10 Things People with a Brain Injury Would Like to Hear...

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Follow through with your offers of help.  So many times, people say "anytime you need anything, let me know, I will be there to do whatever you need".  Yet, whenever you need them, everyone disappears. 

So true isn't it ?
Once you experience a TBI, it's very easy but unfortunate to see who these so called friends are.

I believe you and that day to day struggles are real. I wish family would not get defensive and take it personally. Some days im worried about the future because at this point I dont know what to do. Its like I lost the ability to plan and my past jobs are so spuratic that nothing makes much sense. Im 25 years out and wish I had the connectivity and figuring things out again. Its hard to explain.

I am an advocate for people with brain injuries. I let them take their time when trying to do a task.  They feel so wonderful when a simple goal can be reached. Be patient ,kind and understanding. Take them on outings, the store,a walk, a meal, helping clean their house or something they enjoy.  Most  of all be patient and kind !Do not judge,make fun of or put anyone to shame. Remember  they are people too. Its never a burden to help a person with a TBI, its a joy to help friends!  Aloha

Can you tell me how you feel?

I am coming up on 15 years, this August and my FAVORITE comment has always been:  "so, are you completely recovered?"  If they only knew the journey that lasts a lifetime....

I have suffered from TBI since 2007 & am still dealing w/memory issues, since of direction & depression. I Ann able 2 return to work in a different career as before the TBI. I'm having problems getting support from my family financially due to me being on disability & not having money to purchase the vehicle to perform this job. Being told no so many times has made me stop wanting to try anymore.

I'm in my 10th year adjusting to a TBI, PTSD and constant chronic pain from extensive back and neck injuries from a vehicle collision. Having extended family and friends not believe my injuries and challenges are real is like salt in a wound. When I'm in sweat-soaked sheets fighting chills, sleeping by the toilet, having nerve ablations, or standing lost in Lowes...I chuckle to myself "Yup, I'm faking this SH@#!" I'm walking by faith, and not by sight. Heaven's a Pain-Free Zone...ya just can't get there on your own terms. Never quit!

It will be 18 years this July that I have survived TBI. It does not go away, but life has gotten better. Still, I take back to lessons I learned when i was recovering, to hold ground to who i am and grow from that.

I was in a car, stopped at a cross walk, rear ended by a truck. "Only" injury was a delayed onset TBI (30 min. maybe?). Why didn't you go to the hospital in the Ambulance? Well, because they asked if I wanted to go. How dumb is that? Anyway, lost my home, lost my business and lost me. Would have liked to know there was support available from BIA and 'net.

My son has TBI! It is very hard on individuals who have this problem! It is hard on the family as well! The ups and downs ... not knowing when they are going to explode next! God Bless you all!

I get depressed every time I'm done working. I have a tramantic brain injury. Of short term memory problem. People at work talk on the phone to people about me all the time. And to the guests. I work as a housekeeper at a hotel.

I wish I'd heard, "It's OK if you can't do that right now."  With my family and at work, there was no space to say I wasn't up for something right then without getting blamed or told I needed to do it anyway.

I wish I'd heard, "We're really glad you're here.  How can we help you make this work?"  I was often criticized, told I couldn't participate, or made to feel like I shouldn't have come.

I wish friends and family had accepted the symptoms I was describing, instead of saying I looked fine and implying it was just something I was making up, or that I was overreacting.  TBI symptoms are described by doctors as being "sporadic" and "diffuse," so it is actually normal for someone with a TBI to have trouble with something they had been able to handle yesterday, or to report a collection of odd symptoms that don't seem to have any relationship to each other.  

I wish people had listened and responded instead of nodding, saying, "Oh, uh-huh" and going on with what they were saying or doing without really processing that I'd just said I was having trouble.  

I love you today and tomorrow!

~~9. The you that is YOU hasn't changed. You just have a harder time thinking than you used to.
– Fred

I have amnesia, I lost my identity and almost all memories, and went through hell for 5 years after the injury. I recently (6 months) began recovering memories as well as the ability to imagine, and I wish there was one person in my life who would have treated me like the phrase you wrote. I suppose people did try to treat me like that, but they really just didn't know me.

I had a injury, my X boyfriend hit me in the head 7 times with a fireman flash light, in the back on top where Yr memory is affected, I went to the doctor, memory loss ,throw up head aches ,dizzy ness vertical ,my mind is to fast to connect for what I'm doing at the time. Inpatient, irrationally when I get irritated., loss of family and frirnds

Honestly...there's not one thing that can be said that helps or makes a TBI survivor or caregiver feel better because what one TBI survivor struggles with will not be the same across the board. However, what DOES help everyone, I believe, is this: My advice to anyone a TBI survivor or caregiver has reached out to: PLEASE do not pretend to understand and do not try to give advice according to how someone not struggling with TBI would need. TBI is complex...extremely complex. Just listen and be sensitive to their needs. Do they need to be alone? Leave them alone. Do they need a shoukder? Give it to them. Do they need distraction? Be a distraction. Be their friend. That is all

My son was extremely intelligent and prided himself with his above average problem solving ability. After his TBI, he lost all executive skills.we asked him to separate cans and vegetables that were mixed together in a box. He couldn't do it. He knew the difference between them but has no organizational skills to know how to put fruits on one side and vegetables on the other. He says it is like someone flips a switch and turns his brain off. He calls himself retarded. That kills me. I told him that all that intelligence is still there, he just lost the ability to express it. I tried to think how I could explain it in his terms. I told him it is the result of a physical injury. You had a serious car accident that you weren't expected to survive. You didn't break your arm or leg, you broke your brain! The most difficult thing a TBI person has to deal with is knowing that he will never be the person he was before the trauma. After hearing other people's stories I know that my son isn't the I only one who lost the people who were supposed to be his best friends. It hurts me so much to hear that they just want to remember him the way he was! I just want to shake them and tell to celebrate the fact that he beat all odds and survived... He's different... Not dead!!!!!

Acceptance is the key,have to accept the person you once were has left the building, and you just have to get on with 'normal' things in the only way you can now, 'uniquely' Don't be afraid to be different, who wants to be the same as everyone else. T.B.I survivor since 1992 Sharee Seymour

Here is a few I wish I heard. My reasons are beside them

I believe you have issues I cannot see...... I am tired of explaining my TBI's and what they do to me.

If you want help just ask...... Almost as bad as no help, is being suffocated with help. We need to push our limitations but as always safely. Missing a few teeth by pushing too far.

I know your not stupid or drunk..... We all had that one, your drunk/stupid etc

Well done, that was tough for you........... Bit of praise goes a long way especially in the early days

You have changed but you are still you, just a bit different than you were......... The fear of losing yourself is a base fear non survivors never understand. Just once it would have been nice to hear the truth. Better than your the same. WE KNOW WE ARE NOT, lying about it makes it worse.

What do you want to do and how can I help......... This is a hard one as you hear it said but it is not what is meant.

There are loads more but they would be a start.

I don't understand as I have never had a brain injury, but I promise to be here by your side as you take things one day at a time. You are not alone. Carole Billingham

I can't say I understand all of the struggles. But am an empathetic person. I was in a bicycle vs car collision at 14. A small fracture to my head. I remember the severe blinding headaches lasting 2 years. The memory problems and anger just cropping up out of nowhere. I am 57 now with an eventful life. I have been a caregiver 3 times so far and love and patience is the best I could ever do. Happiness comes in small moments not always big events. Grab onto them. And a hug is always appropriate just not always accepted.

I like many of you, have not heard the words we need to hear to help make our day. I haven't heard it from my brother. My mom really can't understand. My best friend compares her headaches with my TBI.  No one reads simple things about TBI's that I've given them. I now have 2 TBI's. I'm so lost and hurt. I feel no one really cares. It's great when the Vets get what they need, but how about the rest of us!

I have TBI.....am 28 have an 8 year old son,I feel as though HE HAS MORE FREEDOM THAN ME :( This website is helping me understand things much better

I realize you have not been affected intellectually just because you have trouble with attention issues, memory, and in other cognitive areas that control or assist with your intelligence. I also understand that I may not relate to the way you do things because they are completely invisible to me and I can only assume your motivations from what I see. However, since I am an intelligent person and have learned from research the effects of traumatic brain injury ( short and LONG TERM) I realize that you are doing your best and I support you!!!! I support you regardless because you are my friend/spouse/other and I know people are motivated to do their best and achieve something with their lives as a rule and because I care about you!

I don't know.  I wish that people would talk to me.  That they would accept that im someone else.  Im so lonely but yet I cannot communicate well enough to move on.  I was a powerful self motivated person bofore but now im weak and need encouragement but get none.  Im laughed at and ignored. I just need someone to give me hope. Someone to love me.

I still want to be your friend even though it will be different and you may not ever "get better", I appreciate the person you are inside enough to weather through this rough patch and not walk out when it gets hard.

When I am lost in my car and cannot find my where I'm going (in spite of having GPS) or cannot remember which way I turned at the last intersection,  I am frightened.  Deep breathing saves me from an instant anxiety attack.  This inability to lay down a retraceable path still interferes with my living comfortably with my disability.  Still I am grateful that I'm alive every day, and  that I can drive.  I send love and energy to both the TBI's and their caregivers out there.

The points made above are excellent.  Too bad after 13 years after having suffered a brain tumor surgically removed and the resultant TBI issues, I never heard any of them.

"What happened to me inspired me to go into this field and do the job I do every day, to help people like you. To let you see it's not over and you can get back to where you were! I wouldn't change a thing that happened to me." -Said by me (Kasey) to my patients. I'm an 11yr TBI survivor and An Occupational Therapy Assistant.
I am your friend, and i trust you.
Just seeing you smile is fantastic for me
"I will gladly help you in whatever way I can that is within my means".....(my severe TBI was the result of an uninsured motorist speeding thru a red light....i got no compensation.)
ACCEPT THE HELP-when given to you!-that was HARD for ME to "accept" since I wanted/am a "very independent" person!:)-don't "think" more about "things" than you should-write you "a reminder post it note"-I have "post-it" notes EVERYWHERE in our house!-lol-if your reading something-HIGHLIGHT IT or "follow along" with your finger and BOOKMARK IT!(helps ME a lot)-smiles-and "tell" your caregivers "THANK YOU" verbally!....and SOMETIMES A HUG IS "APPROPRIATE" OR A "HAND SHAKE"-they do a lot too!-Marcia, a TBI "survivor"
"I understand love about your hurt brain and it doesn't matter to me, I love you just the same"
"One cannot smell flowers from a galloping horse."....Chinese proverb....
I Love you just the way you are!
Have a good sleep, I'll see you/ talk to you when you get up.
If only people understood each injury is unique.....not to google and say yours doesn't match up perfectly therefore yours is not a "true" brain injury. It effects relationships, memories, likes, dislikes, some things you have experienced are New again. You can see things differently like the flicker of a leaf on a tree is magnified....you can hear and see each movement with such clarity. There is not a timeline on healing so do Not hold me accountable to whatever you have read....again each injury is unique.
Its not so much what is. said as a mom of a child with brain injury, it really bugs me when people treat my child as non human, she just wants to be accepted justlike everyone else.
There are times I "waffle" with my decision. Trying to figure out what is BEST. Just give me time, I try so hard! Sometimes I don't know how to express my needs or what I want, just stay with me, don't hurry me, & DON'T berate me. Thank you for letting me vent. Still dealing with limitations 36 years post TBI (1976) Bobbie
I should not have to be the one to that has to educate you on what it is like to live a day with my chronic and life long condition of brain injury, but I will try my best to! As I am taking it upon myself to continually learn & accept my entire life! Caring and simple compassion go a lot farther in helping me to understand what I am up against and dealing with on a daily basis, going moment by moment! Judgement, ridicule, guilt and shame are reckless tactics to control by individuals who really have no control in their lives! So they think by controlling your broken world with their numerous convictions and judgement are what makes the world go round and makes themselves feel better! When truth be told that is the farthest from the truth! It sucks to be openly honest at times, but this is our reality now! I still have support from wherever I can receive it and by those who accept and do not judge intentionally!
I will not tell you that I have already answered that question. I will just answer you again.
You are not damaged goods. You are still worthy of love and I still love you. You're not stupid and I am sorry for making you feel that way.
A friend who had a TBI told me to \\\'be easy on myself...be very patient with myself...\\\' It helped so much.
I don't understand your injuries or how they affect you and your family, but I believe in you enough to know they are real.
We are your family and we'll always be here for you. You're my son and I would love to visit you weekly and bring you dinner so you have one day of not worrying about it. Is their anything we can do to help you at all?