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Why I Made My Invisible Disability More Visible

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In my senior year of high school, I wrote an assignment on traumatic brain injury for a Writer’s Craft class.  I included my personal experience of having a traumatic brain injury and was 3 years post-injury at the time. In the assignment, I mentioned my tattoo — a green brain injury awareness ribbon. My teacher asked me why I chose to make my invisible disability visible in the form of a tattoo. I didn’t have an answer for her; I had made the decision to get the tattoo after returning to school full time, but that didn’t answer her question. Six years and a few more concussions later, I finally have an answer.

I made my invisible disability visible because I’m comfortable with and desire a certain level of visibility. I have always been forthcoming with information about my brain injury in a number of ways. All of my friends are well aware, and it’s something I share early on when I meet new people. I have written and been interviewed about my experience with traumatic brain injury and have sat on panels for presentations for health care professionals. I’m very open about how my brain injury has impacted my life, and speak with pride about the improvements I have experienced.

The reasons and motives for discussing my brain injury so openly vary depending on the context. I tend to share information about my brain injury early on when meeting new people because it’s hard to explain certain aspects of life that come up in casual conversation without mentioning the brain injury. For example, I took an extra year in high school, I don’t drive and an amusement park is a terrible date idea for someone with a TBI. Sometimes I have to share for safety reasons; my workplace and the people I spend time with need to know how dangerous it is for me to be hit in the head again.

One of my motives for sharing is to spread brain injury awareness within my personal life and beyond. I want my friends to know me as well as understand my bad days, and I want there to be an improvement in services for all people with brain injuries.  There are times when I share my brain injury story simply because it’s part of my life.

What initially drove me to start speaking about my brain injury was its invisibility. The friends I had in high school didn’t understand my injury because they couldn’t see it. On the outside, I look completely fine and you would never know I have a disability unless I pointed it out. I pass as able-bodied very easily, which made it harder for people to understand why I had accommodations in school. When you have a broken bone, there is a cast and people get it; a brain injury is a serious injury that can only be identified by words. Words are easier to doubt than a cast, but they’re better than nothing.

A few months ago, I had another concussion after hitting my head on a desk. During this time, I realized there are a lot of ways my brain injury is visible.  My brain injury becomes visible when my speech slurs or my brain cannot retrieve a word, which results in a lot of stuttering.  It becomes visible when I look extremely tired with dark circles under my eyes and I’m in bed at 7 pm on a Friday. It’s visible when I’m so out of it after a hit to the head that I cannot keep track of conversations and cry from being overwhelmed when trying to leave my house. It’s visible when I talk too much, interrupt, cannot multi-task and have shaky hands.

All of the ways my brain injury becomes visible are out of my control; this makes me extremely uncomfortable and embarrassed. When my brain betrays me in these ways, I become the girl with the brain injury. I’m usually proud to be the girl with the brain injury, but realize it’s only when my brain injury is visible on my terms. There are certain levels of visibility that I’m comfortable with and desire, but only within my control. I prefer to share my story through my words, not through people getting to see firsthand what my brain injury is capable of doing to me.

I still can’t decide which I prefer; the visibility or invisibility — but I love my tattoo.

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Originally published: December 20, 2017
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