Confessions of a Concussed Cyclist: What not to say to someone with a TBI!

August 29, 2019

Over the past five years people have made certain comments to me, that I am sure are meant to be helpful, when in reality they are just the opposite for me.  Now I can’t speak for every person with a brain injury but for myself these certain comments really rub me the wrong way and unfortunately over the past week I’ve heard every single one of them multiple times.  

“It could be worse!” This was first said to me the day after I was hit.  I have known from the second I was hit that it could be worse and lest I forget I was reminded often by first responders, ER doctors, neurologists, TBI support staff, lawyers, and anyone else that read the police report that I should not have survived this.  There is no logical explanation why I walked away. I know I could have…should have died. I know it could be worse, but I don’t need to be reminded of that fact. There is nothing helpful about hearing those four words and frankly, when you say it, it feels like you are diminishing the true injury I did receive. 

“Be strong!”  I am strong every single day; I need to be! Life with a brain injury is not for the weak.  Every minute of every day requires me to dig deep to a strength I never knew I possessed. When you tell me to be strong it sounds to me like you think I’m weak and I need to buck up.  I never ask for help and I rarely complain about how I’m feeling. On the few occasions that I do I’m always told to be strong. Why can’t I be weak for a minute? Why can’t I break-down and cry then pick myself back up?  

“Have faith/hope!” Have faith/hope in what?  My hope has been raised multiple times only to be shot down again.  I am not holding out hope for a cure I know does not exist. I have come to accept that my brain is injured.  I may not like it, but I have accepted it. Do I get frustrated that there isn’t more research regarding brain injuries or more treatments?  Absolutely! But can’t I get frustrated once in a while? 

“Be patient!” & “Give it time!” When there is no cure and when a brain injury is life-long, isn’t it okay to feel hopeless once in a while?  Isn’t it okay to be tired of the medical fight, always looking for support and treatments? No amount of time will magically heal my brain. Symptoms may improve over time but it’s a slow process with no guarantee of what will get better and when. 

I get it.  I get it’s hard to know what to say, especially when you cannot see the injury.  I have written forty Confessions (this one makes 41) and I’ve tried hard to explain it but I can still only expose the tip of the iceberg as it’s impossible to put it all into words.   I only ask that you think to yourself, “is this comment helpful?” Is it helpful if I say to Jen, “it could be worse!”? Would you tell someone that was recently paralyzed to “be strong”?  Would you tell a person going through chemo “it could be worse”? Just because you cannot see it does not mean this brain injury is any less real.