad, so I see how anyone else would have trouble getting me...sheesh.

Feb 11th, 2015 3:46pm

It's the hardest thing on earth getting used to how you are now. the person you become is so different than the person you were that is what people can't understand and that is so frustrating. i feel lost and isolated and feel i can never change that.

Feb 10th, 2015 5:07am

I pray this never happen to anyone. People don't understand and neither do I. Please pray for us all ..ty father God.

Feb 9th, 2015 11:32pm

My husband's ex couldn't handle it after his brain surgery. I'm ok with that, because I came along and have been blessed to call him my husband for five years now. Her loss!

Feb 7th, 2015 10:02pm

This to has happened to me:(

Feb 6th, 2015 5:03pm

I slipped and fell 8 weeks ago and it's been so tough on my boyfriend and I. We have been together almost 2 years living together almost a year. The past 4 weeks though have been so stressful trying to communicate. I have lost the ability to get the ideas from my head to my mouth. I get frustrated at myself so I sigh and he takes it as a let down towards him. The DRS tell him it just takes time but I'm so scared that my fall will have cost us what was such a wonderful happy relationship. I sought out every community resource and got appointments and we're getting help. But it's still a fear. I'm different. I'm positive but so badly just want to be me again.

Feb 6th, 2015 3:24pm

I can Honestly Reply, that as a survivor of a TBI, and following brain surgery, The loss of relationships was devastating. Yes, I was to blame on occasion by the simple fact that now, without second thought, I would not hesitate for a moment to shout out what was on my mind or what I thought of any situation. I can also say that people thought that I was suppose to be 100 percent the same after said operation. I had been controlled and intimidated by the injury and others for quite some time. Because of this, I was so affixed to never letting these situations ever occur again as long as I lived. All told, I finally realized that no one in their "Right Mind" could possibly realize what I was going through, so I solemnly decided to make everyone around me be as comfortable as they could be considering the circumstances. Being on a mission to help them feel comfortable, led me to further extremes of helping any way and time I could to make them comfortable and in the process I made new friends and strengthened the relationships that I already had. As to my family relationships, slowly but surely they are becoming aware of the person that I have become following this ordeal.

Feb 5th, 2015 8:08pm

Thank you for saying this.  I had my TBI right before my senior year.  I felt absent and challenged the rest of that year, all my friends were busy discovering who they were and who they were going to be and I was busy recovering.  My goals in life completely changed and no one understood what I was going through.  After graduation my friends moved on and I was still recovering. Many years later I am now meeting new friends but life is still a challenge everyday.  No one can tell or would even think I have had a TBI by looking at me but my brain still has not, or will ever recover to what it was previously. I have learned many new ways of coping but the trouble with focus/structure, word finding and brain fatigue is always there. Hard to mentally live differently than most others around you and for them to be unaware of why you are the way you are......this definitely affects the self esteem.

Feb 5th, 2015 4:52pm

The time is was blown off roof 42 ft got my tbi in 10 24.2009 2 month coma pelis broke in2 wrist shattered was a day that god was beginning his work reforming me.Now i face my biggest fear...LONLINESS...now my wife is in the final stages of Cancer.Now i will soon have my biggest fear facing me lonliness. I pray God sends me a good lady that lives for god 1st and wants to love me on earth and will share the rest of my and hers life until god calls us home.I am praying god sends me this lady so we can be helpmates on this earth!!!

Feb 5th, 2015 1:30pm

I can't find anyone to understand or care for more than a few months. Everyone has their own lives, but I'm living the same day over again because I can't remember the day before. How do I keep people from becoming bored with me? I've lost the interest of my "friends and family" because I can't be attentive to their needs, and my needs fall to the wayside because they never change: I can't remember five minutes ago, I can't drive, and I get lost easily.They get bored once they realize that every day it's the same issue I'm having trouble with, and it's been this way for a few years, so I've learned coping strategies well enough that I don't appear to be "that sick". Yet everyone's lives move forward daily, and I'm trapped in Groundhog Day.

Feb 5th, 2015 11:51am

Any thoughts on why new friendships aren't created? For our family member, who has been able to return to college, I'm thinking there are subtle social skills issues that could be worked on, like they do with Asperger's. This is such a common and HUGE problem I would think it would be a major part of rehabilitation.

Feb 5th, 2015 11:34am

I am going through a hideous divorce after a 32-year marriage & 9 years after my car incident. The divorce rate, it turns out, is really high among TBI survivors so couples need to pay very close attention to their relationship! http://youtu.be/Hs3J4Bwe9kw

Jan 30th, 2015 11:24pm

My god. I thought it was just me. That was the killer blow for me when my ex kept saying "why can't you be like everyone else" her idiot brother also kept saying "isn't it time you gave up on this head Injury thing" it destroyed me but I was trying my hardest to get better. No one understood. The more I saw what I was loosing the more I got angry and frustrated. Here I am now thank god, but a shadow of my former self. You know what through. The very few (2/3) people that did hold on, kept me afloat and I've seen it through. Still struggling to accept that I cannot do what I used to do. So I took up artS nickhendry art.com. Love it and it's also kept me going. I wish you all all of the strength in the world. I think it's easier just to accept that it is the "new" you that exists now as hard as it may be.

Jan 4th, 2015 5:30am

So Blessed my husband and family have been there for me and still are!

Oct 11th, 2014 10:43pm

So very true...it is heartbreaking to witness over and over and then have family even not understand.

Sep 3rd, 2014 12:01pm

So true on the Friends not being FRIENDS.GodBless

Jan 12th, 2014 12:32pm

I am 16 yrs since my TBI. Loss of all social and business relationships; Marriage utterly changed to say the least. Still living together but haven't slept in the same bed since shortly after the TBI. I do not know how to articulate how we as both a couple and individuals ever got through all the BS etc we had to contend with because there was no one else to be trusted...suffice it to say, maybe the closest experience to a living hell as one might imagine and I don't think one can.

Aug 1st, 2013 1:36am

Dr. Jeffrey Kreutzer voices the loss of relationships so well, I began to think. . .has he experienced this? Thanks Doc, for years I wondered why no one addresses the self-esteem issues. Suicide is also an issue no one wants to touch. It's a reality, and if everyone thinks it will just go away. . . when will people stop ignoring the elephant in the middle of the room?

Apr 22nd, 2013 7:59pm

Both sides in the intimate relationship have it very rough. Most of the time Family and Friends become too busy with their own lives to stand up and help out which would actually help both of them. Carers don't get a chance for weekend breather and rejuvenation. TBI includes STROKES by the way. A tremendous amount is lacking to assist both in our "Care" system. Where's the Respite Care? The Positive Motivation Station? A real support effort is needed! And you Drs and Therapists out there saying, "This is the best you will ever be" are real s---s! You need to be saying, "There's so much room for improvement but you will see it in smaller increments and almost out of the blue if you keep working at it!" Quote me on it!

Apr 16th, 2013 9:29am

I lost my whole family and all my friends from my TBI. People still treat me like I\'m a third grader even years after my surgeries. They still think they can catch it like it was some spreadable virus. I still can\'t find a job, homeless number of times with no one wanting to help. I want to hold up a big sign saying\" I\'m still a normal human being with feelings as before my TBI\"I just face it I\'ll always be alone. Treated it like a outcast.

Apr 15th, 2013 5:37pm

I was in a car accident at age 20, almost 15 years ago, and have been dealing with my TBI ever since. I have had minimal help or support from my family members. For years they either assumed I was faking my injury or treated my like I was severely mentally handicapped and could not do anything for myself. I was always a roller coaster of emotions and caused me all kinds of anxiety and stress. Friendships that I had had from grade school fell apart, and I didn't know who I could trust. Now so many years later I am still learning who I am now as a person, and have just started morning loss of the person I was before I suffered the Traumatic Brain Injury.

Apr 15th, 2013 11:55am

My husband fell off a ladder in 2010. After 3 yrs. of being emotional and mentally drained from not doing anything right, I had a nervous breakdown and was in the hospital for a week. I have gone to counsling, but he thinks he doesn't need the help. My kids who are adults are gone and I have know one in my family who lives close to help, but my husbands family thinks he is fine. They don't see every day what I go through. My husband has drained all our assets. We are now in forecloser and file Chapter 7. I can no longer put my heat and soul into this marriage. His health is bad because of his diabites and he eats whatever he wants. I'm seperated from him at the moment. I have lost everything after 31 yrs of marriage. I thought if I left it would be a wake up call. It's even worse. I have to start my life over at age 56. I hope he will get the help he needs.

Apr 13th, 2013 10:30pm

My partner had his severe TBI a year ago yesterday. I am failing carer, because i am leaving. everywhere I look are criticisms of family and friends that have 'abandoned' people with TBI, and were therefore 'insencere' in the first place. It is not easy to be criticised and belittled every day, to be yelled at, called dreadful names and denograted in front of family and friends. To be told you are always wrong. always dumb. To be told all the issues are your fault, and therefore they do not need to seek counselling, to admit emotional and behaviour probelms to therapists, or take the medications. So yes, i cannot understand how hard it is for people with TBI. But it is also not easy for carers. For 6 months I was in the hospital all day every day. My love was sincere. But i just can't cope anymore.

Apr 6th, 2013 7:15am

I am seven year's years out from my TBI. when I went through rehab I had to mourn the person I used to be and accept the person I am now. I have a wall of my accolades pre-TBI. Awards from three different Governors, Letters of praise from Commissioners. I see the photos and know that guy, but I am not him anymore. My wife commented last night as I watched a show on TV and laughed out loud, she says the years of no laughter and silence were the hardest part. I was injured on the job in 1987, 12 spine surgeries to date. I retired in 2000 because of the spinal injuries and suffered the TBI in 2006. I tell people I would do all of those surgeries again if it could erase the brain injury. I am now a fifty one year old college student who is trying to find my place again in this world. Faith and hope persist even in pain. Love that is enduring will survive and friends that quit calling are not the friends I need.

Apr 3rd, 2013 3:16pm

 

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