“You look great! You must be fully recovered!”
“You look great! You must be feeling good!”
I have come to loathe these phrases. I know they are usually said with good intentions; however, they are most often so far from the actual truth that it is frustrating to hear.
It’s exhausting to give the correct answer, so most of the time I simply reply, “Thanks, I’m still recovering,” to which I get strange sideway glances. It’s as if the fact that I am walking and talking means I can’t possibly still be recovering from a traumatic brain injury (TBI).
Invisible injuries are often dismissed by those who don’t truly understand. If we’re seen smiling and laughing, people deem that we are fine, yet there is a hell inside our heads that is holding us back from actually being able to enjoy whatever it is that we are doing. It takes every ounce of energy I have left to put on that smile and give a laugh, all while hoping a headache doesn’t completely take me out before it’s an acceptable time for me to leave.
Once my physical injuries healed (which were also invisible), I was able to be a bit more active in my daily life, although I still suffered from intense fatigue, headaches, brain fog, balance issues, short-term memory loss, aphasia, and vision problems.
Casey from Kentucky stated, “Living with any invisible injury is difficult, but when that injury affects the organ that controls your entire body, it is almost impossible for others to understand. Emotions, pain, energy, vision, and even the ability to think clearly have become a daily struggle. Hearing ‘you look fine’ has become the norm. Time can sometimes heal, but often it just allows those around you to forget.”
Because no one can see inside my brain, I realize that it is hard for someone outside of the TBI community to conceptualize what I am going through. But instead of making assumptions of how I am doing, based on the fact that I am out and about, ask me how I am doing. “How are you feeling today?” or “How is the recovery going?” would be appreciated. I may answer with a simple, “Oh, pretty good,” even though I am feeling miserable, but I am thankful that you understand I am still recovering, even two-plus years later.
In the beginning, I was very sad at the loss of so many friends who I thought would be there for me. I don’t know if they thought I was faking, seeking attention, exaggerating, or what. It hurt me in profound ways, yet, I am thankful for them. Their attitudes towards me are what originally provoked me to write about my journey, which ultimately led me to finding my “Tribe” and a whole new circle of friends and people who care deeply about me.
I commonly hear survivors talk about loss of friendships as one of the side effects of TBI. Outsiders simply don’t understand what we are going through, and that leaves us feeling hurt, isolated, and very alone. Not everyone has a caregiver or someone close to help that person get through this debilitating injury.
Jan from Arizona has been a caregiver to her partner, Stacy, for the past 15 years after a horrific and bizarre head-on horse-racing incident. She commented, “We have lost the majority of our friends in the past 15 years since Stacy’s traumatic brain injury due to the life changes, setbacks, and differences that we deal with on a daily basis. Most people do not understand what we go through each day, but I do not blame any of them. Everyone—I mean everyone—has ‘stuff’ to deal with. Life gives all of us challenges, but we do not get to choose which ones we receive and attempt to overcome. We have been through so much, but it indefinitely is not over yet.”
It’s certainly true that everyone has their own “stuff” that they are dealing with. Everyone’s individual battle is the one that matters most to them—and rightfully so. There is more than enough compassion to go around, so let’s all try to be a bit more compassionate to one another, even if we don’t fully understand that person’s invisible injury, or whatever it is that they are going through at the time. Friendships may ebb and flow, but a simple “thinking of you” text, email, call, or card can go a LONG way in boosting someone’s morale and helping in her recovery.
Amy Zellmer is an award-winning author, speaker, and advocate of traumatic brain injury (TBI). She is a frequent contributor to the Huffington Post, and has also created a private Facebook group for survivors and also produces a podcast series. She sits on the Brain Injury Association of America’s Ambassador Council (BIAAAC) and is involved with the Minnesota Brain Injury Alliance. She travels the country with her Yorkie, Pixxie, to help raise awareness about this silent and invisible injury that affects over 2.5 million Americans each year.
In November, 2015 she released her first book, “Life With a Traumatic Brain Injury: Finding the Road Back to Normal” which received a silver award at the Midwest Book Awards in May, 2016.
for more information: www.facesoftbi.com