A Guide for Family, Friends, Caregivers, and Strangers
Some people without a brain injury intuitively know what to say. Others don’t. Some people are curious and want to ask about it while others think it’s contagious and want to avoid it at all costs. Even though it may be “natural” to ask about it, you should probably avoid the following statements when speaking with survivors of brain injury:
- You look fine to me.
- You are lazy.
- Your social skills are terrible.
- We talked about this already.
- I do everything for you.
- Let me do that for you!
You look fine to me
The invisible signs of a brain injury – which sometimes include problems with memory, attention, concentration, fatigue, insomnia, pain, depression, anxiety, and other mood challenges – are more difficult to accept than visible disabilities which are evidenced by casts, crutches, walkers, wheelchairs, and oxygen tanks. In some ways a giant scar on the head or neck can “legitimize” a brain injury and make a survivor feel better understood. When people told me I looked fine after my brain surgery, I knew the people meant well but had no clue what I was feeling. You might replace “you look fine to me” with an empathetic question such as “what are you feeling?”
You are lazy
Shortly after my brain surgery, I started sleeping more than 20 hours per day. On days when I had to receive radiation treatments or participate in some sort of therapy I slept a little less, but for almost a year I slept much more often than I was awake. I recall people criticizing me for infrequently walking and solving puzzles. I remember a therapist telling me I was lazy because I did not exercise more. I started believing that I was lazy and doing nothing to facilitate my recovery, but I simply was too tired and too dizzy to do more. You might replace “you are lazy” with a positive question such as “could you do a little more to facilitate your recovery?”
Your social skills are terrible
Months after my surgery, I recall being criticized for looking at a restaurant table rather than the waitress who took my order. I was told that looking down was rude, inconsiderate, and socially unacceptable. I agree with the statement, but it showed no understanding of what I was experiencing or feeling. My neck muscles would not cooperate and my brain had trouble interpreting moving images. I was doing my best not to vomit. Movement made me dizzy. Even before I was criticized, I felt I should not have been at the restaurant. I wanted to sleep. You might replace “your social skills are terrible” with a more positive question such as “is it possible for you to look at the person who is taking your order?”
We talked about this already
I realize many people think their need for repetition implies the recipient was not listening. After a brain injury, it is quite possible a survivor hears a statement or story but can neither understand nor remember it. This is not a sign that the recipient is ignoring, disregarding, or disrespecting the speaker. I remember talking with my mom on the phone and forgetting the topic as soon as I hung up the phone. I didn’t even have time to write notes about the conversation. I remembered a conversation had taken place, but I could not recall any details about the conversation.
I heard stories, which I did write, from many survivors regarding situations when their family members used statements such as “we talked about this already.” Rather than criticize the recipient of forgotten information, try to help them recall the information or story by referring to a time, location, tactile feeling, sound, or emotion associated with the information. I realize it is difficult to remain understanding and helpful, but this is the right thing to do.
I do everything for you
There is no doubt in my mind that some people who experience a life-threatening injury require assistance long after their initial treatment. I realize that the increase in assistance becomes a great strain for some family members, friends, and caregivers. During my very lengthy recovery process, I recall many survivors telling me that their spouses, friends, or caregivers could not handle the stress and left. I also recall stories from survivors who chose to leave their spouses, family members, or caregivers because the other people simply did not understand. Perhaps a little communication rather than frustration is called for in this situation. Even if it is true that one person does everything for another, stating that fact can only lead to additional problems. Perhaps, a more empathetic question is in order such as “what can we do to simplify our lives?”
Let me do that for you
The problem with this statement is it marginalizes the survivor who may be trying to do some things on his or her own. The process from surgery to recovery is not smooth. At some point, survivors who are able will try to do things on their own before they commit to always doing those things on their own. Progress will have some ups and some downs. You might replace “let me do that for you” with an empathetic question such as “may I help you with that?”
What statements from family members, friends, caregivers, and strangers bother you? How do you respond when someone makes a statement that proves the person does not understand you or brain injury? How do you overcome negative statements directed to you? How would you rephrase the six statements so they are less offensive?