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Feeling misunderstood: How do you describe TBI to others?
As the snow falls and you do not want to leave the house, people whom have not experienced a tbi do not understand why you want to stay home.
The wipers are moving, the snow flakes cast reflective images to your eyes, cars are coming closer than when on open streets, the snow makes it very bright.
As you try to navigate through this your vision becomes tunneled, you feel a pulsing in your head which brings on a headache, you now feel dizzy and have a hard time maintaining a straight line, your stomach becomes nauseous and all you now want is to be in a safe place.
When you try to explain how you feel, all you hear is that you are misunderstood, can you please understand that this is not normal for me and my past experiences before my tbi.
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I am receiving rehab therapy for tunnel vision. They consist of edge of sight vision coordination with movement and tasks. They have helped me.
Mike G
I'm totally with you on this one. I hated driving in the Twin Cities before I had TBI. It is much harder for us to concentrate on what we are doing. In the past few weeks. I have been running some errands. Several of those times I needed to drop a letter in the drop box at the post office. I would start thinking about something else and drive right by the post office. Just driving takes a lot of our mental capacity right now. Adding snow and traffic to the mix increases the stress and sensory stimulation to a level that is more than we can process.
Snow should be enjoyed from our Livingroom window or in the yard with our kids building a snowman or siding down a hill.
There are already too many terrible drivers out there. We don't want to be part of that.
Badbenny - the way you describe this experience really takes me right there and gives me a sense of how you must feel. It is so well written. I look forward to your sharing and creating a pictures with words that can really touch people with and without TBI. Creating feelings like that are such a good way to raise awareness.
I’m with you on this. Besides my limitations, snow is distracting, but I also find crossing large intersections stressful. You have to watch for cars running lights, pedestrians crossing whenever they feel like it and then lose your chance at turning because they just keep coming after the light has changed. Then, when driving surface streets, besides looking out for people edging too far out , opening car doors, bicycles not following road rules, you have to look for pedestrians wanting to cross the street but not at a crosswalk.
In the opening post in this discussion thread, @badbenny describes so aptly how difficult it is for people to truly understand brain injury if they haven't experienced it.
How do you describe your injury to others? What helps you feel less misunderstood?
If I’m capable of describing what’s happening, I usually try to explain that TBI causes it. I recently went to hear some music with my brother and his wife. I couldn’t get the words, and the band isn’t a type of band that I like. I found myself having to hide my reactions so I wouldn’t hurt their feelings. I watched people coming and going through the front door. When we left, I saw it was the smoking area. When my bro asked me if I’d liked it, I told the truth and said no. I could tell he was upset, and told him that I was probably overreacting due to my TBI.
I’ve had a couple of episodes of motor mouth lately, and I don’t know if that’s a problem due to my TBI. Any one else?
I’m so unhappy. My brother just sent me 2 emails that prove he doesn’t believe me or the article I sent. He’s always been critical of the way I talk. Which is how a normal person talks who isn’t in group therapy. He wants me to speak “ in sentences, not paragraphs”.
Oh dear, @mugglemary that does sounds like a delicate and complicated family dynamic. It sounds like your brother behaved this way towards you before your injury as well as since the injury, and it doesn't sound like he's going to change any time soon. The only thing that can change is how you react and respond. Easier said than done of course.
While that must be hard for him to swallow that you chose his wife over him to be your family supporter for this study, it was wise of you to choose someone who can support you in a way that is healthy, helpful and supportive. Will you be spending the holidays with your brother and sister-in-law?
I haven't rally had to describe it much but i TEND TO describe physically what happened and most people at least partially understand but I got mine from a severe car accident which makes it easier to understand but my limitations may not be obvious.
Hi @ethancarruthers, welcome to the TBI group. You may wish to jump over to the introductions discussion and get to know the gang and share your story. See here:
- Traumatic Brain Injury: Come introduce yourself https://connect.mayoclinic.org/discussion/traumatic-brain-injury-come-introduce-yourself/
I also noticed that you tried to post a web link with your message. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam. Please allow me to post it for you.
From Ethan:
My friend Ted sent me this article. Very interesting. People think differently on a very basic level I think. even without a brain injury but even more so with one. https://ryanandrewlangdon.wordpress.com/2020/01/28/today-i-learned-that-not-everyone-has-an-internal-monologue-and-it-has-ruined-my-day/
Ethan, what resonated most with you in the article you shared?