Traumatic brain injury (TBI) is a major cause of death and disability in the United States, contributing to about 30 percent of all injury deaths, according to The Center for Disease Control and Prevention. People who survive a TBI can face a wide range of side effects, ranging from ones that may last a few days to lifelong disabilities.
The Mighty worked with the Traumatic Brain Injury Support Facebook page to ask people affected by TBI what they wish others understood about their conditions.
This is what they had to say:
1. “People need to learn to not judge you because of it. It makes it more difficult for us to keep moving on in the right direction.” — Erin Fox
2. “I am still capable of doing lots of things. I have worked really, really hard to overcome my injury and although I now suffer from epilepsy and use a seizure alert dog, I am still the smart, capable, funny uncommonly kind person I’ve always been. Stop telling me I can’t and start helping me reach my next goal.” — Kat Mac Kenzie
3. “Remembering things is difficult. I’m not being lazy by only working a few hours a day or needing days off during a busy time — I just need more rest to function than you do… Changes take time for me to adjust to. What works for one person doesn’t always work for me.” — Sara Hill
4. “I want nothing more than to be ‘better’ and not be judged like I’m a deadbeat for not being what I once was.” — Elizabeth Keene Alton
5. “The ‘new’ version of myself has very different needs than the old me. I need more rest. I need more time to form thoughts into words. I need more time to complete seemingly simple tasks. And I need my loved ones to realize and be patient with the fact that my emotions are so much harder to manage than they used to be. I still love my partner and my kids, maybe even more than ever, but I also need more solitude than I’ve ever needed before. I need compassion and cooperation. I need love and comfort. I miss the old me so so much… Raising awareness about this issue will be the first thing on my plate, once I can manage to claw my way back to some normalcy… For now, I need my sense of humor more than ever. Because it’s laugh and learn or cry and die, baby. And crying hurts the head.” — Kendra Partida
6. “My injury may be invisible, but my life has been turned upside down. I will never be the same again.” — Christina Chalgren
7. “Never assume a person who has difficulty communicating has nothing to say. They may have plenty to say. They just say things a little differently. Never assume their brain doesn’t work, because it does. It just may work a little differently than ours.” — Stacy Sekinger
8. “Be patient with us as we learn to be patient with ourselves.” — Cindy Williams
9. “I need help. To plan a day. A doctors appointment. I need someone to go with me. I need help to shop, cook and clean. I need help to find my limits and rest enough, but I also need gentle support to take small walks and do gentle 2-minute yoga so my body doesn’t stop working altogether. I need friends who come by and say ‘Hi.’ I need hugs. I need to vent and help to look for any sort of silver linings so I don’t go mad. I need new hobbies that are gentle to get my mind off my problems ,and I need help to get started. I need help to help myself.” — Catriona Thomsen
10. “My brain takes different paths to understanding and explaining. It’s not a straight road, but one with detours.” — Keli Hanks
11. “You have no idea how much effort I have to put into all I do. Things I just did automatically prior to TBI require so much work. Everyone goes through moments in their lives which are difficult. For most there is an end in sight, a goal to work towards or for. I have no idea when my difficulties are going to lessen or even if they will. Some days having no ‘finish line’ sucks.” — Amiee Liz
12. “No we’re not the same person we used to be. We’re alive. But we can create a new journey, learn old stuff and new stuff. The strength and determination it takes to learn, try, try, try again, fall down and get back up is painstaking, but worth it.” — Julia Hewitt
13. “I live by my systems. I have to have a schedule or I am lost. Don’t freak on me if I get clingy in a new environment. Things that are easy for you are challenging for me. Also, just because I look OK doesn’t mean anything. I have worked for years to get where I am now.” — Nancy Davis
14. “As much as I wish things would go back to normal for her, this is our new normal and I’m OK with that.” — Emily Reigle
*Answers have been edited and shortened.