10 Things I Wish My Doctor Had Told Me About Mild Traumatic Brain Injury (mTBI)

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1. You can’t push through.  Regardless of how strong or tough or determined you are, you can’t bully you’re way through recovering from an mTBI.  I know you’re going to try, but you will save us both a lot of time if you didn’t.

2. Rest.  I mean completely rest.  Stop work, stop TV, stop looking at your phone. Just sit on a couch, pet a cat, and stare out the window.  I know it’s inconvenient, I know you can’t afford to, I know you don’t have time… but you will really really regret it if you don’t.

3. You need help.  Like – significant help – in every aspect of your life.  You might not think you do, you might not know you do… but you do.  Trust me on this one.

4. Your easy social life and party days are over.  Loud noises, bright flashing lights, even regular fluorescent lights – all those things will suddenly drain your energy and make it difficult to think.  That means you have to plan and strategize every time you want to go out to dinner, meet a friend for coffee, or go to a family member’s birthday party.  Every time.  Without exception.

5. You are missing nuances.  Your brain can’t process all the complexity of communicating with others right now, be it the words or the body language or the situational cues.  That means your ability to understand situations and other people is compromised.  You probably feel different and you know something is missing – it is that easy understanding of the world around you that is gone.

6. The world isn’t out to get you.  I’m pretty sure about this one.  It might seem like everyone is being mean, but in reality you are simply more sensitive right now to others’ emotional variations.  Also, people are going to react when you aren’t able to give them the energy or support they are use to.  Don’t take that shit personally – people aren’t trying to be cruel.  Change sucks for everyone.

7. People are helping you.  You may feel like you’re all alone, that you have these herculean tasks to tackle and no one will help you – but likely, you have people helping you.  You just don’t realize it.  Your perception is off right now, and that can make you a self-involved ungrateful jerk.  But, really, see #6 and assume people who cared about you before still care about you, are trying to help, and you can trust their perceptions about the situation.  It is helpful here to find at least one person you trusted and were close to before your injury (parent? sibling? lover? friend?), and check in with them about reality once in a while.

8. It’s going to take time to heal.  More time than you think.  Perhaps a lot more time than seems reasonable. Any estimate about how long it’s going to take to heal is bullshit – no one really knows, no one can guess.  Expect your life to stay fucked up for the foreseeable future.  Plan accordingly.

9. Your life is over as you knew it.  It’s not fair, but it’s true.  Let go of who you were and figure out who you are now.

10. Love your new life.  The sooner you can start loving who you are now, the better.  Yes, this injury sucks and it’s completely unfair and every day there are overwhelming things that you have to deal with that drive you crazy… and it’s still the only life you get.  Make the most of it.  The most of it might be a lot less than you are use to, or a lot less than you think is fair… but it’s your life.  Love it with all your heart.

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45 Responses to 10 Things I Wish My Doctor Had Told Me About Mild Traumatic Brain Injury (mTBI)

  1. Yes, all of the above. Also, take care of your brain! You can sustain another injury without much effort. Sub clinical concussive events cause recurrence of TBI symptoms. I didn’t know the cumulative effects of multiple blows to the head until it was too late.

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  2. Barbara Thorbjörnsson-Schroeder says:

    You are right on the money in all you wrote. I applaud you.

    Like

  3. Jilly B says:

    Brutally honest and, as Barbara said, right on the money. I really enjoy reading your posts and your brutal honesty.

    Like

  4. Tamalyn Jones says:

    I reposted this on my fb status and askEd anyone who cared about me to read it. That’s how on the spot you are!!! Thank you, thank you!

    Like

  5. Sharon says:

    Wow! Thank you. This puts things into perspective for me. I have a child with autism so different circumstances but such similar results and experiences.

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  6. Laveda Pimpey says:

    I am crying my eyes out!!!! I’ve been through so much the past 8 months. I don’t know whether to rejoice from finally getting some insight to what’s really going on with me or be saddened to the facts that I may never ever be the person that I was previous to the concussion! I’m so. . Torn and sad right now.

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    • rajeana says:

      your words are exactly how I feel right now

      Like

    • Diana says:

      I have been dealing with my mTBI for a little over 16 months. Yesterday, we finally met a doctor that spent two hours with my husband and I getting a detailed history of what I have been going through. My life is a shadow of what it use to be. I was a successful registered nurse with many years of experience and had finally become a nurse educator that was responsible for all hospital education. I can no longer work, have difficulty expressing myself (apraxia and aphasia), as well as memory problems. The most important things I have learned is to be your own patient advocate and have a loved one also advocate for you. Secondly, seek out treatment options, there are places like Centre for Neuro Skills that provide in/out patient therapy for Speech/Cognitive, Physical and Occupational therapies. Counseling is also important, trying to just push through and hiding how bad things are from loved ones and friends does not help. It is difficult to suddenly be dependant on others but people want to help, you just have to be willing to let them.

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      • Renee says:

        I also am an RN who can no longer work. I had a mva in April 2014 and am not the same person. I am hoping with time I will eventually get better.

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      • David Johnson says:

        Contact Victor M. Pedro, MD
        521 Park AvenueCranston, RI 02910
        Phone:401.781.3374

        He is having a great deal of success treating mTBI patients.

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    • Patricia says:

      Never a door closes but another opens. Since my stroke I have conquered cancer, done a half marathon and become my grandson’s homeschool teacher. He has dyspraxia, epilepsy and suffered a TBI. I understand him and can help. From my bad luck came a wealth of knowledge and patience. Yes, the person I was is gone but I no longer mourn for the new me is much more kind and patient. I am a new improved version of the old me.

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      • mary berkemeier says:

        Since my TBI I have been traveling through events in my life not really know what to talk or think about. I never know if I will remember the events. Many times I can leave a room a not know why or what I was working on.

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  9. Pingback: 10 Things I Wish My Doctor Had Told Me About Mild Traumatic Brain Injury (mTBI) | postconcussionsyndromethoughts

  10. Reblogged this on Broken Brain – Brilliant Mind and commented:
    Here’s a great post I found that sounds so familiar

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  11. marjorie561 says:

    Amen, and amen. The idea of ‘no pain, no gain’ is so unhelpful in this kind of situation. Again, amen to all the above.

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  12. Sunshine says:

    Thank you for sharing this. It is so true for me. I thought I was so alone and no one understood. I was wrong!
    Sunshine, New Zealand

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  13. Pingback: 10 Things I Wish My Doctor Had Told Me About Mild Traumatic Brain Injury (mTBI) - Head Injury Talk News and Rehab | Head Injury Talk News and Rehab

  14. blondieaka says:

    I truly wish all you guys well , itis a great insight as too what can and does happen and how we can help.

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  15. Pingback: 10 Things I Wish My Doctor Had Told Me About Mild Traumatic Brain Injury (mTBI) – Life After A Brain Injury

  16. Sue Anderson says:

    I was grateful to find this information. I have been to many doctor’s and they don’t tell you much of anything unfortunately. I am grateful currently that my husband has been wonderful and is helping. I am also very glad I was urged to retire and will begin Medicare in a few months.

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  17. Jet says:

    On week 3 since my injury and concussion. I’m feeling much better but still have lingering symptoms such as feeling out of it. Even when I’m having a good day I still feel like something is “missing,” like my brain isn’t understanding things how it used to. Haven’t gone back to work yet because I work in a very busy restaurant/bar. Don’t know if I’ll be able to deal with the distractions… Guess we’ll see. It’s been a humbling, scary, and life changing experience so far.

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    • Nancy Pyrro says:

      Jet, do not rush back to that environment. I will give you an example of what happened to me when my husband and I went out to a bar to listen to our friends band. After living with my concussion for over a year, I was going to go. We were sitting with some of our friends and the large table of people behind us were so LOUD and they just kept getting louder and louder. At least that is what I was hearing. My husband and two of my friends weren’t bothered at all. I finally had to ask the waitress to ask them if they could please try to lower their voices a bit. I felt like a fool and like a diva but I was going to have to leave because it was just that bad. They did try to be quiter and one of the guys came over and said he was so sorry! I Said, “You have nothing to be sorry for!” I appreciate you being so kind! I hope you have an easier time! Maybe I will try ear plugs! 😊

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  19. Bullsh1t! J/k. Thanks for sharing this! It’s life-affirming!

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  20. Brenda says:

    Thank you for sharing. I’ve had a hard time getting consistent help and was never advised to rest and stay away from phones/computers/yv’s. Some days I wonder if I will ever get my life back.

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  21. Elizabeth LaPrade says:

    Too bad you had to use inappropriate language to write this otherwise awesome article. I can’t share it now because of that. Please edit your thoughts before you publicize your articles in the future..

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  22. Tante Mimi says:

    Reblogged this on Tante Mimi and commented:
    Wish I had seen this 31/2 years ago…

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  23. Robert Hudson says:

    If The Special Force get some benefits write me Rhudson930msn.com I had a IED Blast in Iraq Camp Victory I take allot pills for Seizures Brain Damage Thanks.

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  24. Kensly Jolene Lawson says:

    I loved this.

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  25. Hell, my doc wont even admit that I have brain trauma, he only concedes that I have whiplash.

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  26. Mike Manzinali says:

    I have been dealing with this for over 3 years. I don’t think mild describes my TBI. I have all the symptoms as described, but I also have black outs. I just pass out when walking or just doing what ever. This is the hardest thing I have ever had to face. I am just now excepting that I have a TBI so maybe with help from my wife I can try to have a life again.

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  27. Michelle says:

    So true, tho I wish it wern’t 😞

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  28. Beth Bogden says:

    On my second in less one year. I thought I was doing things 100%.but needless to say I’m not this one is really having a hold on me. I’m sick of Drs telling me to do this and that and it Hart’s me more than help me.to do dishes is a 3 day event. And it’s just me!

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  29. I wish doctors would instead of rejecting TBI and associated changes because they didn’t have extensive information about certain medical cause/effect scenarios. I got hit by a car and landed on my skull, MRIs show I have ‘HFI’ and I can literally FEEL t, like a slight pressure as if someone rests their hand lightly on my head, though I feel it as if someone s pressing lightly on the frontal/right side of my brain. I have significant memory issues including word retrieval, and occasional stammering to get out the right words/statement, along with piercing headaches in that one localized area. Still I have been told that ‘studies haven’t indicated HFI having any impacts. If a concussion from sports injury or blows to the head or falls can cause TBI, then how can they tell me that landing on my skull onto cement after flying through the air from being struck by a car, doesn’t? SO frustrating because I don’t get the right guidance etc when they don’t think anything is wrong. 😦

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  30. Gail says:

    Love article because I was in denial .
    I had auto Accident 2013 , dx TBI But just couldn’t believe it , since I kept thinking I was alright . But my head was killing me with pain and stupid question s , all I wanted was to lie down . Yet Therapist would ask rate your pain on a scale 1-10 , that drove me nuts . I’d just guess at a number , I want to lay down , my head is killing me uhhh.
    So all in all I look back and I now see how I am / was a head injury and yes I wish I understood BETTER uhhh, focused​ . Oh well . Thanks now I got to except it but it’s not AT ALL WHAT I AM HAPPY ABOUT GRRR , working on it.

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  31. Lori says:

    I understand everything that’s going on in my life, But I can’t get it out Very well. It is hell. Pure hell. I can’t do numbers, My brain is just overload. Any numbers. It looks like it is a foreign language. Almost all of my friends are gone.

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    • Apryl says:

      I can relate. After my strokes, 3 brain surgeries & multiple TIAs, I have very few friends. I have aphasia & apraxia. Speech &
      Neuro therapy for almost a year has helped so much. Most of my old ones are gone but thankfully over time, I’ve gained a couple awesome ones. My entire life has changed since having my strokes, being diagnosed with Moyamoya disease & constantly adjusting to a “new normal” bc of TIAs etc. I’m not the same person I was. & every time I have a “neurological episode” I’m a little different. Thank heavensfor my husband & kiddos, & family. It’s been so hard on them too. Kids are so little. I worked formerly as an ER nurse. Hang in there. It gets better/ you Learn to accept your new normal. My faith & therapy have helped a lot. Hugs & prayers.

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  32. Ashley says:

    After reading this I am a bit saddened to hear so many people have had life changes after their Brian injury. I had a moderate to severe brain injury and didn’t give up when seeking for help. Luckily I went to a concussion specialist in Pittsburgh and can say I am 100% after working with their program. My life only changed temporarily, not long term. And my dr would disagree with all the statements made here. Your social life is not over. You can push thru it because you need to rehab your brain the same way you rehab any injury. It does take time but you can work hard to overwhelm the challenges. Don’t give up hope. There are people out there to help and are well trained in this special field of medicine who can help your life back.

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