Why scientists ignore the top cause of traumatic brain injuries

The first time my then-partner threw me against a wall, I blamed myself. I was late coming home from work, and I hadn't even greeted him when I walked through our door. I immediately started complaining about the unwashed dishes and food scraps littering our kitchen. He was angry, shouting at me, and then I felt his arms around me, lifting me slightly. I blacked out when the back of my head hit the kitchen wall.

The nature of abuse is that it escalates, and soon my partner was routinely injuring my head, having learned that my hair would effectively hide any bruises or evidence. Over the course of the last year of our relationship, I probably sustained at least three concussions, though none were formally diagnosed. My previously infrequent migraines became almost daily realities, and my work performance tanked, along with my concentration. Simple tasks became overwhelming. Thoughts slipped from my head before I was able to act on them. I lost my ability to form coherent sentences, and I struggled to find words for even mundane items: train, telephone, exit. Exit. I couldn't plan for shit.

I am part of what Eve Valera calls an " invisible public health epidemic " of untreated traumatic brain injuries among survivors of intimate partner violence. Valera, an assistant professor in psychiatry at Harvard Medical School who runs a brain-imaging research lab at Massachusetts General Hospital, estimates that millions of women and people of marginalized genders have suffered from both intimate partner violence and untreated concussions. Yet concussions-a form of traumatic brain injury-are generally viewed as a sports-related problem. Concussion research has focused primarily on the relatively tiny population of men who play professional football.

This patriarchy problem doesn't just harm survivors of intimate partner violence-it's also bad for science.

Let's start with the numbers: Fewer than 2,000 men currently play in the National Football League. In contrast, at least one in four women and people of marginalized genders, including an estimated 29 million women in the US, have experienced severe physical violence from an intimate partner. Most people who experience intimate partner violence-as many as 92% in one small study-report that their abusers injured their heads. As a result, some experts believe that intimate partner violence may be the number one cause of traumatic brain injuries.

Research shows that intimate partner violence is widely underreported, partly because many abusers isolate their victims and prevent them from seeking medical care. (I, myself, rarely talked about the abuse I was experiencing, and I don't have any documentation of it.) But even when survivors are able to access health care, the misperception of concussions as athletic injuries increases the chances that their traumatic brain injuries will go undiagnosed, and therefore untreated. Concussions-especially if left untreated-can lead to depression, difficulty concentrating, emotional dysregulation, and long-term declines in cognitive health and abilities. Yet when clinicians see these symptoms in a patient who discloses experiencing intimate partner violence, they are significantly more likely to attribute the symptoms to mental illness or the trauma of abuse, without investigating the possibility of traumatic brain injury.

If concussion science followed the numbers, we would see more survivors of intimate partner violence screened and treated for traumatic brain injuries, but we would also see more traumatic brain injury patients screened and treated for intimate partner violence. As it stands, however, such screening is inconsistent, and clinicians are often unprepared to handle disclosures of intimate partner violence.

I experienced this problem firsthand, when I convinced my then-partner to let me see a neurologist under the guise of obtaining migraine medication. I began to describe the violence I lived with, including the trauma to my head, but the neurologist stopped me. "You have migraines, which are common," I recall her saying. "Let's not go chasing zebras every time we hear hoof beats."

Many service providers and organizations focused on intimate partner violence lack awareness of concussions and their impacts. As a result, they may miss concussion symptoms in their clients, and they often fail to design programs in ways that accommodate the needs and limitations of people suffering from traumatic brain injuries.

Scientists' biases about traumatic brain injury may also hinder efforts to understand one of the most alarming long-term consequences of concussions: chronic traumatic encephalopathy, or CTE, a pattern of brain degeneration with devastating effects on mental and physical functioning.

Not everyone who gets concussions will develop CTE, but studies of athletes show that it is much more likely to occur when people sustain a second concussion before the first one has a chance to heal. Research also shows that most intimate partner violence is episodic and escalating, with the periods between attacks becoming progressively shorter over time. The fact that many concussions caused by intimate partner violence go untreated further increases the risk for CTE.

In other words, the patterns of intimate partner violence are potentially a perfect storm for CTE. However, survivors of such violence have not yet been included in basic science research about the disease.

By underestimating or ignoring the link between intimate partner violence, concussions, and CTE, researchers may be missing valuable insights-and distorting the data before it is even collected. What are we missing about the role trauma plays in brain injury and subsequent recovery? Is the mechanism of healing different for injuries sustained under different circumstances? And how much generalizable, useful knowledge can we really gain from studies that focus exclusively on men-particularly elite male athletes, whose lives and access to resources are vastly different from the general population?

The general population includes a hell of a lot of survivors of intimate partner violence. Research that does not take us into account may be inherently unreliable.

As an abuse survivor living with the long-term impacts of my untreated concussions, this is all very personal for me. My abuser maintained power over me by isolating, silencing, and discrediting me. And in a world where even science rarely acknowledged my reality, it was easy for him to convince me that no one would believe me if I talked.

In order to leave my abuser for safer ground, I needed to be seen and believed. The same might be said of the millions of other survivors who have effectively been told by the scientific establishment that neither they nor the issues and health problems that impact them are worth prioritizing.

I believe in science, but for science to be unbiased, it needs to be explicitly feminist, explicitly intersectional, and explicitly committed to questioning the social status quo as the very first step in formulating research questions. Recognizing survivors of intimate partner violence as a critical population for traumatic brain injury research would be a good start. To do otherwise would not only perpetuate oppression and patriarchy; it would produce bad, irrelevant, and, most of all, incomplete science.