Is there anyone among us (those who have experienced a brain injury) who is not sensitive to what other people say regarding our injury? It is a fact that we are possessive and emotionally connected to our brain injuries; and with good reason. We are understandably sensitive (some would say, hyper sensitive) when others make offhanded comments or broad statements that can cause us to feel defensive, not understood or trivialized.
Although the person making these comments may feel they are just innocent observations, we hear them as assaults on our integrity, our strength and our motivation.
So, how should we respond?
To simplify things, let’s say there are two ways we might respond. We could say nothing and stew inside, or we could attempt to explain ourselves by sputtering out some kind of emotional response; even as our face turns red and we feel like we’re about to burst a blood vessel.
If we take the “high” road and don’t respond, we’re usually left with a mind full of conflicted and angry thoughts. Then we beat ourselves up mercilessly for being this way and for not responding.
If we choose to respond directly to their words, and we try to explain oursaelves, we are choosing to engage in a battle we can’t win.
In order to respond properly, we need to be driven, not by the desire to correct them, or to prove ourselves, but by the need to claim our personal space and retain our dignity. We should not respond directly to what was said because then we are giving validity to their words and making them important. Instead, we should respond to what is behind the words, or what is driving them to say what they said, and that way we avoid having to explain ourselves. Attempting to explain puts us on the defensive, as though we have done something wrong.
We need to understand there is no way the enormity of the effects of a brain injury can be explained in a way that makes sense to anyone, and we are never going to make sense to anyone who is not inclined to take the time to actively listen. Plus, you don’t want to put yourself in the position of having to convince somebody, because right from the beginning you’re putting yourself in a position of weakness, and you risk coming across as a whiner and a person with problems.
I’ll give you an example of something that happened to me. About 10 years ago I was in a cigar bar, and started speaking with a middle-aged woman and her husband. She was asking me all kinds of questions, and somehow the conversation ended up on my brain injury, and the fact that I was on disability. She looked at me and with a smile said something like, “You did a good job.”
To me, she was inferring that I was really okay and had somehow wrangled my way onto disability. Not knowing what else to do, I stood up and left, feeling edgy and discombobulated. As I drove away, I began fuming over what she had said and how I had “let” her drive me away. I decided to go back.
She looked surprised when I opened the door and came in. I walked over to her and said, “That was a pretty stupid thing to say.”
I fully expected to get punched out by her husband, but he surprised me by extending his hand. I shook it and walked out. Although I didn’t directly respond to her statement, I responded to her. In my mind, the situation was resolved and I was at peace.
Let’s look at this from its beginning. I was not going to sit there and argue with her about why I was disabled. I don’t believe in having to justify myself to anyone. Having a brain injury is a truth that stands on its own, and having to prove to someone that I am disabled is beneath me; there is no strength or power in that. Besides, it really didn’t matter what she thought or why she thought it.
The way I responded to her showed how I need to treat myself. Making sure we are being taken care of as human beings starts with us, and self respect begins when we don’t engage in situations like this; even when our emotions are screaming to engage. We are the ones from which the dignity and strength needs to originate, and the ones who need to show we are worthy of respect by how we handle ourselves.
When all is said and done, our words cannot convince anybody of anything. How we act and what we stand for will do all the teaching and talking.
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Thank you for writing your post. I’m currently in a family conflict with my sister, she said “I’m sick in the head, need to be put in an institution, doesn’t like who I’ve become, I’m jealous because she has a better relationship with my children then I ever will” I didn’t respond to her voice message. The words cut deep to my core. I appreciate you writing this, came at a perfect time
Beckt
I’ve been on disability for 4 years now. I’ve actually had people say the following things: “Enjoy your time off!” “It’s like an extended vacation!” (Really?)…also “It must be nice”! (I have responded “You can be off work too, if you get a brain tumour”) Or when I have said “I’m so tired” or “I forget words” – People will say “Me too!” That’s when I ask, “Oh, did you have a brain tumour as well?” I actually had an ex boyfriend say: “Don’t you want to work? What are you going to do, just sit around all day? Maybe if you just tried harder.”
I have heard these things and they are so offensive. “You just sit home and do nothing.”
Despite over coming debilitating depresion, over coming PTSD symptoms and still working out despite triggers, I still work. I am exausted trying to keep up with dr visits, my sons dr.visits, school officials that dont take me seriously. I seek this site out to keep my sanity, my focus and for comfort.
Interesting. I work at a hospital. My own injury was when I was 10. I’ve had some people ask me why I can’t focus on more things simultaneously. It gets slightly frustrating at times.
I hate it when people come up and say “hihowrya” as they run away. My tbi was 2008 and they abandoned me then so they don’t care how i am but fake compassion and for themselves so they can pretend they are human. I try and keep their hand in mine and explain how i am..not sure if that’s the right play?
I really don’t know what the right thing to do is because every situation is different. I think, though, that anything you can do to maintain a relationship is a step in the right direction. One thing that I did learn is this: just as I didn’t want other people to judge me and my actions without knowing my situation, I needed (but wasn’t always) to be careful when I judged others for how I “thought” they felt about me. Good luck. Best,Jeff
I have neighbors who feel the need to bully me. I have a severe phobia of engines now. I get huge migraines from the noise and many believe it is on purpose. I even watched the neighbor walk in front of my house and drop papers. Later when I went out to pick them up, dropped some in the garbage and for some reason held the rest. So shocked to find they were highlighted SS disability info about turning in a person who is faking an injury! Not sure how they even knew. This has been going on for many years and I can’t do anything about it. I used to garden for brain relief and then they began to film that. Even knowing it was okay, it became a stress. How do you stop people like that?
Mary,
I’m very sorry to hear about your situation. I don’t understand what drives others to behave like that and basically, abuse their neighbor, especially when that neighbor deserves understanding. The blog I wrote was about situations when people say things that are dumb or mean but aren’t intended to be. That, obviously, isn’t what is going on in your situation, and to be honest, I wouldn’t know what to do, except check to see if my civil rights are being violated. Following that I might see if I could find a “champion” for my cause; someone who may be in town or state government and could advise you or pursue your case somehow. I hope you are able to find a solution that enables you to live in peace, as you deserve. Best, Jeff
Hi, Mary,
I am so dismayed at the display of ignorance from your neighbors. I am a survivor, too. Is there a BIA support group in your area? Does your state have a chapter of Disability Rights? Does your physician or patient’s advocate know of advocacy groups? Have you inquired with the ACLU in your area? If you find that your civil rights are being violated, your might be able to pursue mediated arbitration with the intent of informing the neighbors of their trespass, or get a restraining order. I hope this information gives you a more clear direction to pursue resources. I wish you all the best, and hope that by this time next year, the problem will be resolved.
Please keep these positive articles coming. I have not been on twitter or I would sign up for your blog.
Thank you for sharing this story. I have tried more than once to explain my TBI and that I am disabled and not able to work. Thank you for letting me know it’s ok I don’t have to explain myself to those who don’t and never will understand.
I also experienced a TBI and I am always explaining myself too.
This summer I walked out of a restaurant with a take out order and a teenage held the door open for me. At that time I lost my balance and looked like I was drunk. Walked back to the car and was thinking I did not want a strange thinking I was a drunk. So went back in and explained to him and his family I had a TBI ! And told him to always wear your helmet biking. My helmet saved my life!