The concussed female brain

Alex: So, the basic pass I start everyone off with is basically 10 points of contact. Got fingers…

Caroline Criado Perez, narrating: It’s a windy day at Swansea University.

Alex: And you go from here and all you do is just push out.

Izzy: Some people find it easier to go…

Caroline, narrating: I’m here with Izzy, who plays rugby for Swansea University women’s first team, Alex, her coach, and producer, Hannah, and I’m learning how to throw a rugby ball.

[Sound of throwing ball]

Caroline: Ah, sorry.

Caroline, narrating: This is harder for me than it sounds because I have a squint, which means I’m bad at judging distances. And this means I have spent much of my adult life avoiding balls.

Caroline: Oh! Sorry.

Alex: All right, I got it.

Caroline, narrating: You’re probably wondering what I’m doing standing in a concrete forecourt in windy Wales, learning to throw a ball at the age of 37. Well, I’m here because of something that happens quite a lot in rugby. And in fact in boxing, football, hockey, and a whole bunch of other sports. I’m here because this week we’re going to be investigating concussions.

I’ve known for a while about the existence of a huge data gap when it comes to concussions in female athletes. For a long time, concussions weren’t thought about at all, even in the context of men’s sports. But in the last couple of decades, it’s become more acknowledged as an issue. As a result, there’s now loads of money floating around in men’s sports like football, whether of the American variety or of the variety that the rest of the world plays.

And so now in 2022, we really know quite a lot about how a man doing headers in the Premier League might experience concussion. But when it comes to women’s sports, not so much. We know far less about how concussion happens in women. Things like why women may be more susceptible to concussions and why recovery times tend to be longer remain a mystery. We also just know far less about female brains, partly because the vast majority of brain research has been done on, yes, you guessed it, male brains. All of which means that we’re much worse at spotting concussions in women. And this means that we’re far less likely to treat them.

I’m Caroline Criado Perez and this is Visible Women, my weekly podcast from Tortoise investigating how we finally fix a world designed for men.

Concussions are a serious health problem for female athletes, and this is an issue that needs fixing. But as I discovered while researching this episode, there’s another, and even more worrying data gap when it comes to concussions. And so this week I’m going to tell you about an unlikely relationship between rugby and domestic violence.

The story starts with an email I got during the first COVID lockdown in 2020 from Dr. Liz Williams, a senior lecturer in sport and exercise sciences at Swansea University.

Liz Williams, reading email: … pay far, far more attention to women’s rugby…

Caroline, narrating: Liz’s email was quite long, going into some detail on the findings of her research, which is on head impacts in female rugby players. At the end of the email she wrote, ‘When this lockdown’s over, you are more than welcome to visit our lab at Swansea.’ Probably never thinking I’d take her up on the offer.

Hannah Varrall: Yeah, here’s good. Yeah, thank you.

[Car door opening]

Caroline, narrating: Sorry, Liz.

[Car door closing]

Caroline, narrating: Liz and her PhD student, Freja Petrie, agreed to meet me and producer Hannah and talk to us about their research, along with Liz’s four month old baby, Chiara.

Liz: I’ve been telling her all about your work.

Caroline: Hello. Have you read my book? Did you like it? Are you very cross about the gender data gap? Yes…

Caroline, narrating: Important introductions over, Liz, Freja and Chiara led the way to the lab where they showed us some pretty serious looking equipment that they were using to measure, and most importantly, try to prevent concussions in Swansea University’s female rugby players.

Liz: Neck strength rigs. Yeah.

Caroline, narrating: Liz and Freja have both experienced concussions. Freja’s had three from playing rugby at university.

Freja Petrie: The first one was a knockout when I was in a ruck with the prop from the other team who was a lot bigger than me.

Caroline, narrating: Liz experienced several concussions during her earlier career as a track cyclist for the New Zealand national team.

Liz: I’ve always wanted to study women because I always thought when I was cycling that, you know I can fall off and have a concussion and then I would be ill for months. But the boys, they just seemed to bounce back a lot faster.

Caroline, narrating: What Liz noticed in her teammates has now been backed up by research in sports like football, lacrosse, and rugby.

Liz: Females have recorded longer return to play times across all of those sports in quite a few different studies.

Caroline, narrating: But still the vast majority of research into concussions has been in men.

Liz: All of the literature to date, bar our paper and maybe two others from the States have focused on men, mainly professional men who have full-time medical staff.

Caroline, narrating: Liz and Freja have been giving Swansea University’s rugby players specially designed mouthguards to wear during games, which measure the speed, rotation and force of any head impacts they might sustain.

Caroline: Well, it looks like my retainer. It’s a clear plastic mouth shaped thing.

Caroline, narrating: Freja also spent months analysing videos of the university teams playing rugby. And the data they collected threw up something surprising; men and women were falling differently.

Freja: So if you watch the men fall backwards, it looks like they contract their abs, they contract their neck and almost end up falling on their bum or lower back. Whereas women just go flying backwards and they kind of land on their heads and shoulders instead.

Caroline: Why is neck strength important for head impacts?

Liz: Even if you get tackled, like a big body slam, if your neck isn’t very robust, you’re going to have this massive whiplash problem. It’s the same in car crashes.

Caroline: So it’s a whiplash rather than like your head hitting something?

Liz: Yeah, well, it’s both. But the whiplash is what we see in females causing their heads to hit whatever’s in their way.

Caroline, narrating: And women’s necks are actually not generally that robust compared to men’s. Part of this is simply down to biological differences at the top of the spine and in muscle mass distribution.

Liz: It’s the same in car crashes.

Caroline: Right. Okay. So because your head sort of flails, then you might hit back on-

Liz: Yeah.

Caroline: Right. I see.

Liz: Yeah. Or somebody’s head or somebody’s foot, somebody’s knee, the ground.

Caroline: Right. I see.

Caroline, narrating: This is obviously a serious problem in contact sports like rugby. And it’s one that’s compounded by a failure to take it seriously. Male players will always have a properly qualified medic during a match watching out for serious injuries. But there often isn’t one in the women’s game. And even if there is a medic, they are unlikely to be trained in spotting head injuries in women.

Liz: The mechanisms by which they get the head impacts are so different that the medics don’t necessarily look for that.

Caroline: If there’s a medic at all.

Liz: If there’s a medic. And often it’s somebody who’s in a really unfair position, like a second year physio student. They can put ice on, they can do musculoskeletal injuries, but they like a lot of other people don’t know what to look for with a brain injury or don’t know how to recognise a brain injury.

Caroline, narrating: Even if a female player lucks out and has her head injury spotted, she will then have to run the gauntlet of a care system that simply doesn’t believe women. As Freja found.

Freja: I did get concussed in November and went to a doctor, but the question I got asked was, “What makes you think you were concussed?” And that really irritated me because I’d had the textbook symptoms. I’m doing a PhD in this. And with a lot of our girls and the rugby players I speak to, it’s, oh, we know we should go to a doctor, but we don’t want to wait in A&E for six hours and then almost have our symptoms dismissed. And I wish I’d pulled the doctor up on that at the time, but I didn’t really feel brave enough.

Caroline: And if you with a PhD who knows exactly what you’re talking about doesn’t feel brave enough, then how would most normal people feel?

Caroline, narrating : Freja also told me about another female rugby player who had a similar experience.

Freja: We had one player with a mouth guard. We sent her to A&E with a printout of the impact and a copy of that data. And they still didn’t really believe her.

Caroline: Why did they not believe her?

Freja: It’s not almost that they didn’t believe her, but she’s a very pretty blonde girl, and it’s kind of almost an expectation that girls don’t play rugby very roughly. And you don’t need to know anything about concussion to know that she was displaying symptoms and wasn’t okay.

Caroline, narrating: Liz spends a lot of time worrying about whiplash. And she’s worried about it off the rugby field too.

Liz: By the same token as the whiplash in car crashes being a lot higher in females than the whiplash on the rugby field being a lot higher in females. Is the same thing true when you get punched in the head or you get thrown against a wall? Is your head more likely to slam into the wall because of the sex differences and the neck strength differences than if you were a guy?

Caroline, narrating: When I started looking into concussions, I was mainly interested in how the focus on male athletes’ brains might be letting down female athletes. I have to be honest, I hadn’t really thought about the wider impact Liz was highlighting here. But now she’d mentioned it, I couldn’t stop thinking about it.

Liz: So you go onto a rugby field and you know that your chances of getting a head impact are quite high. But victims of domestic violence and car crashes, where it involves head trauma, you don’t choose that.

Caroline, narrating: One in three women globally are victims of intimate partner violence. That’s about 971 million women and girls alive today. Which feels to me like a lot more people than are playing contact sports, whether in the male or the female game. Is anyone collecting data on them?

As many listeners will be aware, the world has recently experienced a huge surge in rates of domestic violence.

Sky News: National figures suggest lockdown has created a pressure cooker behind closed doors.

ABC News: The shadow pandemic is the name the United Nations has given to the rise of violence against women over the past year.

60 Minutes Australia: In some cases, lockdowns have turned homes into prisons, which in turn has made…

BBC News: It says across the world, domestic violence helplines and shelters are reporting rising calls for help.

Caroline, narrating: Between 2020 and 2021, domestic violence cases increased by 25% to 33% globally. In part a result of COVID lockdown measures, which were mostly imposed without reference to gendered outcomes.

After I spoke to Liz, I hit Google and came across an article published earlier this year in The New York Times talking about a hidden epidemic of brain injury in victims of domestic violence. The article briefly mentioned a pilot project in Arizona where police officers were being trained to spot brain injuries in victims of domestic violence. This felt like the data collection project I needed in my life. And I wanted to speak to the people behind it.

Hirsch Handmaker: The literature was really sparse. We couldn’t find very, very much in the way of frequency data.

Caroline, narrating: This is Dr. Hirsch Handmaker.

Hirsch: Chairman and CEO of the Cactis Foundation in Scottsdale, Arizona.

Caroline, narrating: Since 2014, the Cactis Foundation has been working to improve the data on traumatic brain injury in victims of domestic violence. But the foundation actually started life back in 2010 as a medical imaging company working predominantly in concussions in sports, specifically baseball.

Hirsch: So we created a programme for baseline testing of youth athletes. Baseline tested them and then educated the coaches and the parents and the kids about the risk of going back to play after they’ve had a concussion.

Caroline, narrating: Those risks, by the way, are severe.

Hirsch: The most serious consequence of a concussion is the second concussion before the first one heals. The football players and soccer players and people being studied after they die who’ve had these serial concussions, they develop pathologies that are in the brain that lead to very serious consequences; suicide, homicides, abnormal behaviour. And those were the result of this repetitive injury.

Caroline, narrating: Now that we know how dangerous serial concussions are, most sports, or men’s sports at least, have developed strict protocols to avoid them. In men’s football and rugby, for example, if an athlete has a head injury, they’re meant to be removed from the pitch and seen by a medic. If they then get diagnosed with a concussion, and, as we’ve seen, for female athletes this is by no means a given, they are made to sit out upcoming games and rest for at least a week or two until their brains are healed. These rules are an important intervention and have doubtless prevented numerous serious brain injuries. But they are not replicable outside of the highly regulated and closely monitored world of sport.

So what about when a concussion happens out in the real world? What about when it happens to someone who doesn’t have a medic on hand? And who certainly doesn’t have the luxury of taking a couple of weeks off from being hit in the head?

Becky: So there were definitely multiple injuries at once or day after day, definitely. And if there wasn’t a major day of per se physical abuse, it was definitely psychological and emotional.

Caroline, narrating: This is Becky, it’s not her real name. Just a heads up that what follows is distressing to hear.

Becky: That aggression from the moment that I woke up in the morning was completely on me. I had my head busted open. I’ve had both of my eyes busted, with stitches. And my nose has been broken. I’ve had staples in my head, stitches in my chin…

Caroline, narrating: Becky met her abuser when she was 17 years old.

Becky: We were both young and we just started hanging out. And after about a year is when we kind of made it official.

Caroline: And was he abusive from the beginning?

Becky: Now that I look at it, yes. Trying to tell me where to go. Or if my friends wanted to go out, “Don’t go,” and try to start an argument with me. And I would more take it as, oh, he doesn’t want anything to happen to me, he wants me to stay at home where I’m safe. Whereas it was indeed just him trying to be controlling. Once he would get the yes, okay, I’m going to stay home, the next thing you know he was leaving the home and I was at home by myself.

Caroline, narrating: It wasn’t long though before the physical abuse started.

Becky: Yeah, yeah. He would do little small things like if we got into a little argument, he would grab a towel and pretend like he was trying to smack me with it or sting me with it. But I noticed that probably happened within a year of our relationship, I started to, those subtle signs and those playful hits weren’t playful anymore.

Caroline, narrating: Like me, Hirsch had never considered the issue of concussions in domestic violence victims until one of the Cactis board members went to an event at a women’s shelter.

Hirsch: And the woman who made the presentation was talking about, that she thought that a significant number of individuals at the shelter were behaving like they had had a concussion or head injury. And he said, you need to meet this person because …

Caroline, narrating: It was this chance encounter that led Hirsch to discover the lack of data on the prevalence of brain injury in victims of domestic violence.

Hirsch: Data was very, very sparse and very poor from our viewpoint. And almost all of that research and all of that data was done from either shelters or public advocacy centres. Now if you think about that, who were those women that they were then counting? They’re women who’d already made the most significant change in their lives, they’ve left the abuser. Now what percentage of victims of intimate partner violence or domestic violence actually leave the abuser? It’s a tiny number compared to what we know the police reports show.

Jonny Lifshitz: What we’ve learned from the situation with domestic violence and brain injury is that only the more severe cases are going to show up in the emergency department.

Caroline, narrating: This is Dr. Jonny Lifshitz. He’s a neuroscientist and he works with Hirsch at the Cactis Foundation as Lead Scientific Director.

Jonny: And often those cases are going to be hidden or those cases are going to be confounded by many clinical issues at the same time. And so we just don’t have the opportunity to evaluate concussions from domestic violence in the same manner that we do sports.

Hirsch: When we talked about the need for data, we said, what data would you really like to have? And what we decided was, you really want to know the incidence at the point of incident, when it happens, how often does that happen?

Caroline, narrating: The point of incident usually only involves two people, the abuser and their victim. And it’s notoriously hard to gather data from survivors. Often the abuser manipulates them not to talk about what’s happening, or doesn’t allow them to seek medical help.

Becky: The abuser is still trying to control the victim while the police are there. They will make sure that they slam the door before they walk outside to talk to the police to remind you that, you know, they’re in control and you better watch what you say. And in the back of your mind, you already know, okay, well, they may take him, they may not take him. How much do I say to the police? How much do I not say to the police?

Caroline, narrating: But as Jonny tells me, even without these obstacles, someone who’s just suffered a brain injury is simply not the ideal witness.

Jonny: For all intents and purposes, the patient or the victim is the least reliable source because the element that they need to report reliably has been damaged.

Caroline, narrating: But if the Cactis Foundation was going to be able to deliver solutions for abused women, they were going to need data. So they thought about who else they could approach. And they came up with the police.

The police might not be there as the blows are falling, but they are often the first on the scene in the immediate aftermath. And so Hirsch and Jonny set up a pilot project with a local police force with the help of its Sergeant, Mark Higby.

Hirsch: All of his officers and detectives came to a large meeting, and we were very apprehensive about presenting the information to them, and then asking them to work with us, to try and zero in on this frequency issue. And we got the opposite. We got a very positive response, a lot of enthusiasm.

Caroline, narrating: The idea was that police officers would be trained on what symptoms and behaviour to look out for when attending a call out which might involve domestic violence. Jonny tells me they used sports as a starting point.

Jonny: In the United States, it’s relatively accurate to say that most of our police officers played contact sports in their youth. And as a result of that, they’ve had and seen individuals on their teams who have had concussions. And if their teammate can’t remember who they’re playing or which direction they’re supposed to be shooting the ball or what’s happening, then they can put that in perspective of the victim who may not exactly know what’s going on.

Caroline, narrating: Someone who’s just experienced a head injury might not come across like the perfect victim.

Hirsch: One of the things we learned from the officers was when they walk into a scene and the victim has sunglasses on, the assumption was that they were a druggie and they had red eyes or something and they were hiding. Well, no, they had photophobia because of the concussion.

Caroline, narrating: They might behave erratically, they may have trouble following instructions. And this can cause problems for a victim when the police show up.

Jonny: In a typical case, there’s a perpetrator and there’s a victim. If one of those individuals has a head injury and doesn’t really know where they are or when they are or what happened, it may sound like they are trying to avoid speaking with the police officers. It may sound like they are trying to lie to the police officers. And therefore their conversation is something less than. It doesn’t have the coherence that the individual who doesn’t have the head injury, typically the perpetrator, has.

Caroline, narrating: Victims of a head trauma may also struggle to regulate their emotions. They may even become aggressive.

As well as being trained in spotting behaviours that may indicate a brain injury, the police officers were also trained to carry out a near point convergence test, which measures vision. Which Jonny explains is a major tell when it comes to brain injury.

Jonny: It takes an exceptional amount of brain and computing power to take two eyes separated by two or three inches and have them focus on one object and make it clear and then process that information.

Caroline, narrating: And Hirsch says, the near point convergence is one of the few objective tests we have.

Hirsch: Take your finger and put it in front of your nose like this.

Caroline: Okay. 

Caroline, narrating: If you’re trying this with us, hold your finger vertically about 30 centimetres from your nose and focus your eyes on it.

Hirsch: And bring it close to your nose. At some point it will double.

Caroline, narrating: If you’re not concussed, your finger will start looking like two fingers at about six centimetres away from your nose.

Hirsch: In people who’ve had a concussion, it can range from eight, 10 to 30 or more. So they get this double vision at farther distances. And that lack of being able to converge affects your ability to read and to concentrate on words and fill out forms.

Caroline, narrating: When the Mesa Police started conducting these tests, what they found was shocking.

Hirsch: 70% of the people that have been examined now at Mesa and Tempe, Mesa’s a community of about 400,000 people in Maricopa County. 70% of the domestic violence victims or more have abnormal near point convergence abnormalities. We know that concussions are common.

Caroline, narrating: The figure that Hirsch gave really struck me because it was so similar to a figure I’d heard from another researcher, Dr. Eve Valera, who’s been working on traumatic brain injury and domestic violence for decades. In one of her first studies on the topic, she interviewed 99 victims of domestic violence.

Eve: And of those 99 women, 74% reported at least one brain injury from their partner.

Caroline, narrating:This would indicate that around 70% of victims of domestic violence have experienced a brain injury. To give you an idea of what that means, in the UK, 1.6 million women are victims of domestic violence every year. Which would mean that millions of women in the UK today may currently be living with brain injuries. The majority of them, likely undiagnosed.

Eve was actually one of the first people working on brain injuries in interpersonal violence. She’s now an associate professor at Harvard Medical School and a research scientist at Massachusetts General Hospital. But Eve first got interested in the topic in the mid nineties when she was studying neuropsychology at graduate school while also volunteering at a women’s shelter.

Eve: I would talk to these women and learn about their experiences, which clearly involved hits to the head. People who’d been stomped on the head or had their head slammed against a car window or a door or a door frame or thrown off of something or out of something. And so their heads may have hit something. And they also, we know historically that women who’ve experienced partner violence would talk about them having problems with things like memory or just attention. Or they may have depression or anxiety or post-traumatic stress symptoms. And the general idea was that that was all associated with the psychological trauma of being in such a toxic and horrible relationship, which makes a lot of sense.

Caroline, narrating: Except, as Eve was learning at grad school, these symptoms also looked a lot like brain damage. When Eve finished her PhD, she wanted to carry on studying traumatic brain injury in women who had experienced intimate partner violence. But there was a small problem.

Eve: There were no labs for me to go to after graduating. There was no such thing as a lab where you could continue learning about brain injuries in women who had experienced partner violence because it just didn’t exist.

Caroline, narrating: There was just no data. And the data is still really sparse because, well, so is the funding. Even as research funding from sports has come pouring in over the past decade, Eve still struggles to fund her pioneering research.

Eve: So then the question is, why is that? Why do we recognise this in these other areas and not in an area where almost by definition, partner violence, you can expect some type of damage to some part of the body? I think part of it is, basically, what is valued in society. And there was money to be made if you were to study it in other areas. So the Department of Justice can provide money for studying brain injury in veterans. And then, well, the NFL didn’t really want to pony up dough, but ultimately they have provided funding. And so then that really became the thing to study. And I think part of it also is, it just doesn’t occur to people, probably because they don’t think about it as much as they should. But once I mention this, or they say, somebody will tell me, once I read that, I read that article, and it was like a light bulb moment. I’ve heard that so many times. So it’s not something that people recognise necessarily on their own. But then they’ll hear it said, and if they’re paying attention, they’ll be like, oh wow, yeah, that makes a lot of sense. How could we not be looking at this?

Caroline, narrating: Through perseverance, Eve has managed to cobble together money from various sources to fund her research. And what she’s found makes it clear that we can’t take research in male athletes and apply it to female victims of domestic violence because the context is just far too different.

Eve: You could also have other types of acquired brain injuries, and specifically for women who’ve experienced partner violence, they may be strangled, which would potentially lead to a strangulation related brain injury. The immediate stressor of the assault that led to the brain injury is also something else. They are often walking on eggshells around their partner, so they have chronic stressors. They also will often have other bodily injuries, maybe broken arms, detached retinas, shattered orbital bones. And they don’t necessarily have the social support that folks who are recovering from an athletic injury have.

Caroline, narrating: Eve’s data from the mid nineties also revealed that just over half her participants reported repetitive brain injuries from their partners. Which, as we know, is when the serious damage sets in. It also makes it harder for a woman to leave.

Eve: “I can’t get out because I’m not capable, I just can’t do it, I know I have all these problems, I can’t even balance a cheque book.” Well, maybe you can’t balance a cheque book because you’ve been sustaining brain injuries. And until you get out, you won’t be able to.

Caroline, narrating: I wanted to know what training police have here in the UK when it comes to head injuries in the context of domestic violence. So I called up Hannah and Patricia.

Hannah: Because at the moment, police, I mean, presumably they’re aware that domestic violence exists, but I don’t know, do they have…

Caroline: They’re pretty bad at it

Patricia: They don’t have that kind of training for sure

Caroline: Maybe we could email like a whole bunch of them and see who comes back.

Caroline, narrating: Patricia and Hannah worked out the areas in the UK with the highest incidence of domestic violence.

Patricia: Devon and Cornwall.

Hannah: Hang on, let me write these down.

Patricia: Staffordshire, then Durham.

Caroline, narrating: The next day they made some phone calls.

[Phone ringing]

Voicemail message: Or to hear more options, please press one.

Patricia: Hi Richard, this is Patricia Clark calling from Tortoise Media…

Hannah: Wondering if I could talk to someone on your domestic violence team or something like that…

Patricia: And I came across this US study, they basically trained police officers to look for concussions in domestic abuse…

Hannah: And we were wondering if that’s something that happens in the UK and if it happens within the Devon and Cornwall area…

Caroline, narrating: There were two responses that kept coming up.

Constabulary receptionist: I’m afraid I’ve never heard of that, but it doesn’t mean it’s not happening. It just means that I haven’t been told about it.

Constabulary receptionist: To be honest, Hannah, it’s probably better if you pop this in an email because obviously we’d need…

Caroline, narrating: And so we waited for the replies to come in.

Of course, recognising concussions from domestic violence is not just the responsibility of the police. Healthcare professionals are also likely to interact with victims. But they’re missing the signs too.

Eve: Very few people are really looking for brain injury in women who have experienced partner violence. Even well-intentioned folks in the ER or in a medical setting who may be sensitive to intimate partner violence and the effects, they even overlook it. Because it’s just for whatever reason that light bulb moment hasn’t happened. They’re patching them up, they’re helping them, but they’re not realising that maybe the reason they’re not sleeping or the reason they seem disoriented, et cetera, is because they had a brain injury.

Acute presentation of a concussion or mild traumatic brain injury can look very much like someone who’s intoxicated. So there can be a misunderstanding there as well. Which can certainly have significant ramifications for women, either initially with law enforcement or later on in the judicial system, et cetera.

So that’s why I think raising awareness is so important because we want to basically have everyone entertain the idea that a woman may have sustained a brain injury. I think if we don’t entertain that idea, if we don’t ask those questions, we may very well be missing it.

Caroline, narrating: If someone had asked Becky those questions, she might have escaped her abuser sooner.

Becky: I mean, there were so many situations that the law, that hospitals, that somebody could have noticed that something was wrong. And nobody did. One hospital I went to 10 times. And nobody ever questioned the lie that I told them, if there was any abuse at home. But when you have an abuser who tells you that nobody else cares and nobody else is going to do anything. And then all these people see this going on, and nobody does do anything, who do you turn to?

Caroline, narrating: Becky ended up staying with him for 20 years.

Becky: I don’t know what gave me the strength that day to just finally say I’m done. I just, I woke up that morning and I just felt so different within myself. I don’t know. And I just knew if I stayed, it was just a matter of time before I wasn’t going to be there.

I had a granddaughter that was going to be born in a month. And I had already messed up with my daughter. And her having to see that in my home. And I didn’t want to lose out on the aspects to be able to be with my granddaughter and in her life. And I just had already sacrificed so much. And I was getting ready to turn 40 and I just couldn’t imagine turning 60 and looking in the mirror and feeling the same way. And if it was going to stop, I had to be the one to stop it.

Caroline, narrating: It wasn’t until after she left that Becky started to notice symptoms.

Becky: Little simple things were kind of hard for me. Trying to remember to do things or standing up to get something and going in another room and I’m just blankly staring at the room. Like, why did I even get up?

I’ll be in full blown conversations with people and know in my mind exactly what I’m going to say, and then just my mind will go completely blank. Lots of fatigue and vision, different things in your vision will come up that you notice. Headaches, lots of headaches and migraines. And a lot of different nerve feelings. But I never noticed those symptoms or realised that they were abuse related until after I left.

Caroline, narrating:  Becky’s now receiving the help that she needs.

Becky: I had MRIs done, I had a spinal tap done, CAT scans done, and then lots of vision testing, speech testing, physical therapy testing just to make sure all the nerves and everything are going correctly in the places that they need to be. I take medication and Botox for my migraines. That definitely has helped a tremendous amount. I’m doing speech therapy and occupational therapy, I do physical therapy, I do counselling. And I do all of these at least once a week.

Caroline, narrating: It’s great that Becky’s now receiving treatment. But it’s galling to hear about all the missed opportunities to help get her out sooner. Her story makes it clear just how important the work being done by the Cactis Foundation is. But like Eve, Hirsch says they struggle for funding.

Hirsch: Just write the damn check and start allowing states and counties and facilities to explore these issues and work more for them. We work hand to mouth. We have a small grant that has kept us going from the Cares Act and through the state of Arizona, which has been very helpful. But there just aren’t a lot of funds available nationally to allow us to educate all the people that need to be educated, recruit and train social workers and so forth.

Caroline, narrating: It would be fantastic if the Cactis Foundation could get the funds they need to take this programme national. But what about the UK?

[Voice note notification sound]

Hannah: Patricia and I emailed a load of different police forces around the UK. And for the ones that have replied, they seem to say, oh yeah, well, officers get first aid training and so they would know what to look out for. Which is not quite what we’re talking about. We’re saying, when they go to a case that’s domestic violence, do they think, I need to check that this is not a concussion.

Caroline, narrating: A couple of them also suggested contacting the NPCC, the National Police Chiefs Council.

Hannah: And the NPCC got back and said, I suspect some of this would come under basic first aid training for police officers. Given the focus on training, I would suggest contacting the College of Policing as they’d be best placed to answer.

Patricia: So we’ve had a really useful response from the College of Policing who’ve given us a bit more information about how or how not police officers are trained to deal with concussions here in the UK. 

Caroline: OK. 

Patricia: They told us that police officers are trained to look for hidden medical conditions in a domestic abuse setting, but not specifically concussions. So if they arrive at someone’s house, they know that they might have to call specialists in, but they don’t necessarily know about traumatic brain injury. They did follow up with a helpful, although slightly confusing, email where they said that they’ve got a specific module in head injury as part of their first aid learning programme, that isn’t for all officers. So the way they phrased it is, “This is only a requirement in higher modules than that given as a minimum to response officers.” So in other words, the minimum training doesn’t include head injury, but in some specific instances they will train, and I think they’ve put here, so first aid in a custody setting.

Caroline: That’s interesting. So that suggests that the training exists, so they could roll it out more widely.

Patricia: Well, they’ve said, “The range of incidents that they attend,” they, being police officers, “mean it’s not possible or viable for all officers to be trained for all types of medical emergencies. Or for their learning programme to explicitly outline the appropriate medical response in every context.” So they’re basically saying, police officers aren’t medics, you can’t expect us to do this.

Caroline: No, well, they’re not medics, but that’s not what is happening in Arizona. What’s happening there is that the police officers are being trained to spot, possibly there is a thing that could be going on here, let’s get a specialist in. So they’re not being asked to diagnose a concussion and that’s not what we’re suggesting.

I feel like it’s a bit disingenuous to say, “Oh, you can’t expect us to train on every random thing that might come up.” This isn’t a random thing that might come up. This is a very high proportion of domestic violence victims. What was it? 74%. That’s not a small number. It’s more likely than not that she will have a brain injury. So, that feels like something they should be training police to be aware of.

Caroline, narrating: In the meantime, the research continues.

Caroline: You’ve been working at this for about 25 years. Have you seen any change in the awareness of this as a problem in doctors, in lawmakers?

Eve: If you were to ask me this question, I don’t know, seven or eight years ago, I’d say very little to none, change anywhere overall. But very recently in the past few years, there have been a growing number of folks who are doing research in this area. And a growing number of people who have been able to reach out.

I know personally in California, I have been invited to give trainings to judges. And then in Tennessee, I was invited for something for a women’s council. So the fact that I am being approached by a number of different organisations like from all walks of life to talk about this, means that at least someone in that organisation recognises this. So there are positive signs. Do I think we’re anywhere close to where we need to be? No. But I’m very cautiously optimistic that we are absolutely moving in the right direction.

Caroline: Let’s say there’s someone listening to this podcast in the same situation as you were five years ago. What would you say to them?

Becky: It’s hard, but leave. It’s not safe for your kids. They’ll do better without the trauma every day. They’re going to do better with a healed mom. And when you leave, seriously leave. And take what you need and move somewhere far away. Run and run as far as and as fast as you can. It’s hard. It is so hard at the beginning. But it definitely gets better.

And I love the fact that I get to wake up in the morning and I get to just be me. Life can be better and it’s an adjustment. But when you really put that time into it, it’s so worth it. Life is so great now, I would not take it back. I love every aspect of it. I’ve mended my relationship with my daughter. We are best friends now. I have my granddaughter that I get to be with every single day. We all live together. And we just have built this little close knit family. And the love that I thought I needed from him, I’m definitely getting from my kids that I should have been thinking of the whole entire time.

Caroline, narrating: Thanks for listening to this episode of Visible Women from Tortoise. This episode was written and produced by me, Caroline Criado Perez, alongside Hannah Varrall and Patricia Clark. The executive producer is Basia Cummings. It features original music by Tom Kinsella and sound design from Sam at String Cast Media.