This is a post by Mal from Minneapolis, MN, U.S.A. It can also be found at https://injuryjourney.blogspot.com/2019/01/but-you-dont-look-sick.html?m=1 Mal contacted me on Instagram and sent me this post after I posted last week about sharing your story of how brain injury has effected you. Thank you Mal!
You don’t necessarily need to write a post on Concussion Talk, you can share a story, an issue, or a challenge you face on Concussion Talk’s Facebook Twitter or in the comments of YouTube videos or SoundCloud tracks. Or maybe you don’t want to share, you just want to reach out and see if anyone can relate. It’s amazing how many people are just looking for someone else to give them a reason to open up! Provide that reason.
-Mal from Minneapolis
The problem with brain injuries is that they are invisible. The great design of the human body was for the brain to be enclosed and protected by the skull. On paper, that sounds great. But in many cases, like my own, but the brain still can be injured by extreme impact to the head.
Life after my accident has been interesting. It feels like I am in a constant transition of how to perceive the intentions of others and observing how they perceive me. This dynamic is exhausting, but not nearly as exhausting as the process of recovery. Because of this, I often opt out of social events or gatherings.
I used to love the holidays. But, after my accident that all changed. Holidays became a burden. Most of the people who I used to look forward to spending time with, now became unintentional sources of stress and anxiety. A gathering of friends, family, and fun has now been changed to being viewed as a symptom triggering environment. If I make it to the location without the ride there causing distress I then have to deal with the bright lights, the sounds, all the smells after struggling with nausea all week, unclear walking paths, and so much more. Don’t forget the questions and comments. The never ending questions and comments.
I’ve concluded the most insensitive thing one can say is, “you don’t look sick.” In some cases, I’m sure people mean it as a compliment. However, when someone is struggling with their health, this can be a troublesome reminder of just how terrible they are feeling physically. In other cases, people say this with conviction that they are sure you are fabricating the details of your health.
A runner-up to for most insensitive thing to say is, “you just need to get better!”
The questions normally continue
“You aren’t back to work still?”
“You still are going to doctor appointments?”
“You feel sick again today?”
Most of the comments and questions could be responded to with a royal fuck you, however apparently that’s not the proper way to respond to people…
Figuring out social life after an accident is hard. It’s hard to know where to go, if you’ll feel fine when you get there, what to say to people and how to respond when their comments or questions go too far.
Some days going to an event might not give me any symptoms and other days just the sunlight peeking through the curtains causes me to shrivel in pain and pull the bed covers over my head. I attend when I feel like I can handle it physically, mentally and emotionally. There are some days when the physical symptoms aren’t as bad, but after a week of chronic pain, I’m not willing to spend my few pain-free moments with people who will ask annoying, probing questions or in a setting that may induce pain all over again.
The reality is, there is no perfect formula to determine what I can handle and what I can’t. I have good days and bad days.
Here is one thing that I have learned. I do NOT owe anybody ANYTHING.
I don’t owe them a response
I don’t owe them an explanation
I don’t owe them an RSVP to an event I would dread attending
I don’t owe them any guilt if I choose not to attend an event
Even if I don’t look sick