There are a few common phrases John and I hear when we are explaining John’s TBI to others. These solicit varying levels of irritation from us although I think this is rarely perceived. I know that the person saying them is trying to ease an embarrassing situation, trying to make light of it, trying to make John feel better, trying to make themselves feel better, or, maybe at times trying to minimize his injury. I really try to find the goodness in others and hope that most of the time, it’s not meant maliciously. Here are a few:
- “You seem fine to me.”
- “I forget things all the time too.”
- “Welcome to my world.”
- “Well, you look healthy.”
- “Maybe you’re just getting old.”
Pondering on past experiences, I am reminded most readily of interactions with neighbors saying things like this. John will use his forgetfulness of names as a way to try to explain his injury. He does this not to bring the attention to him, as he would much rather not have a brain injury but rather to try to let the neighbor know that he isn’t being rude or un-neighborly but he really doesn’t remember and has a very hard time remembering because of short term memory loss. He may say, upon meeting someone for the first time, especially if we may need to speak with them again, is, “My name is John. It is nice to meet you. Please forgive me if I call you sir/ma’am or if it takes me awhile to learn your name. Because I am brain damaged, I have a hard time remembering names.” This often results in a slightly embarrassed, socially awkward response of, “Well, I forget names all the time too.” Or, “Okay, well, you can call me ‘hey you’ if you want.” Being a witness to this exchange is awkward. I’m left with a feeling of wanting to defend John and wanting to make the person feel better about it.
It is these fleeting yet frequent moments that eat away at the armor. I know they irritate John. They irritate me too. I know people feel compelled to say something, similar to the dreaded phrase, “I’m sorry for your loss.” Or, “I know how you feel.” Why do we, as humans (or maybe it is cultural) feel the need to say something? Silence is okay sometimes or a simple “okay.” Or, “Thank you for telling me.”
It gets tiring feeling like I need to be aware of other people’s emotions too. It gets tiring hearing x phrase, wanting to say something biting back, then quickly realizing they just don’t get it, and just as quickly letting it go. Why must John or I also take on the burden of their emotional care as well as everything else?
There is another layer to this too. John’s injuries are invisible. There are times we vent that it would be easier, socially, if he were missing his leg or something like that, something visible. Something that would make others see that he is injured, that there may be times when he needs accommodations or a break. As I write this, I also am aware that if his injuries were visible, it would probably get just as old to be constantly catered to and assumed help. Sigh…is this all just part of the human condition?
As always, I appreciate comments, questions, feedback.
TBI Spouse (and Others) 
I had client’s who’s own extended family would berate them for “living on disability”. One guy had fallen 35 feet onto concrete and broke almost every bone in his body, as well as sustaining a significant TBI, and his in-laws all accused him of malingering. It’s a mean world out there. I’m glad your husband has you, and you have his back. XOXOXOXO