I am at a loss. Been active on and off in the Brain Injury community in my area. One of the issues that I find so often across the board is lack of information. Despite there being a bunch of sites online where anyone can learn about TBIs and their affect, so many don't even bother. How can you get friends and family to actually read up about your injury so maybe they can get an idea to better understand? I have not yet found a method beyond ending up yelling at people that if they actually cared about me and accepted me, that they would educate themselves on my disability. Learn that I am not making anything up. That I am the way I am and act how I do because my brain is broken a little. The yelling is in no way helpful to my cause or point. What ways have you managed to find, if any, to encourage loved ones and new friends to understand through learning about TBIs?
Perhaps a video would be more effective? We have a couple on the site.
The biggest problem is that they don’t want to admit there is a problem. Being blind to a problem makes it easier to just say it is a fault and controllable. It is getting them past that point to being receptive to learning anything that is the problem.
Have you tried this one? http://www.tbicommunity.org/resources/publications/famEducManual.pdf
If you can print up a copy and give it to them, with the words "It would mean so much to me if you would read this," perhaps they would learn something new, Sadz.
I will look that over more when have the luxury time. My injury sadly is not recent. I have had mine most of my life. There are no signs beyond my behavior and mental acuity...
You can lead the ignorant to knowledge but you can't make them learn.
It has helped with some of my friends and family closest to me to come to the doctor with me. I had my husband come and sit in the doctor's appointments with me a few times to observe and also my best friend. It really brought home the point to them that I'm really not kidding and they've shaped up since.
For others I've sent videos and articles.
Others...well, I tried. If they refused to learn and refused to treat me right, then I unceremoniously cut them out of my life. Dealing with this alone is way better and more healthy than dealing with it while being surrounded selfish and shallow people.
I agree on that note. I can't get in to see anymore drs cause they have all refused to give me my ICD9 coding. That is a fight I have been persuing as best I can while being a signle mom trying to make it on my own. One can only find resources. Right now I am just debating on how best to even start the conversation without it being acusing of them.
One site that I find very helpful is brainline.org. Also, I admit that I am not an expert, but I still consider myself knowledgeable in how health can improve brain injuries, in which I have one, because I took an online course in human nutrition. If anyone wants some health advice, I can help.
I write to them using Facebook but you could email them or whatever they’re going to read, then it’s easy to copy and paste the message to share too many people at once or to group message people at the same times, explaining your difficulties do to your brain injury and te. ll you need help with certain things sometimes. This has really helped me. Like I mentioned how if I come into a room and people are talking very loud or the TV is very loud how can Shock Me and leave me unable to socialize and needing to cradle Myself Away in a quiet area for hours to recover. Or how I need people to not use a flash on camera right next to me because flashing lights almost give me a seizure. And I’ve also asked them to help me avoid gluten and alcohol and caffeine because when I have those things I need a very long time to recover they don’t make me feel good. But the more tired my brain gets the more reliable I am to succumb to temptation so they’re all supportive of me now and a few people I’ve had to send a few messages before I saw a difference but just believe in yourself what you say is valuable and your own health and well-being and happiness is valuable too
Anyone try this? Please comment how it went. For me it went very well! For Xmas I got stone necklaces n plaid shirt n Jean jacket coat n Virtual Reality goggles n most of all gift of family helping my special needs; Gramma warning me before camera flash, everyone trying to be quieter, helping me get food or drink when needed n tired, talking w me one on one slowly quietly thanks family, for learning my special needs (w help of FB group message telling them my needs hehe, thx cuzzys)
N look up Leila RainbowTree n follow me on fb to see my life dealing w TBI a bit. Might help ya feel understood sometimes or some ideas helpful! Maybe
Hey Sadz, its been a while. I get what your saying, other than saying “I have a traumatic brain injury, so deal with it,” its tough for us with this type of setback to approach others who may not deal with it. I myself suffer from a right coordinate injury, as in my early years of recovery I was a time bomb, it was crazy! Fortunately there was a benefit to this because people could clearly notice that something was happening to me. Some though have sort of a blinded view of it, as for example, an ex of mine had a belief that all of these effects from the disability were something I can get past, haha sure… All the same, for the past couple years I have not really explained to people what happened (accident, and first years of recovery), but rather let them catch on themselves to the fact that there is something mentally off about me and explain it to them if necessary.
Hope this was helpful
Have any of you guys ever felt like a second-class citizen? Because people have such trouble doing things like turning the volume down when you go into a cafe because their music, even though it’s live, it’s just way louder than it needs to be for everyone to enjoy it and it’s definitely too loud for me with a brain injury to enjoy it? Last week I had to raise quite a hurra to get people to turn the volume down for me even though most of them were my friends and I had made a whole Facebook page to help them out. And they wanted to tell me to go home because it was too loud for me. I finally talked him into turning it down for me and we all enjoyed ourselves we were dancing and smiling and chatting and having a good time and it was worth it… but I’m a little uneasy about going to my one thing that I do socially a week if even… A music jam session you can drum along or sing along or whatever because I’m really afraid I’m going to have to ask the musician to turn his amp down a little bit and I am tired this week. But I’m going to go for it because sometimes risk creates rewards and I do want to socialize.
I just had the best night of my life it was so worth it to venture going to the Cafe to enjoy the music and to sing and dance and it went beautifully they turned it down for me and then over time I just acclimate to the sound level better too plus I was wearing high-quality ear plugs it all worked out. Plus the more positive I got by meeting friendly new people and by seeing old friends the easier it got too so it’s so worth it:sparkling_heart:
And lately I’ve been really sticking to a three small square meals a day diet with all the food groups in it, but while I was singing I’d gotten just so so tired, and I had some high-quality root beer and that is a good cheat once in a while to Bubble some sugar up to your brain that was all I needed it kept me going the last hour or two? Half an hour? I don’t guage time well haha and I was able to walk home slow and careful anything’s possible just given time and patience take it slow and you will heal and heal