What Happens When the Healthcare System Doesn't Believe Women?

Women are more likely to have their symptoms dismissed, more likely to be diagnosed later, and more likely to be told that pain, fatigue, or serious medical concerns are "all in their head."

In this special Rupture roundtable, Wendy brings together three returning guests, Lara Benjamin, Nina, and Fallon Morey, for a candid conversation about gender bias in healthcare.

From traumatic brain injury and chronic illness to pregnancy, autism, military medicine, and motherhood, they share the moments when they knew something was wrong, and what happened when the system refused to listen.

This is a conversation about healthcare, but it's also a conversation about power, credibility, and what happens when women are forced to become their own advocates just to receive basic care.

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Transcript

SPEAKER_02 0:00

Welcome back to Rupture, the world of best guesses stand. I'm Wendy Lurie. The topic for today's episode was never on a list. It didn't show up on an agenda. It didn't emerge from a brainstorming or design thinking workshop. Instead, this topic came up over and over organically in my conversations with women on this show, specifically around healthcare. And the topic has come up with such frequency and such urgency that it became clear this is something we need to talk about. The topic? Each of them joined me earlier for conversations about the events that ruptured their lives. And one theme emerged from all of those conversations, and it's been echoed by so many other people I've heard from since. And the theme is this how women are treated by the healthcare system. Specifically, how women are treated differently from men by our healthcare system. So this is the conversation we're going to have. And this is the conversation we need to have. Welcome back to Rupture, ladies. So happy to have you.

SPEAKER_00 1:34

Thank you. Thank you.

SPEAKER_02 1:36

Let's go around and do introductions. Why don't we go, Nina, Fall, and Lara? Nina, kick us off.

SPEAKER_00 1:42

Okay. My name is Nina. I am a graphic designer, photo retoucher artist. Single mom. Yeah. And I was diagnosed with lupus a couple of years ago. I also am a single mother to a special needs child and have been dealing with raising him and navigating the care system of the healthcare system ever since the day he was born, basically.

SPEAKER_02 2:04

Thank you, Nina.

SPEAKER_04 2:05

Fallon. Hi, I'm Fallon. I have been on the show before talking about invisible disability. I work a little bit in the healthcare space on kind of the administrative side. I'm not a practitioner provider. Um I'm also a mom to one special needs child. And yeah, just happy to be here.

SPEAKER_01 2:27

Thank you.

SPEAKER_05 2:28

Lara? Hey, I'm Lara. I'm also a single mom. Hey, look at this. We got a little club going on here. I actually am not working currently. I had to leave my job in February due to my brain injury. So yeah, you guys are much more accomplished than me at the moment.

SPEAKER_02 2:47

I couldn't hold on to my full-time job either. So we have that solidarity. All right, Lara, let's start with you. So let's just let's just get into this question. So it's when was the first time you were made to feel like you were being treated differently by the system because you were a woman? And how did that manifest? Was it dismissal, misdiagnosis, delay? And did you see it as gendered at the time?

SPEAKER_05 3:10

To be honest, like the first time that I ever really noticed a difference for myself. Wait, so I was raised in a very male-centered environment in a very male-centered church. So all of this like seemed just like regular stuff to me, like originally. So the first time I really noticed that there was something weird going on was when I was pregnant with my last child, my fourth, well, my fourth through term to turn. So I was going in for one of my last OB appointments, and we were gonna do a C-section because he was such a big baby. He was supposed to be like almost 13 pounds, is how he was measuring. And I went in. I know. We were listening I birthed all toddlers, like every single one. They were all like football players, like right out the gate. Anyway, so we were gonna do a C-section just to like kind of keep him safe and to keep me safe. And I I was I had asked the doctor if we could go ahead and just tie my tubes while you were in there because I'd had five pregnancies and this was my fourth child two term with that doctor's office. And the doctor was like, Well, you're kind of young. I was 35, by the way. You're kind of young. Like, what if you want to have more kids down the line? And I was like, I have seven, because I was raising my stepchildren at the time too. So this was gonna be my seventh child in my house. And I knew like I don't want to do this anymore. And he's like, You might want to have another baby sometime. And I was like, I don't think so. When I said I have seven, he was like, that is a lot. And then he like wrote in his little notes that we were gonna go ahead and do the tuple. And for me, that was a terrifying experience because the environment that I was in, I was uh not supposed to get my tubes tied. I was not supposed, I was like, my job was to like continue like pushing out babies, you know. Like that's just where and it was dangerous, patriarchy, yes, and it was dangerous for me to even be asking for this. So I remember being just terrified that he was gonna say no, and then what was I gonna do? And what strikes me is that just a couple of years later, I have a friend who was exactly my age when I got my tubes tied, and a man, and he decided he wanted to get a vasectomy because he started dating a woman who was allergic to latex. So he's like, I'm just gonna go in and get snipped. And he just called up, made an appointment, no questions asked. He was in and out. Like he got in two days later, you know, and nobody questioned him. Nobody said, Are you sure about this? Are you sure this is the best thing for your body? I think that was the the first time that I was like, this is kind of messed up.

SPEAKER_02 6:17

And you saw you recognized it as a gendered problem at at the time. Yes. Yeah, yeah. Yeah. That's uh wow.

unknown 6:25

Okay.

SPEAKER_02 6:26

Nina, how about you? What was your first time?

SPEAKER_00 6:30

I have a little bit of a different situation because I was brought up in a very, very progressive household. Like, non-religious at all, like in Germany. So, like, I've never, like growing up, I never felt that there was a difference with genders in healthcare. Um now that might also just be because I was a little bit ignorant that there was a discrepancy and I never recognized it as such. The first time I felt that I wasn't being heard and was being overlooked was when right after I had my child, because I felt something was wrong with him, basically as soon as I had him in the recovery room, and I was being dismissed like every time. I I brought things up multiple times, and I'm kind of used, I tend to speak very confidently, and I tend to know what I'm talking about. So for a lot of my life, I have the experience of being underestimated, but then immediately taken for full as soon as I open my mouth, because people recognize that, you know, like they're they can't push me around. But in that environment, I was being dismissed. I was being treated as oh, she's a first-time mom, she has no idea what she's talking about. Like, you know, just leave and be. They didn't even take notes of the things I asked for, which I found out later on when I asked for all the hospital notes after my child was diagnosed. Now his father, there was nothing coming from his dad. So I don't have a comparison as to whether he would have been taken more full if he had brought up the same, the same things because he just didn't.

SPEAKER_02 8:08

But even without that comparison, you knew that the way you were being treated. And with both of you, it's like these are reproductive issues, right? I mean, these are both settings of like these are women's issues that women should be able to decide.

SPEAKER_00 8:22

Yeah. And in my case, these were females that were dismissing me. Like they were female nurses, they were female lactose, you know, lactose consultant uh lactation consultants, and they still brushed me off as first-time mom. And I was like, you know. Now, some of the treatments in the hospital, I have come to recognize it as this is something that a lot of people get treated that way. Like you're in the room and everybody knows what's going on except for you. But I've seen the same thing happen to my boyfriend when he went in for, you know, an appendix issue. So I don't know if that is a gender thing, but I've seen horrible mistreatment of a friend of mine who literally collapsed on the subway one day, had to go to the ER, and they would not do any testing until she peed in a cup, but she was so dehydrated she couldn't. They left her on a stretcher for hours until a nurse finally saw her and was like, she's going great, like something is wrong. And it turns out she had a ectopic pregnancy that had ruptured. She was bleeding to death in her own abdomen, and nobody took her like for full when she said she was in pain. Now she was female, she's a she's a very sweet, very like agreeable person. And she also happens to wear a hijab, which probably didn't help either. So they almost let her die on a stretcher in the waiting room because nobody would listen when she said just how sick she was feeling and like how everything hurt. And yeah.

SPEAKER_02 9:56

So let's just layer the like racism on top of the misogyny and make it even worse, right?

SPEAKER_00 10:01

If you're a woman, it's bad, but if you are a brown woman or a black woman or a woman that is identifiable for a religion, whether it's being like Hasidic Jew or Muslim, like there's an added layer on top of it that unfortunately happens.

SPEAKER_02 10:19

And you said something I'm gonna want to get to later, which is it doesn't always help if the providers are women, right? I mean, you would think it would, and sometimes it does, but the system is still the system, right?

SPEAKER_00 10:31

It's been it's been ingrained for such a long time. Right. That the men are the ones in charge, the men are the ones who know what they're doing, that even other women may not necessarily recognize their own prejudices.

SPEAKER_02 10:46

Yeah. Agree with that.

unknown 10:48

Yeah.

SPEAKER_02 10:49

Fallon, how was your first time with this?

SPEAKER_04 10:52

Well, so my background is I was in the military, active duty in the military, and so as a woman in the military, like my first ship I was on in the Navy was all male crew because of the way it was built. So there's only female officers on board. So at a time there was maybe five of us out of 300 people that were female. So starting from 21 on, just the amount of sensitivity I have to the disparities in all of that between men and women. But I was gonna use Lara's example because my husband and I had a very interesting conversation about exactly that topic, his vasectomy versus my offer for tubal ligation. But since you already did yours, I think it's my it's probably not the first, but I think the most striking example to me was I was on a ship. I had been stationed, I had gotten pregnant unexpectedly. I came back to the States and had a miscarriage in a hospital year. I went back to Japan and I was gonna go back to my ship because, you know, back to duty. And I was in an appointment with so the squadrons or the like the ship command, like uh command departments, I'll just say that the ships report to have a doctor on staff that deals with like helping with like medical issues that come off of the people in the ships or in the squadron. And he had me in his office, which should be tantamount to an examining room, was talking to me about how I was feeling. He was trying to see if I'd be fit for duty because the ship was getting back underway for like weeks. And I was in my discussion with him, and my ship captain walked into the room without knocking, and basically in the middle of my exam, like was just I wasn't being like examined, but like we were talking, was like, so is she gonna die or not? And the doctor was like, Well, I mean, hard press, I'd have to say no, she's not gonna die, but it might not be the best idea for her to get back in her way. Mind you, I had had this miscarriage, which resulted in a DNC. It was horrible. I like very nearly was at blood transfusion level a week ago. So I'm still hemorrhaging at this point. And like, still like I'm literally like nearly gray because I I have I'm like, I'm ready to pass out. And like my doctor got asked by my boss, like in an exam, if I was gonna die or how I was feeling. No, no regard for how I was feeling, no question to me about my health and how I felt, and could I stay awake, could I safely get on board and operate a ship or lead people or make crucial decisions? Just like write to the doctor and then see you in a couple hours and then write back out to the like right back out of the door. And I was thinking there was no way for any issue they would have barged in on a man's appointment about their prostate exam or their prostate cancer or their not that the two are are equal, but like uh their, you know, whatever their issue was in the middle of their exam with the doctor. Absolutely zero change. It never happened. So that's probably for me like the most striking example of like like there was no discussion to me in that room at all. It was between those two men who have never experienced a miscarriage or even a period, right? One of them wasn't even married, so he hasn't even been had the example of being a man who's had a child, like like he's not married and he hasn't had a child, like had a child. So he's never even been around a woman who has had a child, and somehow the two of them were more qualified to discuss my physical well-being than I was, which is just to me, still rings out to me as like the most astounding, like blatant medical experience I had.

SPEAKER_00 14:58

They treated you like a commodity rather than yeah.

SPEAKER_01 15:02

Yeah.

SPEAKER_02 15:03

That's probably what it felt like.

SPEAKER_04 15:05

She's a good worker, ergo, like that's her value. That's more important. And what made it worse is that like in addition to that, there was no ongoing checking of like how I was feeling. And when I I was placed on like a really aggressive like watch schedule where I had to be awake every every night from like 2 a.m. to 7 a.m. every day. We were on like a fixed watch rotation. And then uh like in between, like there was no time to take naps. And so I'm literally like literally almost passing out. And when I tried to go, they were like, Well, you just need to, you know, we're we're all here, we're all on watch, you're back to work now. You need to there was no consideration of like it was all viewed as like me trying to take it easy or me trying to trying to like, you know, I don't know, it just mind-blowing.

SPEAKER_02 15:53

That's horrific. Horrific. Laura, you had also, just to take it out of sort of reproductive health for a second, you had talked about how you and a friend of yours, a male friend of yours, presented with identical symptoms. Could you talk about that?

SPEAKER_05 16:08

Yeah. And I mean, he's in Boston, so that's a much more metropolitan area than me here in suburban Iowa. But the fact remains that he went to the doctor presenting with an ocular migraine and a pain in the neck. And that's what I originally when my migraines and everything from my TBI started kicking up. Um, that was my original thing that I went in to the doctor for. I had ocular migraine every day, and I had this pain in my neck. So the difference is the urgency with which he was treated. He was sent to the emergency room and they ran all of the tests to rule out anything like big, bad, and scary. Whereas, like me, it was like, we're gonna keep an eye on that. Let's get you in. Like they did try to get me into specialists and things like that, but it was months before anything was done. And I just thought that was like, I'm very glad. I want to say I'm very glad that my friend got the treatment that he needed. And it's not, I know I f think that we all feel that way. Like we want the men in our lives and the other men to have good health care and be treated, but we want to be treated as well, you know, that's what it is.

SPEAKER_02 17:22

You're making like a huge point, which is we're not asking to be for better treatment, we're just asking for equal treatment.

SPEAKER_05 17:29

And I think that people get confused with that. I think people don't really understand that when women are saying, Hey, we need to be heard, or even people of color, you know, any of these things. People who are marginalized, they're we're not asking to take anyone else's things away. We don't want to take away anybody's power, we don't want to take away anybody's health care. We just want the same, you know? Yeah, exactly.

SPEAKER_04 17:56

Okay. Oh, sorry. No, no, no. Oh, I was just gonna say, I I actually I was talking to my husband this morning about coming into this discussion, and we were having sort of the same talk, which is, and I was saying, look, I I of course want you to get great treatment, and and this is not something I think is the fault of individual men. It's like what you've talked about, which is like it's a whole system failure, which you refer to in rupture a lot. And he said, No, I I acknowledge he's like, I have a tremendous amount of privilege walking into any doctor's office compared to what you have, and it makes me furious. But at my level, what am I gonna do? Like, don't treat me for anything until you treat my wife. Like, that doesn't help the medical system.

SPEAKER_02 18:37

No, but at least he acknowledges it. And like we all see it, like we all see it all the time. Nina, I want to ask you this question first because because of the your experience with knowing that something was wrong with your baby and not having anybody to listen to you, is like, what does it feel like? Like in your in your mind, in your body, in your soul, like when you know that something's wrong and and people just aren't believing you.

SPEAKER_00 19:02

It feels like you're losing your mind because this was a situation where like I normally I rely very heavily on my gut feeling. Like I'm very good at looking at a situation and interpreting it correctly. So when I saw my child stretching his neck and staring at the ceiling with his mouth open, I was like, this looks like a seizure. Like I'd never seen a seizure on a baby, but I looked at this and I was like, the only thing I can come up with that would do this is a seizure symptom. So that's the first thing I asked. And they blew me off. They were like, he might just be stretching his neck, he may have acid reflux, like he's jittery out of the womb. Like, just blew me up. For three days, I kept like these movements became more and more pronounced, and I kept bringing it up. I found out later they didn't even put a note in my file about the fact that I'd asked about this. And I felt like I was losing my mind because I was like, normally in my entire life, I've always been very assertive. I'm very good at judging situations and you know, like making the right call. So having the nurses and the doctors just kind of like, she doesn't know what she's doing. It felt very helpless because, like I said, like normally my experience has always been like I'm a very forceful personality. So like I can push through. I would never do well in the military because I would not keep my big fat mouth shut if somebody tells me like that's why I I can't. I have been told that I am a terrible follower, but a very good like root leader for this reason. So like being in that situation, like I just had a C-section. They basically stayed put my navel to my kneecaps. Like, I can't do anything, I can't leave this damn bed. Like, and what happens? Where are the cocktails? We need cocktails.

SPEAKER_04 20:49

So this discussion I feel like needs to be over a cocktail or at least a stronger cup of coffee.

SPEAKER_00 20:56

So I'm like, I'm like, I, you know, like I can't really leave this bed without pain. So like I'm reliant on the people that walk in and out of this room. And, you know, then coming, you know, like finally, and I'm like, I was being manhandled by the lactation consultants because my baby couldn't laugh. Because guess what? He was having seizures that nobody acknowledged, you know. So everybody was very dismissive. Like the nurse kept telling me not to give him too much formula, which turned out was wrong later on. Like it's it's like everything kind of conglomerated. But I also then spent a lot of time after he was diagnosed, you know, like he's in the NICU, hooked up to all the cables in the world. And nobody's telling me, is he gonna be here for three days or for three months? Like it felt very, very helpless. And it wasn't until I kind of resorted back to my like, I want to talk to whoever is in charge now. Freaking now. After three days, I was like, I'm done. Whoever is in charge of this whole thing needs to come into this room and freaking talk to me. And that's when I finally, like, the attending doctor finally came in and was like, okay, I'm here. What do you need? And I I was like, I need to know what needs to happen before my child can go home. I was like, tell me like the good, the bad, the indifference. I don't care. I need to know what's going on. And then he finally gave me a straight answer. And I was like, okay, that's better. Now I have something to do. But it took forever before I got to that point where I put my foot down so hard that they had to do something.

SPEAKER_02 22:21

But that's a lot of work to have to do, right? I mean, especially at this moment where you're not you're compromised in every possible way, and you have to do all of this work. Yeah. And they made you feel like you were crazy.

SPEAKER_00 22:32

Yeah. And it would have been so simple. Had I said at the very beginning, getting my child into the room, I feel like something is off, they could have taken him into the nursery right then, hooked him up to the monitors right then, and alleviated my worries. They did not. They dismissed me. They had the dismissal paper signed already on day three when a lactation consultant finally came in to see what they told me was probably just acid reflux and immediately ran back out and get the attending doctor because yeah, it wasn't. You know, so it if somebody was more considerate and believed the patients more and actually like gave us the benefit of the doubt and just checked instead of dismissing. I know my son's health outcome would have ness not necessarily been different because he already had the stroke in utero. However, they let him sleep in a cot next to my bed with no monitors for three nights. The main symptom of that stroke and of those seizures is apnea episodes. My child was holding his breath till his blood oxygen dropped to such dangerous levels, he could have died in that cot every single night. And it was sheer dumb luck that he didn't the first three nights.

SPEAKER_04 23:49

Like so I I would add, um, I have a hot if it's okay, I have a hospital like intuition thing. I know we can, and I have examples outside of reproductive, but when I was giving birth to my first son, I had been in labor at that point for like almost like 50 hours. And I was telling them, like, this isn't working. Like, I I know my body, I know what's happening within my body. And I was like, I was like, I'm I'm not experiencing pressure, I'm experiencing pain. And I had a female nurse in there who was like, no, no, no, you're not experiencing pain. That's just pressure. Like, we gave you medicine, and I was like, I don't think your medicine worked because I'm experiencing pain, like real pain. And I got to the point where I was like literally falling asleep between having contractions, and I was like, this isn't working, this baby is not gonna come out. Like, I finally was like, I was telling my husband, like, I quit, I give up, and and they wouldn't do anything, they just kept leaving the room. And finally, the next time the nurse came in, my husband stepped in front of me, and only when he said, I know my wife, she's extremely strong with a high pain tolerance, and she just told me who never quits anything, and she just told me she quits and she's in pain. Go get a doctor and get this baby out now. She's done. Yeah, and then they went and got my dun had to do it, but your husband had to do it. And thank God my husband was like that because I was like, Don't say it, I'm not weak. And he's like, Shut up, like, please, like, just let me do this. And it's infuriating, but I I've been I I'm like in horrible pain and I couldn't even like stay awake long enough to do this. And the doctor's like, Yeah, he's he's pretty turned around and he's pretty like bent sideways in there, like, it's probably the right time to do it. Like, it's been 50 hours, you know. So, like, and he was fine and he was healthy, but like the fact that my husband had to step in front of me and be like, I know my wife, like, and I know what she's saying right now, and you're she's done. Go get a doctor. Like, why did it take like I'm the one living the experience, right? Ah, yes. And it could have been birth, it could have been a heart attack. Still, the thing is, I'm I'm living an experience of a feeling in my body, and it took a person not feeling that experience, who's a man, to say no, who doesn't even have the right parts.

SPEAKER_02 26:08

Wait, Laura, I want to get to you, but I do I'm gonna have to intro introduce a brief, my reproductive anecdote experience with this, too. So I was having my daughter, so my second child, and uh, you know, I went to a practice that had, you know, a bunch of docs, and you just got whoever was on that night, right? I mean, not necessarily the one of your choice. And the one that I got that was on that night was a very orthodox Jewish man. And I'm Jewish, so understand it's coming from that perspective. He wouldn't talk to me. Everything was all the messages were ferried through my husband, my first husband, not my current wonderful husband. And I would say, I would say, it would go through Paul and back to me and find, and Paul would come back and say, Oh, the doctor said, you know, X and Y. And I just looked at him and said, You tell him that if he wants to talk to me, he needs to get the fuck into this room now. But again, I mean, it was just in New York, big New York City hospital, you know, we're gaslit all the time. I mean, you're made to feel crazy. We're made to feel like we we are being gaslit. Like a man has to explain to another man, otherwise, this can't be understood. Like we're some kind of foreign, strategic crazy, some kind of foreign creatures who can't be understood by men, which is really a problem of men and not us, and we know that. But it's just I I can still my daughter is 31, and I'm just telling you that anecdote. I'm filled with the rage that I felt that day 31 years ago, and like comes right back. Laura, how did it make you feel? Crazy? Angry?

SPEAKER_05 27:40

Yeah, like just not to not like you guys were saying, to not be believed for something that we are experiencing, like in our own body. Like, are we too pretty to listen to? Like, what the heck is going on here? Like, why don't why yeah, why why can't we be believed? Like, that's really all that I think that anybody needs. And I know that now, nowadays, I think everybody's kind of feeling it a little bit more than uh we used to, like men and women alike with the healthcare industry and just not being heard and not being listened to and not being treated. But again, like going through a man. I know, like I had that with when I would go to appointments with my husband and things like that. It's just so strange to be sitting there and to not be acknowledged as a human being. Like you can't talk, like what you said, you can't talk to me. Like it's crazy.

SPEAKER_02 28:39

Just talk to me, right? It's and the and this isn't ancient history that we're talking about, right? This we are not talking about this from a different time that was more patriarchal. I mean, we're all talking about sort of current era stuff, and it's like we're also backsliding now, too. I mean, societally, we're backsliding from like our daughters have fewer rights than we do. Which is okay, let's talk about pain. Because pain is uh is an area where a lot of women feel like they're not believed, and like when we ex and Cavalon, your example was perfect. When uh a nurse tells you, Oh no, that's not pain, that's pressure. As though you don't know the difference. I'll see what happened to me too. Talk about it.

SPEAKER_00 29:20

When uh when I was in labor with my son, we didn't know, like I had a female Ubi there at the time, and she first of all, when I called, I woke up at three o'clock in the morning in labor pain. Now this is my first child. I have no idea what's going on. So I called them up and I had timed my contractions, and my contractions were three minutes apart, and they were like 20, 30 seconds each. But she brushed me off. She was like, You're just an early labor. Like, call, like she's like, you know, if you can, you know, if you can talk on the phone, like it's not a big deal. She's like, just wait it out and call me when like you can't talk through a contraction anymore. And I was like, okay, I guess. Like I'll live, I live a half hour away from the hospital. So this is not just a come take a jolt around the corner. So I took a shower, ow, ow, ow, I put on my makeup, like, and I sat on the sofa and I watched a TV show. And at some point I was like, this is really bad. Like, what the heck? So I timed my contractions, and they were 45 seconds, like every three minutes. So I called her up again and I was like, this is what's happening. And she's like, Well, yeah, I guess you could come to the hospital now. It was a haze of pain. Like it my my ex took about two more hours to get ready and get out of bed. So I was driving, like holding on to the O-Sheet handle for dear life because like every bump in the road was killing me. I showed up at the hospital, like every woman who's ever given birth in a TV drama just screamer. But I was in so much pain. They were like, Oh, would you like to fill out paperwork? I'm like, I want a body, I need paperwork. Just I was I collapsed on the floor trying to get into my hospital gown because the contractions were so hard. When she shimmied into the room, she checked me out. She's like, You're six centimeters dilated already. And I was like, Because apparently I have a high pain tolerance. And I slept through my early contractions, but she didn't believe me. And then when they gave me the epidural, another thing that happened with my body is I'm a natural-born redhead. So I'm lidocaine toler like I'm very, very resistant to lidocaine. So the epidural helped, but I still had full function of my legs. When we had to go to a C-section 13 hours later, which I had to call, they tried to give me the full epidural. And they were like, they do do like the scratch test on your stomach to see if you're numb. And I was like, nope, I can feel that. She's like, Oh, you're just feeling pressure. I'm like, nope, it feels like the tip of an exactoblade across my stomach. She was like, that as soon as I like described exactly what it was, they believed me. But the initial, like, oh, you're just feeling pressure, I'm like, no, it feels like the tip of an X-acto blade going across my stomach. And then you feel the cold trickle down your back. And then they tried again. The resistance from me was so strong that by the time they had me knob, I was shaking like a fish out, like I was flapping on the table like a fish out of water. And they still, they were very dismissive. Like I told them I was like, I am going to crack my own teeth because my teeth were shattering so bad, I couldn't control my jaw. And they finally like shoved a roll of gauze between my teeth so that I wouldn't break my own teeth.

SPEAKER_02 32:31

But like dismissiveness is Well, yeah, I want to stay with this for a second because Laura, I know that you also had experience with like being your symptoms being minimized and disbelief and attributed to other things, more psychological things after your your brain injury. Could you talk about that a little bit and what that experience was like?

SPEAKER_05 32:49

Yeah, and what that you said something about like women doctors, and I one of my doctors, one of the specialists that I went to, the neuropsychologist that I went to, she was a woman. And I was like, oh my gosh, I'm finally gonna get some help because everyone else had kind of been like, we don't really know. We're just gonna I don't know, whatever. So anyway, so the neuropsychologist was a woman, and I felt so relieved. I was like, I think she's gonna help me. And during the whole appointment, it really felt like she was trying to advocate for me and trying to help me. And when I left that facility after the testing was done, she pulled me aside and she said, I'm gonna have your test results in three weeks. If your neurologist doesn't get back to you, you give me a call. I will get you your test results. And I'm thinking, thank God, like I'm gonna have something in my hands. And she must be telling me this because she sees what is going on and she sees that this is not just in my head. I'm not just experiencing PTSD. This is like a real cognitive thing. I mean, I took these, I don't know if you guys have ever been to a neuropsychologist, but some of the tests that you do, it's all like it's memory-based and things like that. And I fucked that shit up like so hard. I was like, Head injuries totally, we are not good at that shit. No. But yeah, there is zero way that this woman's gonna look at this and be like, eh, I think she's fine. And then I get the test results in the mail because of course I had to call because my neurology office just does not do anything great for me. Anyway, so I called and I got the test results mailed to me. I was terrified to open it because I was sure that it was gonna say something like, You have early onset dementia. My God, what is wrong with your memory or something, you know? And I opened it up. This woman that I thought was going to help me, she mentioned how I got emotional when I mentioned the accident. She had wanted to know about the accident. She got emotional when she spoke about the accident. Really? Did I get emotional when I talked about witnessing the man that I loved dying an extremely horrifically violent death? Did I get a little bit emotional about that? I might have. I might have. And then she said that while the tests may be showing that I have some visual spatial issues going on, there's a good likelihood that I'm just grieving. And so she did it. She didn't tell me. I thought that this was gonna be the one. I thought it was gonna be the thing. And nope, you're just a little bit sad, honey.

SPEAKER_02 35:31

I I do think I I think it it does help in general to have more women providers, but if it's still a patriarchal system, if the training doesn't change, if all the other things don't change, then it doesn't really matter who's in the role.

SPEAKER_04 35:45

Right, I agree. Well, also I feel like women have had to be part of a system where you have to best one another in many people's minds to be relevant. And so that thought pervades everything. Like, if I like even doctors who've been through stuff that are female, like as well, like, but if I did it without this problem, you should be able to do it without this problem, or if I've never had this issue, you shouldn't have this issue, right? Like, I think that that probably adds to it, and it's based on the same systematic fault, which is like as a woman, you have to be work twice as hard to be seen as like half or half as good, half is good.

SPEAKER_02 36:34

I wanted to ask you, Fallon, because you have the military experience, also the vet experience. Like you had said something to me about seeing this in some of the stuff with TRI-care, and I know professionally you also know it from like Medicare and Medicaid. Could you talk about that a little bit?

SPEAKER_04 36:50

Yeah, I think what I've noticed on a personal level is, you know, on a personal level, I just have all of the same issues. Like I see the discrepancy in I see the discrepancy in like the care I need to receive and the care that like say my husband or someone I know who is male receives. I think in TRI-care and in the military, I had felt like I had to either mask or hide when I didn't feel well so that I would be taken more seriously on the whole. So then, or go to the doctor and try to like tough through it. Whereas, you know, a man could go and say, like, I'm ill, I need to take the day off, and be seen as like, oh, he's just ill. But for women, it's like, oh, well, they're being emotional. And I got a lot of comments, like whenever I went for an appointment for like sick call in the military. The first question is like, Do you currently have your period? Like, and I get migraine headaches as well. I don't have a TBI, but I get chronic migraines like two, three a month, days at a time. And they started during military service. What? Lauren, I feel you for that. We get it. Yeah. And so, yeah, like the these lights that we have on are like killing me, but for the price of podcasts. But the uh, you know, every time I'd go for like a migraine, like literally I'm like crawling around in the dark because I can't function and I'm and certainly not under office lights or whatever, and I can't stand any sound. And the first question I get asked is, Well, do you have your period? And I was like, But if I was a man, would the first question you'd be asked is, you know, are you feeling any hormonal fluctuations? Are you feeling any testosterone changes today? It shouldn't matter why I have a migraine. If I am photo and sound sensitive and I couldn't drive here, maybe you should just treat me for the pain that I have. And um, I can't speak to, you know, a lot of other people's experiences, but I will say that as a when I was on TRICARE and I was active duty or reservist and I had a plan that allowed me to see doctors outside of the military. The first question I got asked, even when I was in uniform, was are you you're a beneficiary under your husband's plan? Wow. I'd be like, I have a military ID and I'm wearing a uniform. Like, no, I'm the beneficiary, like it's my plan. Always. And you know, when I was and when I was in civilian clothes, definitely, like the first question is, okay, what's your husband's not your sponsor's number, your husband's number? And I'd be like, it's not my husband's plan, it's my plan. And they sometimes they'd argue. They'd be like, Well, you know, I know, but your it's your husband who's the service member that carries the plan and you're his beneficiary. And I was like, No, ma'am, look what it says on my ID card. Like, I'm I'm the person in the military, like wearing the uniform in this picture. That's the kind of like little stuff. And my friend who I had a friend who was retired, and she said that's super annoying because she's retired military, and the first question they ask her for is like, you know, assume that it's her husband's tri-care. And so yeah, so that's always like the the first question you get, and that just goes to show that sort of systemic, like, you know.

SPEAKER_02 40:24

Yeah. I have some data if anybody would like a break for a few data points, okay?

SPEAKER_04 40:30

Ooh, I also looked up data. This is exciting.

SPEAKER_02 40:33

Good, we can go data to data. That's so good. Okay, I'll go, then you go, we we'll just we'll take turns. Okay, so a 2024 study from the National Academy of Sciences found that emergency department pain management decisions disfavored female patients compared with male patients. Coverage of the study reported women waited longer and were less likely to receive pain medication for comparable pain complaints. Right there. And the other one that really I found really scary because, you know, for a while I thought this maybe this is an American problem. It's not an American problem. It's actually even a problem in Denmark. So they it was just, I can't even find the notes, but a long, long, like a latitude, longitudinal study in Denmark, like I think it went on for 21 years, and it covered Denmark's a small country, it covered the entire population, and they found that women were diagnosed later for things that both men and women get. Women were being diagnosed with cancer later, which is terrifying. And it's these pay it is. It is not individual doctors, it's not the providers themselves, it's it is absolutely the systems. But that one to me blew me away just because I did tend to think that, you know, this is an American patriarchal uh situation, but it's not. It's not only us.

SPEAKER_00 41:49

The world has been patriarchal for a time, unfortunately.

SPEAKER_02 41:53

We do need to have another episode on the patriarchy. Laura and I had started talking about it like offline, but I I think that would be one worth doing. But we'll we'll just cover cover cover patriarchal attitudes toward healthcare here, and we'll do a separate one on the whole patriarchy because I think that would one could be really fun. But Fallon, what day did you what day did you bring?

SPEAKER_04 42:13

Related to the diagnosis, the the average age for like for diagnosing autism in boys is five, and the average age for diagnosing autism in females is 31. I was that not diagnosed until I was 42, even though my mom saw, or 43, even though my mom saw signs of it as young as five, because she said, you know, I had my suspicions, but at the time, like there was no levels of autism, which that's changed, like moderate to less and less severe, less supports needed. But also, even even now, all of the models for diagnosis of autism are based on samples of boys and not just boys, white boys. So like disproportionate, if I am at a disproportionate advantage of diagnosis late, late in life as a woman, my black, brown counterparts as women are definitely at a bigger diagnos uh uh disadvantage as are like minority children, because the models are based on the actions and activities of a small group of the demographic. But to me, that's telling because it's creating this negative feedback loop now where more and more women my age are realizing by getting their children diagnosed. For me, it was my obviously white male son that I got diagnosed because I saw signs in him of things that I had always struggled with. And I had the intuition that people ignored for a long time, similar to Nina. And then they we finally got him diagnosed. But now there's this like this this narrative in society like, oh, well, now everyone has autism. And it's like, no, now. We're just realizing that we're building a sample size of other women our age who have dealt with the same problem since they were little, but you we were all told like you're either a beautiful, sweet little girl or you're a problem girl, right? Not that it could be anything else. So that's pretty striking. That's a 26-year diagnostic difference in that condition alone. And I'm sure it's present in other it is.

SPEAKER_02 44:26

And I mean, clinical trials until not that long ago, medications for women were tested on men.

SPEAKER_04 44:33

Well, all clinical that was my other piece of data is primarily. I read a biologist who was in a comment section of something I read. Medication trials and almost all science in general, the sample size is almost always mostly men. Yeah. But they will, they don't have to say it's men's. The only time they say it's men's health related is if it deals with a part of the male-specific anatomy or like the prostate. If it's anything else and it's tested on an entirely an entire sample size of men, they can say it's for the general population.

SPEAKER_02 45:07

Right. Correct. And, you know, I worked at a company that did technology for clinical trials, and we had what every other company like us had, which was a task force that was called DICT, diversity in clinical trials. In the 2020s, that you still have to do that, that you still have to have a task force to try to get more women in trials and more people of color in trials because they're testing drugs on populations that aren't necessarily the populations the drugs were intended for. It's like it's madness, but that's the world we live in.

SPEAKER_04 45:36

It's what's crazy is they won't even do the animal part of the testing on female mice because they don't want to pay for a separate set of trials, a separate housing and facilities for female mice. So like experiments and trials have to go through a long line of succession. It's like small animal trials, large animal trials, and then human. And like they don't even clear small animal trials because God forbid they get another plastic box to keep girl mouse in away from boy mouse versus like disenfranchising the entire, you know, half of the population.

SPEAKER_02 46:17

It's crazy. It's oh my, we could do we could talk about this for hours and hours. We will have to end soon just for time. But let me ask everybody, I want to go around and let me just ask one fine one final question. What do women need to know before? Like, say, say you're talking to someone who is who has never really experienced the healthcare system. They've been fortunate, they've never had to like deal with the establishment, you know, the medical establishment and all that. What would you say to a woman entering the system for the first time? Nina, let's start with you.

SPEAKER_00 46:46

It is okay to advocate for yourself. It is okay to be a bitch if people don't listen to you, because sometimes the only way to get people to do what you need is to get angry and to let the Karen hang out if necessary. It is okay to self-inform yourself before you attend a meeting with a doctor so you can come in informed and know when you're being brushed off. And it is 100% okay to feel like you're not being heard and to say something about it. You have to open your mouth if you want to be recognized. And unfortunately, as women, sometimes the only thing we have to resort to is to get nasty if we want to get hurt. It is not a preferred way of being. It's certainly not something that comes natural to me. But I have learned over time that sometimes the only way to get our voices heard is to be loud.

SPEAKER_02 47:40

Well, and they think we're bitches already, anyway. I mean, the truth is they they already think that. So it's like, let's just lean into this the stereotype because it's already there. Lara, what would you say to someone who is entering our system for the first time as a woman?

SPEAKER_05 47:57

Well, good luck to start. It's exhausting. Oh my God. Take lots of naps, drink lots of coffee. You're gonna need to do a lot of research. You're gonna need to learn how to like speak again, like a whole different language, because you can't just go in and say what's wrong with you to your doctor. You have to like crack the secret code and say the exact right words for them to finally be like, oh, yes, this is the thing, actually. I just feel like I had to learn a whole new way of communicating.

SPEAKER_02 48:31

You you did. And actually, in Best Gazistan, we have a ministry of visible proof because that recognizes that we need to document everything, right? Like man can just walk in and say so and be believed. We need documentation and evidence and all that.

SPEAKER_05 48:45

For months and months. It's not even like you can be like this past week. Now it has to be like a long time. A diary. You gotta prove it. You're gonna you gotta be prepared to prove it.

SPEAKER_02 48:56

Fallon, what would your warning guidance advice be to this phantom woman?

SPEAKER_04 49:02

I want my warning guidance to be doing double duty because one of the things I didn't get to mention earlier on the pain discussion is as an autistic person, I have very poor interoception. So I have a high pain tolerance, and I also have a hard time telling when things are wrong or when I when something is true about my dog. So I either don't have to go to the bathroom or I have to go worse than I've ever had to go in my life. I either am like not sick or I'm running for the bathroom with 105 fever. There is no in between for me sometimes. And I think that's true of other women who like are like me. So what I'd say is close to what Lara said, which is like the hardest thing for me has been finding the right words to accurately describe why I'm there and what the severity really is, without trying to normalize myself to appear like subconsciously appear tough or appear like I've got it all together. Like you should be unhinged and like in pain at the doctor. I'm sorry. Like that's just the truth. Like, you know, but also not emotional, right? If but if you want to just go in with facts, figure out before you walk in there. Like, I I don't know what a one to ten pain scale means. Like that is total gibberish to me. I I don't know how to compromise it. So you know what? I know that you're never gonna get taken seriously if you're less than a six. So if you know that you can't tolerate another day like that, it's six or plus, baby. Like six or better when you go in for that problem. The second thing I'd say is it's okay to refuse certain things. I know that as a woman, they are going to look at that number on the scale when I walk in before anything else in diagnosing my problem. So I've started to refuse weight checks unless they're necessary. And then I'll tell them, like, I'll go step on a scale for dosage purposes. But like, I walked in, the doctor said, Can you need to get a weight? And I was like, why? I'm here because I think I have strep throat. Why do you need to wave me? And the answer was, well, I guess we don't. We'll note it as a refusal. And I was like, fine, I refuse to be weight. Now take me back and examine me. It's okay to say no. And it's also okay, like Nina said, to be straight out and say, I feel like you are dismissing what I'm saying. And I think it's even okay to say, I feel like if they mention your gender, I feel like you're dismissing what I'm saying because I'm a woman. So I would like you to treat me the way you would treat a male patient.

SPEAKER_02 51:33

So basically, what you're all saying is we need to give these women the cheat code. Yeah. Right? It's a cheat code. Here are the things you need to do in order to be believed, which no man would ever have to do.

SPEAKER_01 51:43

And it's mind-blow.

SPEAKER_02 51:45

It's mind blowing.

SPEAKER_01 51:47

Yeah.

SPEAKER_02 51:48

Thank you. Just thank you so much for coming on and sharing these opinions. This is such an important issue. We're not going to solve it. I don't know how we how it gets solved, but talking about it can hurt. And if it just makes women feel less like they're going crazy when they have these experiences and realizing how common this is. And then again, it's not a problem of an individual, it's a problem of a system. I think that's all to the good and that could all help. Oh, hi, hi, Bear. I'm sorry, my dog didn't. But thank you, thank you, thank you. It's him letting me know it's time to go out for a walk. Perfect timing. In a subtle way. Thank you so much. And we have to do that cocktail. This requires more than a strong. Yeah, cocktail hour patriarchy. There you go, discussion. Okay, we'll do we'll do patriarchy over cocktails. How's that?

SPEAKER_04 52:34

Because when Laura was talking a minute ago and said what we need, I was like, are you talking about what we need as women just daily? Or are you talking about going into a doctor's office?

SPEAKER_02 52:43

Because it's true. But thank you all so much. This has been amazing.

SPEAKER_01 52:50

Thank you so much, Wendy. Thank you. Thank you, Wendy. Thanks for joining us for this week's episode of Rupture, the world of best guess is down.

SPEAKER_02 53:03

Today's episode was about gender differences in healthcare and featured three of our favorite returning guests. To support our work, to hear more stories, to hear more perspectives, the best way, subscribe to our YouTube channel. Until next time.