When we talk about brain injuries, we usually talk about men. The media’s recent focus on this health issue has focused on male-dominated fields such as professional football and the military.
Men are, in fact, far more likely to suffer brain injuries, but the numbers of women affected are nonetheless significant. Over 30 percent of brain-injury patients are women. And little research has focused specifically on them — which could have big consequences for their recovery.
Betty Tobler wears her braids tied back in a low ponytail. She doesn’t look like someone with a severe injury. But walking around her house, it is impossible not to notice the challenges she faces nearly every moment of her life.
The lights in her house are kept low, because bright lights give her headaches. There are wipe boards with dates scribbled on them in the kitchen and hallways. Thanksgiving is written in big letters, because she said, “The holiday will come and go and I will never think about it.”
She has a book filled with information she does not want to forget. Her towels and potholders are all still in their packages. “If you notice how clean my stove is. I don’t cook. Because I could forget, and that could be dangerous,” Tobler said.
Tobler’s troubles began 14 years ago, when she was working as a caregiver for adults with mental disabilities. One of the clients had behavior issues, lost his temper, and got violent.
“He was, first of all, 6’8” with size 13 shoes, 300 some pounds. I remember the punches on this side, which is my right side. And I remember hitting the floor and then something coming down like that, so that was his foot stomping the side of my head,” Tobler said.
Tobler stopped working. She stopped driving. She had trouble remembering recent details, and big chunks of her past. She said she only knows her mother, who died years before her injury, through pictures.
“And to be honest with you I didn’t even knew who my dad was. It’s like he was just a figure. Nothing made sense during that time,” Tobler said.
In the nearly decade and a half since, attention to brain injuries has increased and more research has been done. Unfortunately, very little of it has focused on women.
“I think it’s essential to include women, because if we are only including men, or primarily including men, we are coming to incorrect or potentially incorrect conclusions about how to treat women and what certain patterns of behavior mean,” said Janiece Pompa, clinical professor at the University of Utah.
Experts say the lack of research is not intentional. Since more men have brain injuries, more of them are studied. But some research suggests there are gender differences that are important to understand in order to improve treatment.
Pompa said a recent study focused on children who play soccer. “It seems like girls actually have more severe head injuries than boys do. Which seems kinda disturbing, but valuable to know,” she said.
Pompa says a lot of the research is still in its early stages and a lot more is needed to draw good conclusions.
She says our society has gotten better about screening professional athletes and veterans, but, “We have to be mindful too of the segment of the population with domestic abuse. That’s someone who could be undiagnosed. There are a lot more undiagnosed injuries than we know about.”
Deckard’s organization does outreach in shelters. She said even being shaken by a partner can bruise the brain. In a small survey of domestic violence survivors, more than 60 percent reported signs of a brain injury.
Ginny Lazzara, a nurse who also works with the Brain Injury Association, said there is a reason brain injuries are called “the invisible epidemic.”
“We have to understand that this goes way bigger than we would have ever imagined. There are so many people who have had brain injuries and been living with them and do not know that was why,” said Lazzara.
Both Lazzara and Deckard say they are thankful for the attention professional athletes and veterans have brought to brain injuries. Now, they hope, the focus will expand. Betty Tobler hopes for that too.
“I feel there is more focus toward brain injury because the men have contact sport, but there are women who play basketball, volleyball, or not even playing sports at all,” said Tobler. “You could be walking down the street the wrong way and hit your head. I feel there should be a lot of focus regarding brain injuries, period.”
Tobler said maybe then, she and her injury won’t be quite so invisible.
Shannon Heffernan is a WBEZ reporter. Follow her on Twitter @shannon_h