“But you look fine” | unmasking brain injury

Anyone who has had a brain injury understands what is meant when brain injuries are called “invisible injuries.” You look the same, and everything on the surface seems normal, but underneath everything has changed. Survivors have described this as “feeling like they are wearing a mask”—that what’s on the outside doesn’t always reflect the struggle on the inside. This post explores the impact of having an invisible injury like a brain injury, and what survivors can do to unmask their injury.

Survivors of brain injury may experience symptoms as wide-ranging as headaches and fatigue to disruptions in the processing of language, speech, memory, attention, emotions, and behavior. But the impact is difficult to reconcile with outward appearances as those appearances may not reflect the reality of cognitive or emotional changes going on inside.

Why brain injury is called an “invisible injury”

If someone breaks a leg, their cast and crutches signal something is wrong. But there aren’t any casts or crutches to help someone through brain injury. Symptoms resulting from a brain injury can feel invisible to other people. This can result in a lack of patience or understanding from friends and family, and may cause additional stress in the following ways:

• Friends and family may forget or discount the injury because they can’t see it and may subconsciously take the injury less seriously than necessary.
• Survivors may feel invalidated when those closest to them don’t understand their suffering.
• Survivors may experience a sense that other people have a recovery date in their heads, and when recovery extends beyond that date, friends and family may stop understanding or even caring.
• In the worst case, this disconnect may cause a breakdown in relationships and support systems.

Thoughts from survivors

A few years ago, the popular digital health community, The Mighty, collected thoughts and advice from brain injury survivors in a post entitled, 14 Things People Affected by Traumatic Brain Injury Wish Others Understood. In it, survivors described their feelings about “the mask” they now wear as a “different version” of their former selves:

“The ‘new’ version of myself has very different needs than the old me. I need more rest. I need more time to form thoughts into words. I need more time to complete seemingly simple tasks. And I need my loved ones to realize and be patient with the fact that my emotions are so much harder to manage than they used to be…I miss the old me so much…” —Kendra Partida

“My injury may be invisible, but my life has been turned upside down. I will never be the same again.” —Christina Chalgren

“You have no idea how much effort I have to put into all I do. Things I just did automatically prior to TBI require so much work.” —Amiee Liz

Bringing visibility to brain injury

Although it can be difficult for friends and family to understand what it’s like to live with TBI, there are ways to bring some visibility to this often invisible injury — if you desire to. If you are a survivor, there might be people with whom you don’t wish to share, and there will be other people such as close friends or family members to whom you do want to bring more visibility to some of your challenges. 

If you are a family member or friend of a survivor of TBI, know that a person with brain injury is a person first. Simplistic generalizations or unfair assumptions about their injury should be avoided. Instead, educating yourself on the basics of TBI and patiently listening to the survivor may help you to understand them and be better prepared to offer assistance when they need it. Validating a survivor’s experience can go a long way to making them feel comfortable enough to take off the mask.

If you are a survivor, simply admitting that your emotional well-being isn’t where you deserve for it be—and that is okay… and expected—can be the first step toward a less stressful existence. Finding comfort in the company of others can also be very empowering. There are local support groups throughout the country for TBI survivors, as well as groups on Facebook that can provide a stand-in in the absence of in-person contact.

Using art to educate others on what it’s like to live with brain injury

One such group is using art to help brain injury survivors tell their stories. Called Unmasking Brain Injury, its mission is to “promote awareness of the prevalence of brain injury; to give survivors a voice and the means to educate others of what it’s like to live with a brain injury; to show others that persons living with brain injury are like anyone else, deserving of dignity, respect, compassion and the opportunity to prove their value as citizens in their respective communities.”

Survivors paint masks made of papier-mâché, to show that “there’s a story behind every mask and behind every mask there’s a person—a person that’s been touched by brain injury.” The masks are part of a traveling exhibit which showcases over 900 masks, made by survivors around the world, and available to see on display and online.

If you or your loved one are a brain injury survivor and would like to make a mask to be displayed in the exhibit, you are encouraged to contact Hinds Feet Farm—a North Carolina-based clinic serving survivors of brain injury, and the sponsors of the mask project—and they will work with you directly.

References: http://unmaskingbraininjury.org/