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What Survivors of Brain Injury Want You to Know The members of the New Orleans LHIF Peer Support Group met and discussed what they would like for medical and rehabilitation professionals to know when they are communicating or working with someone who has had a brain injury. Suggestions and comments were made in several areas, including how to treat and talk to the person who has survived a brain injury and how to understand what it feels like to have had life changes by the injury. Survivors of brain injury would like you to know the following:
- We would like to be treated as you would want someone to treat you and someone you loved.
- We would like to be treated with dignity and respect even though we might have problems and you might think we are being difficult sometimes.
- Don't treat us as if we're misfits. We're not stupid.
- Make sure you're giving us good advice and telling us the right way to do something.
- Say, "I don't know" when you don't know the answer to our questions. It might be frustrating to us for you to say that, but it's better than telling us something that might not be true.
- Tell us when improvement will take a long time.
- Realize how much courage it takes to keep going after a brain injury.
- Get to know us as a person and get to know the best way to communicate with us.
- Help us find out what will motivate us. Learn what keeps us from giving up or giving in.
- We value people who give us encouragement. Encourage us to be the best we can be.
- Recognize that there are things we can do well.
- Positive feedback is beneficial to us, but don't patronize us or do it so much that it loses its value.
- Ask us what helps.
- Give us a chance and let us take risks sometimes.
- Tell us you'll do your best to help us get to our best level.
- Tell us what "normal" means to you.
- Try to understand what it feels like to have our lives changed so much by the brain injury. Try to think what it's like to "walk in our shoes."
- Realize that we feel lonely and isolated sometimes.
- Realize that it might be difficult for our old friends to "handle" the injury and that it might be hard for us to make new friends.
- Don't say, "Everybody has trouble remembering or everybody does something like that sometimes" unless you show us you understand that our problems are important and probably not the same as the "usual" problems someone has when they haven't had a brain injury
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