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.
About the author: Jeffrey Kreutzer, PhD
Jeffrey Kreutzer, PhD a Professor of Physical Medicine and Rehabilitation, Neurosurgery, and Psychiatry at VCU. He serves as Director of Virginia's TBI Model System, a position he has held since 1987. He also coordinates VCU Health System outpatient services for families and persons with brain injury.
Please remember, we are not able to give medical or legal advice. If you have medical concerns, please consult your doctor. All posted comments are the views and opinions of the poster only.
Anonymous replied on Permalink
After reading through this, I'd say it's pretty one sided. I realise tbi is more common in the elderly, but young people have this too. The younger you are the greater your chance of recovery. Youth means some broken pathways can be repaired or redrawn in the brain, so we can sometimes get some of it back. But a support network is needed. With family, friendship and therapy a few can make remarkable progress and aggression and depression can be avoided. But scars, and physical disabilities like limited movement will always be a warning to strangers. Understanding is key. I think my little sister was afraid of me until I reacted and yelled at her in the beginning. She said I acted like a zombie until then. When she finally recognised some part of the old me.
It's too easy to say tbi = personality defects and learning difficulties. I've never struggled to grasp the points people make, but in some instances people will decide my actions are aggressive if I defend a position in debate, and all too often im accused of not understanding. Or being too spirited. I find this very unfair if I know what I'm talking about. I'm not dumb and well read.
The consensus is tbi means mentally frail. But my injury, a hemorrhage followed by surgery at just14 was successful. My risk of a fatal bleed was removed and my recovery has been described as inspired and near 100%. I completed my education quite normally, got full mobility back, and attained a Degree and job in a highly competitive field. But my physical disabilities (a left weakness, resting tremor), mean my injury is always my first impression, so my chances of progression in work and life and love has been limited.
I wish the medical community would stop suggesting all tbi's leads to aggression, and cognitive issues. This is not true.
A great many injuries result in mild conditions perfectly manageable. The issue appears to be if your invisible illnesses begins to affect your performance or stamina. In work and life, build up of responsibility leads to overload, which affects me differently. Then what?
Better integration through increased awareness could lead to less segregation. Which would be a positive influence on risk of self harm or suicide. I'm 37 and don't expect to realistically get married. Despite this being my no. 1 objective before my injury.
Some breakups have been very hard to accept, because she hasn't wanted to be callous, so I rarely get a reason, just the normal: I'm too busy, your too busy, I need a change etc. Almost every friendship runs the same familiar course too. Why is keeping friends so hard? I still don't think anyone understands what tbi fatigue really feels like.
On a positive note, I made a relationship with a woman with aspergers work for more than a year. There's always an effort, and hope. Motivation can do more than the most accomplished doctor. My family did that.
Anonymous replied on Permalink
One sided. Good luck to you - tbi is awful - you are a fraud
Jen replied on Permalink
Wow- this is so hard. About 8 years ago, I became very ill due to a rare autoimmune disease that I didn’t know I had. At the time, I was a normal 37 year old wife & mom, with a busy, full life. This disease attacked my autonomic nervous system, which affected me in a lot of ways, but primarily, I became unable to maintain my blood pressure while standing. It was gradual, one day while chatting with a friend, standing next to her desk, I remember feeling dizzy, then I fainted. Within 6 months, I could not maintain consciousness even sitting upright. It took about 6 years to recover, but within the first 2 years, I had so many fainting spells, that I ended up with more than 20 concussions, at least 5 of those were pretty severe. I am lucky. I recovered so much more than we ever thought would be possible. Even so, I lost 50% of my once 20/20 vision, now legally blind. Permanent damage to my pituitary gland, loss of certain cognitive function, and about 4 years of complete memory loss. I wasn’t in a coma, I didn’t have amnesia. My short term memory just didn’t work, so that time is lost. One day, my memory started working again, but I was stuck 4 years in the past. That was about 18 months ago. I’m trying to adjust, but it’s not easy.
I guess my personality was just completely different from my normal mild-mannered, good natured self. I became confrontational, and would easily become emotional. I spoke loudly and seemed aggressive I guess even when I didn’t feel that way. I did not comprehend how dangerous my condition was, and was constantly taking risks, therefore continuing to injure myself, incurring more head injuries.
I ended up spending about 6 weeks with family and friends back home, to give my husband a break, as he was caring for me full time. I live in the Midwest now with my husband & kids after moving here about 15 years ago. All of my family & close friends lived out west in Northern California. They were all so worried about me and wanting to help, so they arranged my trip and I was going to spend time with my 4 very close, lifelong friends, my brother and sister in law, my best friend, and my dad and stepmom.
Long story short, I came home 6 weeks later and absolutely no one was speaking to me. This was 6 years ago. I have absolutely no recollection of anything- I don’t know what happened. I’m fully aware that I was almost certainly completely to blame for whatever happened, but I don’t remember.
In the last 6 years, I’ve tried so many times to fix what I had done. Of course, because I do not know the specifics, I can only apologize for “whatever I may have done to hurt you”, to cause or create chaos, to inconvenience anyone, etc. I’ve asked each individual if we can talk about whatever it was that I did so that I can be properly remorseful, but with the exception of my parents, no one else will even speak to me about anything. For the most part, everyone just ignores my attempts to contact them. It’s like I just do not exist to them. The only explanation I’ve been given was by one close friend who told me that: “You just aren’t the same person, I don’t know you.”
I cannot move past this. Everyone seems to have turned away from me. I can’t seem to forgive myself for losing my lifelong friendships. My friendships in my new home have also faded, as often happens with major illnesses and injuries. I get that. But it’s so hard to accept that people who have known me for my entire life are content to live their lives without me in them. I’ve tried multiple times, and the rejection is soul crushing.
I think it’s preventing me from moving on and rebuilding my life, and making new friendships. I’m terrified of rejection and nothing makes any sense to me.
Natasha Y. replied on Permalink
I have lost my best friend (of 38 years) and her beloved family because of a comment. If they really loved me they would have googled TBI.
I'm mad at her though for not having my back; them for not holding her accountable. This is the hardest thing that I am continuing to go through, who knows for how long, where is her compassion? Her family has been there when I reach out, but it was just too hard to continue coming around. I don't trust anything anymore. I can't keep up just talking with people about easy things sometimes and I can get easily confused; this is the scariest. It wasn't like this as much at the beginning, I don't think, All of my issues continually got worse. I've lost work because of it.
Aiden replied on Permalink
Your loss is as much their loss too. They possibly have 4 years memory of visiting with a very bleak outlook. Think how negative doctors speak.
They've maybe heard horror stories all that time and hoped it was wrong. Then find it's part right.
Finding that one best friend is key. My friend was actually someone new, they accepted my condition tbi and for 12 years her friendship meant the world to me.
I believe the ignorance around cognative difficulties makes it quite hard to keep old friendships alive. I noticed every school friendship dissolved early for me. Then university friends class mates and flatmates. I find my world is very small now but still make efforts to create new friends often. An activity could help, especially if it provides therapy.
Kat replied on Permalink
I think the biggest thing is getting the rest, proper nutrition, and exercise that your body needs and can tolerate. Take care of yourself and get counseling through free programs like celebrate recovery in your community. It will be helpful to be able to verbalize what you’re going through in a safe environment where people will listen and not judge you. Just work on yourself right now. It’s a good time to do so after this Covid virus thing goes away of course.
RAQUEL TOVAR replied on Permalink
I have a TBI. I've had it really difficult with family relationships before TBI. Afterwards, I'm going through a divorce and hardly ever speaking to family. The good thing is that I'm close to my son. I get mad sometimes but it's more about pain and hurt than anything else.
Nadine replied on Permalink
Hi I too have a TBI. And my family also was not very good prior to the injury, but now I have absolutely no relationship with my family at all because of the TBI and my behavior. I had a good relationship with two of my sons, but one of those sons has chosen to completely push me out of his life recently and that has been devastating to me. I have a beautiful grandchild from him and he only wants to talk to me when he wants something from me. I think the TBI is only part of the problem, the rest of it is a dysfunctional fractured family life. I wish you well.
Selena replied on Permalink
I too have lost relationships. My boyfriend of 10 years left me for another woman I lost my daughter after she reported sex abuse by her dad they said I made her lie and I've lost my job my home and most of my family and friends. I don't feel different just am different I guess. I had diffuse axonial sheer injury from being hit by a train. It hurts so much to be this new person no one likes or trusts I am the same person!