Editor’s Note: Emma’s name has been changed to protect her identity.
Her family affectionately called her the little vampire.
She took a semester off from college and left her room only at night, never caught without ear plugs and blackout goggles.
“Even the sound of the birds chirping was too loud,” said Emma. “I couldn’t hold a conversation for more than two minutes because that part of my brain would fatigue.”
Emma talks slowly as she recalls the darkest time of her recovery: the three months immediately following her fifth concussion during her sophomore year, the concussion that ultimately ended her soccer career and her time on the women’s soccer team at UNC-Chapel Hill.
The months of physical therapy included physical and ocular activities five times a day. The activities would exhaust her, and afterward she would curl up in a ball and then stretch for an hour to relax. By the time the pain subsided, it was time to do the exercises again.
She describes the pain like a dagger in her head, and the sound was like sizzling bacon under a microphone. But the worst part was the emotional toll. The part of her brain that controls both movement and emotion was affected, so the two would often overlap.
“If I walked too long, I would break down crying.”
She recalls how drastically her life changed — going from a star college athlete and thriving student to someone with severe chronic pain.
Soon after her fifth concussion, she decided enough was enough. She officially retired from soccer and all other contact sports.
“I realized, OK, I have to stop,” she said. This is my brain, I’m not going to mess with it. If it were a knee, I could get a knee replacement, but you can’t replace the brain.”
Life is better now. Aside from the occasional migraine and her inability to play contact sports, Emma plans to finish her degree. She’s now a senior studying environmental studies at UNC-CH: something she wasn’t sure was possible a year and a half ago. She’s proud of her progress, yet she isn’t disclosing her name.
“I’m very interested in being supportive of people who have had (concussions), but I don’t want to have it as a label,” she said.
She doesn’t want future employers to Google her name and question her abilities because of her multiple brain injuries. Having her past impede her opportunity in the workplace doesn’t seem fair, she said.
“It’s already taken away my ability to play the sport that I love, I don’t want it to take away other future opportunities,” she said.
Those who’ve had concussions can feel stigmatized, and that, Dr. Johna Register-Mihalik said, is a concept many don’t understand. Register-Mihalik is an assistant professor in the UNC-CH department of exercise and sport science. In addition to her role in the Matthew Gfeller Sport-Related Traumatic Brain Injury Research Center, she serves as a research scientist with the Injury Prevention Research Center.
According to her, the fear of feeling stigmatized can stem from different sources: fear of letting down the team, fear of letting yourself down and fear of letting down the sport. It’s more complicated than many other sport-related injuries, she said.
She said these fears are relatively common, and it often plays into athletes deciding not to report concussions.
UNC-CH junior Nicole Cordero’s athletic career ended in high school because of a concussion, and now she dreams of becoming an orthopedic surgeon. An exercise and sports science major at UNC-CH, she said her experiences with injuries as an athlete has inspired her to enter the medical field. In high school, Cordero was a softball and soccer player and considered playing softball at UNC-CH. But after multiple concussions, her neurologist told her she didn’t have a choice: contact sports were out of the picture.
In a warm-up before a game her senior year of high school, Cordero’s coach hit a ball to her, and it slammed right into her temple. She said the dizziness was unlike anything she had felt before — her first concussion.
She said her coach had never given a lecture about concussions before, and the danger was rarely talked about. Immediately after she was hit, he looked into her eyes and completed a few basic tests, but ultimately she was sent back into the game.
They lost the game, and because of that, the next day’s practice was especially hard. Cordero said she just couldn’t handle the dizziness, and she threw up in the middle of practice.
“That’s when I thought maybe I should talk to someone, but had that not have happened, I probably would have just kept playing,” she said.
Cordero said she thinks there’s a stigma surrounding concussions, especially among elite players. She remembers her high school’s best pitcher experiencing a concussion that same year. She didn’t tell anyone until after the season was over. She was their star pitcher, and if she had been out, they would have had a losing season.
“You let your teammates down, your coach starts getting angry at you and people might think you’re making it up,” she said.
She said for her, she didn’t want others to think she was exaggerating the pain, something she thinks many athletes fear.
UNC-CH senior Lindsey Broadwell, a rugby player, experienced her second concussion last fall. Although doctors have told her she’s at risk of long-term effects after a third, the risk isn’t keeping her out of the game.
Broadwell said her experience as a college athlete has been positive. Any time she or a teammate was injured, coaches and trainers emphasized their health above anything else. With the resources UNC-CH provides, she feels safe.
“Our coach puts the opinion of our athletic trainers as a priority. If she says going back onto the field is a no-go, it’s a no-go,” she said.
Missy Frasier is a fourth-year doctoral student in the human movement science program at UNC-CH and helps provide resources for student-athletes recovering from injuries. Her research includes emergency care and the relationship between repeated concussions and neurological behavior.
As an athletics trainer, she was once covering a baseball game, and a ball struck her in the head. She suffered a skull fracture, brain bleed and ruptured eardrum, and her injuries were beyond the scope of what most athletes experience. Experiencing those injuries make her that much more interested in keeping student-athletes safe, she said.
“My goal is to help people much like myself, and help people with significantly worse injuries, and work on prevention of these injuries and on predictive models of who is at greater risk for injury,” she said.
She said states, including North Carolina, have passed laws making it illegal to allow a child to play after exhibiting signs of concussion. She said she feels stigma can stem from people not understanding what a concussion is and the painful effects. Because they can’t see the injury, there can be a stigma of weakness.
“If you sprain your ankle or break your arm, there is a sling, a cast or a boot or something to signify that you are injured, “she said. “But most people when they sustain head injuries, they look totally fine.”
While some of the emotional toll from a concussion might stem from pressure from other people, she argues much of it stems from oneself.
“People often feel pressure, and sometimes it’s self-inflicted pressure. If you’re an athlete, you’re competitive and you’re taught to work through ankle sprains and jammed fingers,” Frasier said.
Register-Mihalik said females are more likely to report concussions and admit to severe pain, but research is unclear regarding whether females are more susceptible to concussions or if it is societal pressure that leads males to hide their injuries. It’s complicated, she said, and there are a lot of factors that play into it.
She compares it to the stigma associated with mental illness, complicated and not always logical. People don’t want to tell even those close to them out of fear of how others will perceive the injury.
Education, she said, is the core of the solution. And she thinks coaches need to be more pro-active.
“We were talking to a six-year-old and his mother (at a local school information session),” Register-Mihalik said. “We asked him would he keep participating in sports if he had been hit in the head and didn’t feel well afterwards. And he sat there for a minute, and he looked and me and said said ‘I’d keep playing.’ His mom looked horrified. So we asked him why he would keep playing. He looked at his mom and said, ‘Well my mom told me to never quit.’”
She said the interaction speaks a lot to the root of the problem: misinformation and lack of education from an early age.
“When we tell these messages that are good things, good qualities like perseverance, not quitting, courage, being tough,” she said. “You have to be a positive member of society, but being tough doesn’t mean being illogical.”
For Emma, there are still hard days, and there will always be hard days. It won’t be easy to live with pain and be unable to play the sport she has always loved. She still has migraines, and if her head starts hurting during exercise, she is very cautious to stop.
She does think education about head injuries have improved with time.
“Even six or seven years ago when I was being recruited to come here, there was very much more of a notion that it’s just a headache,” she said. “Push through.”
But progress doesn’t mean the job is finished. There’s the management, awareness and prevention of head injuries and need for education from a young age, Emma said.
Because as Emma says, an athlete can get a knee or hip replacement, but there’s no brain replacement surgery.