An 'invisible epidemic': Survivors of domestic violence on living with traumatic brain injury

Published November 18, 2022 at 5:00 AM EST

(In Pictures Ltd./Corbis via Getty Images)

Sign up for the On Point newsletter here.

This rebroadcast originally aired on January 20, 2022.

Editor’s Note: If you or someone you know is experiencing domestic abuse, use a safe computer and contact help. Call the National Domestic Violence Hotline at 800.799.SAFE (7233), or visit https://www.thehotline.org.

The suffering caused by domestic violence is emotional, spiritual and physical.

But there’s one aspect of that suffering that is almost invisible.

“When you think about domestic violence and brain injury, almost everyone I talked to was like, ‘Oh my gosh, that totally makes sense. How had we not thought about that before?’ But we really have not made that connection,” licensed social worker Rachel Ramirez says.

And yet millions of survivors have been living with the impacts of these brain injuries, sometimes for decades.

“Problems with balance, problems with vision, sensory problems, seizures, headaches,” Ramirez says.

So why is there so little research, and awareness?

“There is no surge here. This has been here forever. It was here in the past. It’s here now, and it’s going to be here in the future,” neuroscientist Eve Valera says. “It’s not going to go away.”

Today, On Point: Survivors of domestic violence on living with traumatic brain injury.

Guests

Eve Valera, PhD, neuroscientist with more than 20 years of experience researching traumatic brain injury resulting from intimate partner violence. Associate professor at Harvard Medical School and research scientist at Massachusetts General Hospital. (@EveValera2)

Rachel Ramirez, licensed social worker. Founder and director of the Center on Partner-Inflicted Brain Injury, a project run by the Ohio Domestic Violence Network. Co-author of “Trauma-Informed Approaches.” (@OhioDVN)

Also Featured

Freya Doe, a domestic violence survivor.

In this ‘First Person’ diary we hear from Freya Doe about her own journey in discovering her traumatic brain injury.

In this web extra, Paula Walters shares how she discovered her brain injury. Find the web extra here.

Show Transcript

MEGHNA CHAKRABARTI: Today, we’re going to talk about a hidden long-term consequence of domestic violence. As such, we will be hearing stories from survivors. So, a warning to listeners. Some of these stories contain explicit details of physical abuse. Freya Doe shared her story with us and the abuse she suffered from the very beginning of her first marriage when she was just 18 years old.

FREYA DOE: In the very beginning, I thought I was happy. I thought I was getting the things that I wanted and needed emotionally. Looking back, I wasn’t happy. I was always in emotional turmoil, to be quite honest. There was a lot of tears. There was a lot of crying. But he was very good at convincing me that I was happy. And that he was the one for me. And again, it wasn’t until I was much older that I looked back and realized that I was not content. And what was happening was not love. It was obsession. It was manipulation. And in a lot of ways, it was torture.

I was not allowed to leave the house. I had one friend that was his friend’s wife, who I was allowed to hang out with. I wasn’t allowed to get a job. And as time progressed, he got more and more frustrated with things at work. He was in the military, so he couldn’t get upset with his sergeant. So he would bring that anger home with him, and lash out at me. Anywhere from walking in the door and flinging his keys at my head, to grabbing me and slamming my head against the wall. If I said, how was your day? I might get punched. It was a constant situation of not necessarily knowing who was going to walk through that door. If he had a good day, things would be OK. If he had a bad day … anything goes.

There was a day when he had been drinking in the morning, and I had gone out and done laundry and I brought it home. And he was upset about something that someone had said to him, and got into a fight with me. And punched me in the face first and then picked me up and threw me off a porch. And then proceeded to jump on top of me, and repeatedly slammed my head into the ground and punched me in the face. Eventually, I woke up on the floor. And then he just stopped dead and looked at me and said, ‘What’s wrong with you?’ And I said, ‘What do you mean?’ And he said, ‘Your eyes.’ And he stood me up, and I went over to the dresser and I looked and the blood vessels in my eyes were starting to burst.

That convinced him to allow me to call 9-1-1. But he kept saying, ‘I don’t want to get in trouble.’ ‘I don’t want to get in trouble. If you call 9-1-1, they’ll find out what I did.’ And I said, ‘Listen, I will just tell them that I fell off the porch, that I was dizzy and slammed the door into my face. It’ll be OK. Just just let me call them, I need to go to the hospital.’

And they came. They got me under the backboard. They put the neck brace on. They got me in the stretcher. I’m completely tied down. And the guy in the ambulance gets in and he’s sitting next to me, and my husband is standing on the end of the ambulance, looking down at me, as this guy says, ‘Did your husband do this to you?’ And I just shook my head as much as I could, which was not much. And, ‘No, no. Of course not. He would never do something like that to me. He loves me. He would never. He would never hurt me.’

They did 22 X-rays of my head, neck, back and chest. And I was in the hospital for five days. And a neurologist came in to see me, and he said, ‘Well, looks like, you know, you’ve got a concussion.’ And he said, ‘You know, you’re probably going to have some light sensitivity for a while and you’ll have some migraines, maybe. But the blood will drain out of your eyes and you know, everything will go back to normal.’

I just thought, ‘OK, well, you know, by the time the blood drains out of my eyes, the migraine should probably go away and light sensitivity will probably go away.’ And the funny thing is, is that neither has ever gone away.

And it wasn’t until about 15 years later that I started having some cognitive issues where I would be talking to somebody and all of a sudden in the middle of conversation, I would just kind of stop dead and my eyes would look around. Because I could not for the life of me, remember what it was that I was talking about. I could be in mid-sentence and just all of a sudden, it’s gone. Everything I was just thinking is just out of my head, and I started thinking that I was getting early onset Alzheimer’s, or some kind of dementia or something to that effect. I chose at that point in time, from fear, to basically ignore that and just put it out of my head. Tell myself, it’s just something that happens to people. And then I started forgetting words. Like I knew what I wanted to say, and I could describe what I wanted to say, but the actual word that I wanted to use, I could not find.

And every time that I would forget a word or I’d forget what I was talking about, or I wouldn’t remember somebody’s name that I had known for forever. That stress would like spike. And I had also developed a lot of anxiety. I started having panic attacks and things like that, that’s how stressed this whole thing had gotten me.

It didn’t really dawn on me that I was still having these symptoms from that particular event. It never went through my mind.

CHAKRABARTI: Freya is a pseudonym. We are not disclosing her name or location in order to protect her safety. There is much more to her story, which we will hear later in the show. As you heard Freya describe, though, she was clearly suffering from repeated traumatic brain injury due to the violence she suffered by the hand of her first husband.

Well, Eve Valera joins us now. She’s an associate professor at Harvard Medical School and a neuroscientist who spent more than 20 years researching the prevalence of traumatic brain injury resulting from, excuse me, intimate partner violence. Professor Valera, welcome to On Point.

EVE VALERA: Thank you, Meghna. So nice to be here. And I’m very appreciative of the opportunity to talk about this issue.

CHAKRABARTI: Can I just first ask you, can you briefly describe to us how many women survivors there may be in the United States like Freya?

VALERA: Well in my work, if you want to extrapolate from that, in the study found that about 74% women sustained at least one traumatic brain injury from the partner, and just over 50% sustained repetitive brain injuries from their partners. And so to put that in perspective, that could be, potentially, if this is extrapolating from my data, which is not epidemiological, but nonetheless an extrapolation. Over 31 million women might be walking around with brain injury from their partners.

And 24 million women, and this is in the U.S. alone, walking around with repetitive brain injuries from their partners. If we want to compare that to sports, so you say, what does that really mean? Or other situations in which we know that there’s recognized, let’s just say, brain injuries. Annual estimates for servicemen and women might be around 18,000. And for the National Football League of the United States, that would be around 300 or 400 a year. Annual estimates for women could be as high as 1.6 million.

So from my estimates, and again, these could be high because we don’t have great epidemiological data. But even if you were to slash that considerably, there’s really no comparison in terms of the number of women who I think have repetitive brain injuries and the number of men, largely, who are being studied in athletics or the military.

CHAKRABARTI: Can you tell us the story of where you were when you first started trying to put two and two together about TBI and survivors of domestic violence.

VALERA: Absolutely. I was actually in graduate school and I was doing volunteer work in a women’s shelter. That was part of my interest. And I was also learning about neuropsychology, which looks at the effects of things like brain injuries in people. And so as I’m doing the work in the shelter, I hear these stories … about women having their heads slammed against floors and walls, being thrown down stairs, having heads smashed against the car window. And I said, my gosh, these women are certainly sustaining brain injuries.

And from what I was learning in my graduate work, it was clear that brain injuries are related to cognitive functioning, emotional functioning, behavioral problems like headaches, etc. And the women at the shelter were also reporting symptoms like that. So I looked and I said, okay, what do we know about this? This is crazy. We have to figure this out. And I do a search. I go to the library. It wasn’t a single article. Absolutely nothing. And this is in the ’90s. There was not one article that came up … no matter what type of search words I used.

CHAKRABARTI: Nothing.

VALERA: Exactly.

CHAKRABARTI: Today, we’re talking about what could be considered a hidden epidemic of traumatic brain injury among survivors of domestic violence. Potentially tens of millions of people in this country suffering traumatic brain injury due to violence received by the hands of their intimate partners. I’m joined today by Amy Valera. She’s a neuroscientist who spent more than 20 years researching TBI and intimate partner violence.

I’d like to now bring in Rachel Ramirez into the conversation. She’s with us from Columbus, Ohio. And she’s a licensed social worker and founder-director of the Center on Partner Inflicted Brain Injury. It’s a project run by the Ohio Domestic Violence Network. Rachel Ramirez, welcome to you.

RACHEL RAMIREZ: Thank you so much for having me. I’ve been waiting to talk about this with an audience like yours for a long time. So we really appreciate you bringing the importance and the attention to this issue that it deserves.

CHAKRABARTI: You’ve done surveys, Rachel, among survivors and health care providers about what they know regarding the possibility of head trauma and TBI and domestic violence. What have you found about how much is known?

RAMIREZ: Well, just to give you a little bit of background, I work for the statewide coalition on domestic violence. We have 75 local domestic violence programs that provide services to over 100,000 individuals in Ohio. And one of the roles of our work at the coalition, of which I’ve been at for 15 years, is really preparing domestic violence programs to provide the best service possible to survivors who are experiencing abuse. And we were given a grant in 2016 to look at increasing access to domestic violence services.

And I got very, very lucky that we had written in the Ohio State University as an evaluation partner on that grant. After the grant was awarded, I sat down with Dr. Julianna Nemeth at the College of Public Health at Ohio State. And it became very clear that we had so much more that we needed to learn about this issue, that we wanted to take a research route into this. So we went and we talked to five local domestic violence programs, members of ours, and also talked to survivors who were accessing those services in 2017. When we talked to survivors and we asked, have you been hit in the head, or hurt in the head?

86% of survivors said yes. With half of survivors saying, I couldn’t even tell you how many times I’ve been hit or hurt in the head. And 83% of survivors had been choked or strangled, which is another cause of brain injury, with about a fifth of them saying that they had been choked or strangled too many times to count. And over 70% saying that they had been strangled a few times, at least a few times.

CHAKRABARTI: And so can I just jump in here for a quick second? I expect someone who’s going through that kind of abuse and trauma to think about these things. But when you ask them later on in that 2017 survey, did they say if they had ever wondered if they had suffered some kind of brain injury from that abuse?

RAMIREZ: Hardly anybody said that. And all of these interviews were done in person, on site, face to face interviews. And I think even through the conversation of having it with survivors, even though survivors had this extensive history of head trauma, they had never thought about it in the context of a concussion, never thought about it in context of a brain injury. And that being the source of some of their challenges and some of their struggles.

CHAKRABARTI: And then what about the health care providers that you talked to as well?

RAMIREZ: The service providers that we talked to were mostly individuals who are working with domestic violence programs. And we asked them questions about how much do you know about brain injury? Have you ever learned anything about brain injury? What have been your experiences working with survivors, with brain injuries? And it was amazing how it was almost like a blank stare that we got back from many domestic violence service providers.

… But then even a few minutes into the group, or 15 minutes, 30 minutes later, people would say, well, I remember this survivor who had told me about head trauma and was having this and this challenge and struggle. Maybe that was a brain injury. Or remember this survivor who had struggles after experiencing strangulation, and maybe that was a brain injury. It was a framework that was really just being introduced to everybody. But it was something that everyone was like, Oh, my gosh, this makes so much sense.

CHAKRABARTI: Professor Valera, you told us a few minutes ago that you had first started thinking about this in the late ’90s. And, you know, Rachel’s been working on this for a long time, too, Rachel just said that this survey that she’s talking about was done in 2017. Now, well before 2017, we as a nation were talking about head injuries and traumatic brain injuries in athletes.

We had football players sitting there telling us about how their lives were transformed by all the hits they took to the head, even with their helmets. Military, as you had mentioned earlier, with concussions and head injuries from war. And yet, I mean, it’s shocking to hear that it seemed like such a light bulb moment … when asked among … domestic violence survivors.

… How is it possible that it went so long, even as you and Rachel and others have been trying to expand awareness about this?

VALERA: I will say that there’s no good reason for it. Honestly, there’s no good reason. But I mean, there’s a lot of potential reasons we could hypothesize about. I mean, in truth, it’s a male dominated society and men get studied more than women. If we’re going to talk about understanding brain injuries, for example, in research, we know that men are overwhelmingly studied, whether you’re studying humans or animals.

And they had to actually put out an initiative to say, hey, we have to study more females. This has to be more of an even thing, in the National Institutes of Health, which provides a lot of grant funding. And so it was recognized that females weren’t even really being studied the way they should. So most of what we know about brain injury is based on men. And what happens, I think, is we end up learning or studying or focusing on things that are, quote-unquote, important to us or important to society. And what’s important to society?

Well, of course, you know, the men and women who serve in the military are important to society. And that’s absolutely true. I mean, we value those people. And also for a lot of people, football is important to society. I mean, of course, we watch these people on prime time, you know, smash themselves, you know, repeatedly in a game of football every Sunday or Thursday or Monday or whatever. And the NFL, the National Football League is a huge industry. So, of course, that’s important.

So when something comes out in one of those arenas that says this is really important and these people may be sustaining brain injuries, then people pay attention. But when a paper gets written on arguably a marginalized section of the population because people say, oh, those are just, you know, women who experience partner violence, those are just kind of those women over there. They’re not that important. Well, they could just leave if they want to, or that’s a private family matter. And then it’s very stigmatizing, too.

So we don’t want to talk about it in that regard. So basically, we know gender-based violence, it disproportionately affects women, Native Americans, LGBTQ communities and underserved communities. So in my opinion, it’s largely driven by the fact that this just isn’t deemed as important. So there haven’t been the resources to study it.

CHAKRABARTI: … Rachel, let me turn back to you. And before I fully do, I’ll just throw this in. If there’s anyone from the NFL listening who wants to use their gigantic megaphone to draw attention to the hidden epidemic of domestic violence survivors also suffering from traumatic brain injury. Please do. But, you know, in thinking about the comparison of the trauma that athletes or soldiers go through, they now have protocols, though, right?

Like every time you get hit in the head or experienced some kind of potentially concussive events, you get sidelined and examined or you get taken off active duty, etc. There are protocols in place, but … for survivors of domestic violence, A, they may never get medical care in the wake of the latest attack on them. And B, if they do, I’m not sure there are any protocols in place right now to ask about traumatic brain injury, and see there’s no sideline for them. They have to continue on in their lives.

RAMIREZ: Yeah. It’s a lot, isn’t it? You know, I think that that was something that was so interesting. One of the really important collaborations we’ve tried to do is help bring people who do brain injury work and people who do domestic violence work together to talk about this issue. But they are fields that have operated in very, very separate orbits and very, very separate spheres. And when you see, and when we think even about some of the identification protocols we have for veterans and athletes, a lot of those depend on bystanders or training parents, training coaches, training teachers to recognize signs.

There aren’t any bystanders in domestic violence. There are very few individuals who are assaulted in the head or choked or strangled in front of somebody. So there’s nobody to stop the clock, nobody to check and make sure that you’re doing okay. I mean, we just heard Freya’s story about her journey just to even get someone to look at her. And then you see protocols that see things like avoid stress. And it’s just totally unrealistic for the situation of domestic violence survivors, which is why talking about this in forums and in places like this is so important, because there’s no kind of external group of people that we can train that can go in and, you know, kind of be there watching and alert for a possible brain injury.

CHAKRABARTI: When someone suffers from a brain injury, what are the treatments that are in order to recover from it? I mean, reduction of mental load, things like that. And what is that supposed to look like? Eve, let me turn to you on that first.

VALERA: We don’t have some gold standard medicine or anything like that we can give people when they have a brain injury. So it’s not something as simple as that. But just as we’ve seen in terms of what happens. So, for example, in athletics, you hit the nail on the head. There’s a reduction of mental load, a physical load, etc. And there’s a knowledge that you’ve sustained this brain injury. And if you keep pushing yourself and if you currently have what we call post concussive symptoms, those symptoms that may occur after brain injury, which may include headache, dizziness, fatigue, depression, etc.

If you have those symptoms and you keep pushing yourself, you’re much less likely to recover from them. It’s going to take longer to recover than if you dial everything back. And then gradually resume your regular activities, once you feel like you can, and you don’t have those symptoms return. And avoiding stressors like the bright lights or the loud noises and things like that. So that is basically the protocol for people who have brain injuries. And another really important factor is avoiding sustaining another brain injury period, but especially before that previous brain injury has had time to recover.

So for the women who are experiencing partner violence, they may easily, and we know that many of them are sustaining brain injuries. One brain injury, they’re still probably suffering from that one. Still have symptoms. And then they sustained another one. And maybe it would be in the form of, you know, getting their head hit against something.

We don’t even know what the interaction is between something like a traumatic brain injury where their head is physically forced to smash against something, or strangulation that may cut off oxygen to the brain and cause potentially hypoxic damage to the brain. And that’s another form of what we might say in acquired brain injury. So there’s so many unknowns, and that’s just another reason why women in partner violence situations need to be studied. Because, you know, if you look at other brain injured populations, even repetitive brain injuries, say, for example, maybe in the military or in sports, they’re getting a certain type of brain injury.

CHAKRABARTI: I think you were saying that in terms of athletics, in football in particular, we understand the type of brain injuries better than we understand the type of brain injuries that survivors of domestic violence have. Because we don’t have enough research about what’s happening in people’s homes. Rachel, let me turn back to you. So again, we’re going to talk about in the show, like, how do we improve this situation? But I want to better understand the status quo at the moment. How hard is it for survivors to get assistance or services at the moment?

RAMIREZ: That that is one of our challenges. As we have set up a service system that, again, was constructed in the 1980s and 1990s. And when we had a lot less knowledge about domestic violence, a lot less knowledge about brain injury and a lot less knowledge about the intersection. So brain injury and its impact wasn’t even really taken into consideration when we were designing these services, and these systems. Thinking about the complicated paperwork that sometimes domestic violence victims might need to do if they want to get a protection order. Talking about the importance of their story or being able to remember details of events when somebody might be involved in a criminal prosecution.

My world and my responsibility at the statewide coalition is really looking at domestic violence programs. And it was even getting to the point where we were like, oh, my gosh, you know, we have these people coming into shelter services and then we have this big packet of intake paperwork. And we have certain kind of pressures on, you know, we want to get people back out. We want to get people into permanent housing. We want to do that and kind of trying to get people on a very quick timeline, figuring out housing, figuring out childcare, figuring out finances, figuring all of these things out.

And so I think it really, really forced us, a part of the kind of the big picture that we’ve learned from our work, is we really need to think about how we’re providing services differently and think about how we’re accommodating some of these unique needs. And maybe the best thing for a survivor to do if they come into shelter is to sleep for 16 hours. And that doesn’t mean that they don’t want to meet with us, and that doesn’t mean they’re not interested in figuring out housing.

CHAKRABARTI: Today, we’re talking about what could be a hidden epidemic of traumatic brain injury among survivors of domestic violence in this country. I’m joined today by Rachel Ramirez. She’s with us from Columbus, Ohio. She’s a licensed social worker and founder and director of the Center on Partner Inflicted Brain Injury, a project run by the Ohio Domestic Violence Network. And Eva Valera is with us as well, associate professor at Harvard Medical School and a neuroscientist who spent a couple of decades researching the prevalence of TBI and in among intimate partner violence survivors.

And, you know, a minute or two ago, I had said, hey, maybe if anyone from the NFL wants to use their megaphone to shine a light on this. Well, we got a very notable comment on Twitter from Abe Levine, who told me it should be noted that the NFL has a domestic abuse problem and should be shining a light on how partners of, quote, modern gladiators might also be part of this traumatic brain injury epidemic. But this, of course, would force the NFL and Americans to ask larger question. So, Abe. Point well taken.

Now, I want to go back, if we can, and listen to more of the story from Freya Doe. We heard from her at the beginning of the show and the truly awful abuse she suffered in her first marriage. She told us about her husband smashing her head repeatedly against the wall, throwing her off a porch, hospitalizing her. Her brain was damaged. She had trouble reading, remembering names and even what she was saying, sometimes mid-sentence. And all of those problems he was having. Well, she eventually discovered their root cause.

FREYA DOE: I don’t think I ever put two and two together until when I saw the article that Dr. Valera had written. And I was reading it. And I’m looking at all of these symptoms from traumatic brain injury, from domestic violence. And I’m like, got that, got that, got that. Been dealing with that. Oh, my God. I need to talk to this woman. So it had been almost 30 years since I had the traumatic brain injury. You know, one of my traumatic brain injuries. But it was 15 years when I started noticing symptoms, but I didn’t know what those symptoms were related to. And it wasn’t until I spoke with Dr. Valera in 2016, 2017, when I finally had answers. And having an answer to what was going on with me was such a relief.

And it also allowed me to realize that what happened to me was not a shameful thing. The shame did not belong on me. The shame belonged on him. I know now that sometimes what happens to me is neuro fatigue. So if I’m working an eight hour day, by the end of that day, I try not doing anything that’s too brainy, so to speak, because I know I could possibly make a mistake because by that time of the day, I’m getting neuro fatigued.

And when I get neural fatigue, I start stuttering. I have many times had to say to people, now I apologize, but my weekend is super busy doing X, Y or Z, so I can’t do this other activity. Can we do it another weekend or you know, I have to limit myself for the things that I can do beyond going to work, which kind of stinks. But it is what it is and it’s what I have to do in order to keep symptoms at bay. And I told her at that time that, you know, the reason I reached out to her was I didn’t think that there was anything that might ever be able to be done for me to help fix me.

But if my story, if what happened to me, if my brain, if studying something with me would help someone in the future, not have to ever have that question of am I, you know, having early onset Alzheimer’s or some kind of dementia, or am I losing my mind. If I could in any way contribute to her studies and help anybody in the future, either not have to deal with that or to help them get answers sooner so that maybe, you know, I could help them discovering ways of helping to reverse these things.

Whatever it is that I could do. I wanted to volunteer to do. That’s why I donated my brain to the VA brain bank. They can’t have it now. They have to wait till I’m dead. That’s why I volunteered for anything that I could do, including, you know, speaking at these medical symposiums, because I wasn’t somebody that got help within a few days or a week or a month or even a year of the brain injury. As being somebody who, it’s been 30 years and I’ve really had no medical intervention for rehabilitation. I wanted to do what I could for anyone else down the line. I have the most wonderful husband in the world.

When I told him about everything that had happened to me. He just reached over and held me. And he cried for me. And he just said to me, How could anybody do that to you? And I said, I don’t know. But they did. He is a very dedicated, loving, tender, sweet human being, and he has been there for me through so many things. … We’ve together for 16 years. … And we’ve been through so many things and every day, I’m happy. There isn’t a day that goes by that, you know, there’s not a hug and a kiss.

There’s always I love you’s. I have the American dream without unfortunately, without the children. But I got the house and the white picket fence and the husband and the dog and six chickens. I got a good job, good friends. I have a loving family. And, you know, nothing in life is perfect, but life is pretty darn good.

CHAKRABARTI: Freya Doe. And again we are not using her real name. Freya is a pseudonym in order to protect her safety. Rachel I’ll start with you first. There’s so much that Freya said that we should talk about, but it really just stopped me in my tracks when she said learning about the fact that she had a traumatic brain injury helped her feel less ashamed and that it allowed her to begin to understand that the shame belonged to her former husband.

How important is that? Because I imagine, especially when perhaps there’s, you know, children in the picture. And as a survivor, having trouble concentrating, your head hurts, all of these things which make it even harder to function in an already impossible environment. The shame must be crippling. So how important is it … to help women realize it’s not their fault?

RAMIREZ: I will tell you, one of the most powerful things of this whole project is hearing domestic violence victims say, you know, I thought I was stupid. I thought I was crazy. I thought it was me. I didn’t know if this stuff was real. But for there to be that knowledge that some of the things that you might be struggling with are impacted by injury. It’s not because you’re stupid. It’s not because something’s wrong with you.

And also that there are ways in which … we can accommodate for those needs. Freya talked about how having knowledge and really recognizing that she’s neuro fatigued at the end of the day, and she arranges her days differently and doesn’t think that when she comes home from work, and her brain’s really tired and she can’t do all of the other tasks that it’s me and I should be able to do this. And I used to be able to do this stuff and now I can’t. So it must be something wrong with me.

So that has been a huge load off of survivors. And we really think it does help prevent worsening mental health. It does help prevent worsening health problems. It does help prevent even things. I’ve talked to survivors who have been suicidal because they have all of these things going on and they keep going to these doctors and all of those different kinds of things. So I think … it has been so amazing for survivors to better understand how they’ve been impacted. And then think about there might be ways in which they can live their lives differently. And also to have that knowledge, to be able to make their own decisions about their daily activities and how they do things.

CHAKRABARTI: So Eve let me turn to you, because we keep saying there may be an epidemic out there, and I have to put that qualifier on there because we don’t, as you said at the beginning, the show, we don’t firmly know and we don’t know because there hasn’t been enough research yet.

Now, Senator Catherine Cortez Masto from Nevada actually authored, spearheaded some legislation to get the General Accounting Office to take a look at what HHS, Health and Human Services is doing, regarding are they doing a better job at finding the data or collecting the data about traumatic brain injury and domestic violence?

And the GAO in 2020 found that HHS is not doing enough right now. We reached out to Senator Cortez Masto’s office to ask about this, and they said that senators working with HHS and the GAO and next steps, to be sure that Health and Human Services can collect this important data. So what needs to happen to get that done?

VALERA: There’s so many things. I mean, to start, we need more funding. So we absolutely need funding in every category of understanding this issue. So first for research. So for example, like when we talk about NIH grants, when I tried to get my grant, one of the comments was this has been done before because it had been done in male athletes or had been done in servicemen and women. And that is one of the most ridiculous comments ever.

But nonetheless, that delayed me getting the funding because of a viewer with a comment like that. … We need funding to study women and not just women who have experienced brain injuries, but women who have experienced partner violence. That may also include things like strangulation, that may result in an interaction between acquired brain injuries from strangulation and traumatic brain injuries from traumas directly to the head. And so money is key here.

… Epidemiological research would be great because then we can know the actual numbers, but then it will help us understand more specifically about what’s going on. I mean, my data have shown connections between brain injuries and women’s ability to learn a list of words, to remember that list of words, to do tasks, you know, cognitive flexibility tasks. … More brain injuries are associated with having greater levels of depression, anxiety, post-traumatic symptom symptomatology. And strangulation is related to independent of the other types of brain injuries, is related to working memory and long-term memory and depression as well. But there are very, very, very few data out there like this.

And, you know, and I’ve sort of done this sometimes on shoestring budgets. My imaging data were basically from a center of excellence grant from Harvard and that was $30,000. And I produced two imaging studies out of that, which is almost miraculous, because usually it takes hundreds of thousands of dollars to do imaging studies. And so that’s really where we need to start for research. And then, you know, money for shelters and education.

CHAKRABARTI: Well, so you’re saying that awareness among even the research community that this is worthy of funding. That seems quite, quite important. Rachel, I’m going to turn back to you in a second. We’re running out of time, though, and I should have done this much earlier. But Eve, there may be people listening to this right now who are saying, I know someone that has gone through this, or this has happened to me. Where could they go right now for help or more information?

RAMIREZ: First of all, I mean, we know one of the things I spent my career doing training and education so that training, education and awareness is such an important next step. But I think that, you know, support people out there. You are not alone. The national domestic violence hotline is available, that you can go to the hotline … for information. [They] have webchat, they have texting, they have a hotline number, there are several resources that have been listed, you know, on your website around the show.

But we also have at the Ohio Domestic Violence Network … our center on partner afflicted brain injury, there are resources and information that are developed and designed for domestic violence survivors who have experienced brain injury to again, to better understand what it looks like. What are some of those symptoms? What are some of those things you might be noticing about yourself, or some of those signs that you might be noticing about somebody you know who might be different.

I think the other thing to remember is that everybody who is listening plays a key role in addressing brain injury caused by violence and addressing domestic violence in general. A very, very, very small percentage of domestic violence victims actually reach out to domestic violence service providers. They talk to their friends, they talk to their families, they talk to their work colleagues. They talk to people they know and trust.

One of the reasons that we don’t have data or we know so little about this is we’ve never asked those questions or provided that education and asked questions like, you know, thank you so much for sharing about your experience. I’m here to support you. Have you ever been hit or hurt in the head? You know, do you know if you get hit or hurt in the head? It can have all of these different symptoms that we’ve talked about that aren’t necessarily obvious. That might not happen right away. And here’s some information about that.

So having an educated general public, I always say now when I provide trainings about domestic violence and I ask people, what does domestic violence look like? People know it’s more than physical violence. They know it’s emotional abuse, they know it’s financial abuse. But also for the general public to know that domestic violence can also cause a brain injury is really, really important.

From The Reading List

Harvard Health Blog: “Intimate partner violence and traumatic brain injury: An ‘invisible’ public health epidemic” — “While studying brain injuries in the mid-1990s, I began volunteering in a domestic violence shelter. I noticed that the abuse and problems many women reported were consistent with possibly experiencing concussions.”

Listen: In this episode, we hear from survivors of domestic abuse.

In this web extra, Paula Walters shares how she discovered her brain injury. Find the web extra here.

More Resources

Pink Concussions: A nonprofit for survivors of female brain injury from sports, violence or military service.
The Center on Partner Inflicted Brain Injury: This project of the Ohio Domestic Violence Network provides statewide, national and international leadership to raise awareness of brain injury caused by domestic violence.
Abused & Brain Injured: Toolkits for survivors of intimate partner violence and traumatic brain injury.
Concussion Awareness Training Tool: Online training resources addressing concussion recognition, diagnosis, treatment and management.
BrainLine: Information and resources about treating and living with traumatic brain injury (TBI) and PTSD.

This article was originally published on WBUR.org.