Transcript:

KENDALL CIESEMIER [00:00:01] Welcome to United Bodies, a podcast about the lived experience of health. I’m Kendall Ciesemier, your host. 

There is a huge gender gap and those that experience pain and how pain is treated. More than 51 million people in the United States, more than 20% of adults, live with chronic pain. But 70% of pain sufferers are actually women. To make matters worse, women and trans people, particularly women and trans people of color, are treated poorly by the medical system. Our pain is often ignored. Our needs are unmet. Our diagnoses are late. We are gaslit by doctors, and in turn we begin to distrust them. When we are met with skepticism or denial, told that our symptoms are all in our head, we are less likely to go back to a doctor, often only seeking care in crisis and leaving us much sicker and with poorer outcomes. Our system isn’t set up to care about our pain and therefore our system isn’t set up to care about us. It all can feel so bleak. 

So today we’re digging in and talking about it because only in having persistent and open conversation about how big of a pain our pain really is, will we realize that we’re not alone, it’s not all in our heads, and feel empowered enough to demand change because we weren’t meant to suffer. Joining me to discuss all of this is Samantha Reid, digital strategist at a progressive think tank and sick person who happens to know a thing or two about pain. 

Sam, welcome to United Bodies and thank you so much for joining me. 

SAMANTHA REID [00:01:44] Thank you for having me. I’m really excited to talk about all of this. 

KENDALL CIESEMIER [00:01:47] Me too. So Sam, I just listed off like a laundry list of horrors about pain and particularly women’s pain. And we’re going to dig into all of those horrors. But I wanted to start with the personal. What is your relationship to pain? 

SAMANTHA REID [00:02:04] My relationship to pain is complicated and kind of a long one. I was diagnosed with Crohn’s disease in early 2010, so over 13 years ago. And so I have been living with a disease that is–like flares of Crohn’s are characterized by severe pain. And that is something that is really hard to explain to people. Luckily, I’m on some great medications that keep me in, you know, endoscopic remission for the past few years. But I have gone through long periods of time where the pain from the Crohn’s is a driving factor in my life and what I’m able to do, how I should be able to work, the decisions that I make. 

And I have obviously as somebody who’s been living with a disease marked by pain for over a decade, I have dealt a lot with the medical system and trying to get care for both the underlying disease and the pain that is a result of the underlying disease. 

And, you know, I’m a white woman, so I am not necessarily the most representative of the people who are really feeling the brunt of this. I think, as you mentioned in the intro, people of color and non-binary people really experience this on an even greater scale. But I think that there’s so much, especially over the last seven years or so, I’ve really dug in on both the advocacy aspects and also just the research and reading up on this. There’s so much history. There’s a really rich history of not believing women. There’s a really rich history of systems that are set up to make things worse for women in pain. And there are financial and material and physical things that we lose because of that. And I think that that’s something that doesn’t get talked about enough. So that’s you know, there are so many things I could say without kind of like the short, long answer, of my history living with pain. 

KENDALL CIESEMIER [00:04:05] Thank you so much for that. And we’re going to dig in to a couple of the notes of the systemic issues that you rattled off a little bit later. I want to stick to the personal for now. And, you know, I think one of the things that we find in in trying to care for ourselves as women, as women of color, as trans and nonbinary people, that it’s really hard sometimes to get people to believe you. And therefore it going to be really hard to get a diagnosis, especially when things don’t line up perfectly or there are murky answers or murky results. What was getting a diagnosis like for you? 

SAMANTHA REID [00:04:49] You know, it’s funny because whenever I tell my diagnosis story, I start off and I’m like, I’m really lucky because it only took about a year and a half to get a diagnosis. And that is a symptom of the fact that I know how horrible the health care system is, that I feel lucky that it only took like 18 months to get a diagnosis because for many people it can take years and years. And I think as a kid, you know, I’m from the Midwest. I grew up in I really like blue collar rub-some-dirt-on-it kind of family, which is great in so many ways, but meant that I was ripe for not getting the health care that I needed quickly. So it took a long time. There was a running joke when I was a kid that I was a hypochondriac, and my response was always like, Are you a hypochondriac if you’re right, every time?  

KENDALL CIESEMIER [00:05:44] Ohhhh… tattoo that on my body. 

SAMANTHA REID [00:05:46] Like, at that point, are you just unlucky or very sick? I’m like, Is there maybe a better word for it? And so that background all added up to me being 17 years old and suddenly just not being able to eat like really much of anything. I think I really my family started to really notice it was a problem when I wouldn’t, like we would make plans around the fact that if I ate anything, I was going to be in immense pain like very soon after. In hindsight, I probably presented very much like I had an eating disorder. But I you know, I think that, and this is something I’ve talked about with therapists and with doctors in recent years that, like there is disordered eating and then there is an eating disorder and that a lot of people with Crohn’s and colitis have full blown eating disorders, but a lot of them also just exhibit disordered eating behaviors because when you eat food and it constantly hurts you, you stop eating food. And that is like, very tricky… I was having this conversation with my therapist yesterday about like normally when someone has a panic attack, it is like because of stimuli that they have created in their mind. And like if I have a panic attack because of something related to my illness, it’s like the stimuli is actually there like it’s not a thing I’ve made up. The threat is real. So by the time I hit senior year, I was pretty much existing on like saltines and ginger ale. This is also the era of Jamie Lee Curtis on Activia commercials. Big time, big moment in time for Activia. So I was eating a lot of Activia and a lot of Fiber One bars, which now in hindsight probably didn’t help because like it’s hard to– like it’s hard to digest fiber when you have Crohn’s. So I was like maybe making it worse. But anyway, so I think the biggest hurdle was convincing my family and myself that I was really sick and that this wasn’t normal. And then once that happened, the actual diagnostic process wasn’t terrible. I went to the GI. They did not think I had Crohn’s disease. They thought that I just had IBS, like a bad case of IBS. And so we essentially did a colonoscopy because there is no real way to diagnose IBS except for by way of eliminating other things. And there may be now, I don’t know, I’m but I don’t think that there is. I don’t think there is. So we did a colonoscopy basically to rule out Crohn’s and colitis, and I came out of the scope and they were like, “You do have Crohn’s disease.” And so that was the process for me. It could have been a lot worse. I think I dealt with a lot of like internalized, not believing myself. So that was my my diagnosis story. And then I was on medication a number of years and then as of 6 or so years ago I switched to a biologic. So the Crohn’s is fairly well controlled. There have definitely been moments within that the last 13 years where I have had flares, where even with the diagnosis, it’s hard to convince people that you’re feeling pain, which is shocking, but like true. I now live in a very, things are things are better now, but I still even like if I were to wake up in pain tomorrow, it would be a calculation in my brain of like, is this worth bringing to my doctors? Or like, I think there’s like a scale of pain that is like, is this bad enough to lift to the powers that be? Because you have to as particularly someone with a chronic illness that’s never going away, you kind of have to choose your battles. And so which is sad, but it is, I think, true. And so I try to be thoughtful about how I manage my pain and what I can do myself before bringing doctors into it, because there is a real stigma with being someone who is frankly complaining too much in the eyes of the medical system. 

KENDALL CIESEMIER [00:09:54] Oh my gosh. There’s so much there already to go on. And so much there to say. So I want to pick up a couple of things that that you just mentioned, one being this tension between the mental and physical. Right. When you are experiencing physical pain that in and of itself is very distressing and can actually impact our mental health. And one of the main retorts that I think people get and are made to feel is that their pain is all in their head. Right. And so when you mentioned the kind of skepticism around, oh, is this an eating disorder or is this disordered eating? Because eating was painful, so clearly that’s why you would avoid it. But I find that to be a really difficult piece of experiencing physical pain. And even when you talked about anxiety from a stimulus that is actually real, that exists outside of you, I think that’s also really difficult. The reason that medical anxiety or medical trauma, if you will, is really also very difficult to live with because, you know, hypervigilance or, you know, having a strong reaction to a physical symptom can actually save your life. If you’re someone who has lived with a chronic condition, you know that the possibility for something to be bad is actually not unreasonable because it has happened before. So how do you, and, you know, this is a really big question, and I certainly this is something I deal with all the time and don’t have an answer to. But I’m just curious if you could dig in a little bit more to like, how have you navigated the tension of mental health and physical health when it comes to pain? And, you know, if you ever felt like even admitting mental health concerns or problems would make people believe your physical pain less. 

SAMANTHA REID [00:11:59] 1,000%, it’s terrifying. I think that mental health issues, mental health struggles go really hand in hand with physical health struggles. I don’t think you can really– I don’t want to say you can’t have one without the other. But like, show me that extremely well-adjusted person. I would love to meet them, because I think having a chronic illness, it really changes the way you operate in the world, even if you don’t want it to you even if you’re really that’s the people are always like, Oh, you talk like, is it an issue that people like talk about being sick so much and make it as part of their personalities? And I’m like, honestly, I’m just talking about it the amount that it is in my life, like it is in my life every day and so I talk about it. 

KENDALL CIESEMIER [00:12:44] I think that largely people talk about it less than it’s in their life. 

SAMANTHA REID [00:12:50] So much less. There’s so many times that I’m in pain and I would love to just. 

KENDALL CIESEMIER [00:12:54] Yeah, like I talk about it this much compared to like, you know, how much I experience it. 

SAMANTHA REID [00:13:00] Yeah, there are so many times when I’m in pain out, like with friends, I don’t say anything because I don’t really bring down the vibes. Like if I was really talking about it to the extent that it was in my life, like that would be annoying maybe. 

KENDALL CIESEMIER [00:13:12] I mean you’re just telling yourself, ignore it, ignore it, distract yourself. 

SAMANTHA REID [00:13:16] Exactly. So, yeah, so I’m getting but I think that that having an illness that is never going away is a big trauma. And you’re allowed to like, feel like that’s a big trauma and you don’t have to minimize it or let other people minimize it. I was diagnosed when I was 18 and when I was 19, I had like a real, probably the worst year for my mental health in my life. I was like, wouldn’t leave the apartment like a very like I had panic attacks almost every day. I was I truly wouldn’t leave the house. And I was talking to a therapist at the time who was was the first one to introduce the idea. I had not put two and two together that any of this would be connected to the fact that I had just been diagnosed with a disease that was never going away, and she was the one who kind of made the connection of like, you just had this very big thing happen to you. You are not coping with it. And maybe that is why you are feeling like it’s not safe to leave your house and like it’s not safe to be around people and that, you know. And so I think that that is it is a huge being sick in general without the gaslighting, without the people not believing you, is traumatic. And so having really good therapists in place has been essential, having really good friends, and family and community, but also, like you are not going to be given–no one is going to fall into your lap who’s like going to know how to handle this well. So also understanding that I have to tell the people in my life how to handle this well, which I think is hard and like, you know, in the movie is everyone just has the right response and knows what to say. But in real life, people don’t know details about Crohn’s disease and they don’t know what to do and so having people in my life who are willing to listen and learn and read things and hear more about what it’s like, I think has been huge. But then also just navigating the mental and physical tension is really hard as people in general, but I think women and also women of roughly our age who were raised in the Midwest, there is something. 

KENDALL CIESEMIER [00:15:34] Hey, our circles, our concentric circles are just like all we’re just in the middle. 

SAMANTHA REID [00:15:39] Literally. 

KENDALL CIESEMIER [00:15:41] The two of us. Hilarious. 

SAMANTHA REID [00:15:43] So we’re just the two of us are just two young women from the Midwest, millennial women from the Midwest. And I think this is not specific necessarily to that Venn diagram. There’s a ton of other people who experience this as well. But like the real training early on in life, to be a people pleaser is a huge detriment in medical settings. I was in a hospital once and a nurse came in and said, “How are you doing?” And I said, “Good, how are you?” Like I was in the emergency room and my response to “How are you doing” is “Good, how are you?” Like, that’s bonkers. Like, I’m not doing good. He’s a nurse asking how I’m doing medically. I don’t need to be like, “Good, how are you?” But that is the instinct. And so I think that then makes it harder because when medical professionals don’t believe you, if you are already a people pleaser and already someone who’s like, hypervigilant about making people feel comfortable when someone says, No, I don’t believe you, you know, you can’t have that medicine. No, you can’t have that treatment. It’s your instinct to be like, okay, like they’re the authority. I just have to listen to them. And so I really had to train myself out of that. People always say, You’re your own best advocate. You’re your only advocate. Like, you know, you might have family and stuff, but like, we’re adults, like you are your only advocate if you trust everything. Like, not that you shouldn’t trust people in positions of power, but like having that fair amount of questioning. And like, I think when I was a teenager, if a doctor told me something, I was like, yes, that is gospel. And now I’m like, oh, this is what they know. 

KENDALL CIESEMIER [00:17:16] Yeah. Oh man. I first off, think that you shouldn’t be hard on yourself for naturally having these responses of like, “Good, how are you?” Because I have to tell you, I’ve been sick my whole life. And I knew as an teensy tiny little child that the more the doctors liked me, the better care I would get. 

SAMANTHA REID [00:17:37] Yeah. 

KENDALL CIESEMIER [00:17:37] And so to be the good patient, to be the right kind of person to appeal to their you know, I’m not so different from you. You’re like me. We are the same. To make a bridge of empathy, like build a bridge of empathy so that people in the medical field care about you and are willing to do what you need them to do. I mean, my God, that I think it I mean, it’s it’s definitely something that I think has kept me safe in a lot of ways. And I think to that same point, you know, the idea that admitting some kind of mental health condition, I mean, I don’t know how you feel about this, but even within the transplant community, it’s like very clear that we should never have on our charts that we have PTSD or depression or anxiety or anything, because that will make our doctors, number one, take us less seriously. And more natural proclivity to saying that something is in our heads or number two, that, you know, if we ever were to need another organ, that we might be denied an organ simply because of our mental health status. As if having an organ transplant on its own wouldn’t create the conditions for a mental health problem. It’s just I always kind of feel like it’s punishment for survival, to be honest. 

SAMANTHA REID [00:19:07] Yes, that is such a good way. And that’s I mean, literally the other day I was doing my intake paperwork at my infusion. And I have a history of anxiety. It’s not something that I hide in my personal life because I think that that stigma is largely, you know, not gone, but like the people that I surround myself with are not people that are going to be upset that I am public about mental health struggles, but I’m that way in my personal life. And then I’m over here at the infusion center filling out my intake paperwork and it’s like history of asthma, blah, blah. And I check the box for asthma and I did not check the box for anxiety, even though I very much do have a history of, you know, panic disorder. And, you know, I had had prescriptions for Xanax and for other, you know, so like, I definitely have those things. But I was I had the same thought process of I don’t want to put this here because I just don’t want it on medical paperwork that I have anxiety because I know and evolved human beings know that, like anxiety and. Doesn’t mean that, you know, anxiety, depression, PTSD. I also have PMDD. Like, those things do not mean that you are not a reliable narrator of your own pain or your own experience. They don’t mean that you are constantly having a mental health episode. I have the ability to just not check the anxiety box and lie on this intake paperwork. But friends of mine who are fat have that as a reason that doctors will not either not treat them or will treat them poorly or will tell them something is in their head or that they just need to lose weight. There are people of color who, you know, that’s similarly not a box you can just not check. And they are being treated differently because of that. So there are all of these things and I think that’s what’s so tough is I remember getting really radicalized about five years ago, that like the way we fix the system is we like go into medical schools and we like talk to them and we meet them and we tell them that we’re people. You know, like the people that they’re treating are real people. And I’m like, you know, that’s like a little Polly-anne-ish of me to be like, I’m going to go into every medical school and just explain to them that, like, I’m their friend. You know, you know me, you know me. But I really resonate with that desire to be like, if I can just take away whatever othering they’re feeling towards me and make them identify with me and make them feel like they want to help me, which is so terrifying and not how it should be. There’s a really good book called Care Work: Doing Disability Justice, where the author talks about the fact that a lot of times and this happens to me when someone is sick, they eat, they crowdfund either money or support or like some assistance in some way. And like that’s dystopian for a whole number of reasons, but it’s really difficult because it’s like that predicates people getting the care they need on being likable. It predicates people getting the care they need on them being a good patient and being nice and being kind. And so I feel like so much of my, you know, I like it’s literally like I will put makeup on before I go to the doctor’s office. 

KENDALL CIESEMIER [00:22:14] Oh, 100%. 

SAMANTHA REID [00:22:15] But it’s like how much makeup is the right amount of makeup where you’re wearing enough makeup that they recognize that you are a professional in the world who knows things, but not too much makeup that they’re like, well, clearly she feels fine. It’s really a delicate dance. 

KENDALL CIESEMIER [00:22:30] I mean. Right. It’s such a delicate dance. I mean, I yes, I have always and growing up, like dressed for the doctor. Right. Which is that’s a weird that’s a weird concept even, as a child dressed for the doctor. The other thing I think about there is like wanting people to know that I’m smart. And so getting in somehow of like where I went to school or what my job is, I mean, this is I feel ashamed for saying this, but it feels so important in order to be believed. 

SAMANTHA REID [00:23:09] Catch me at the infusion center dropping that I work in drug pricing policy. I’m like, hello. I might know more about some of these drugs than you do. It’s fine. 

KENDALL CIESEMIER [00:23:20] Yeah. So I think the other thing I wanted to pick up on that you were mentioning is that pain is a very elusive concept. Like if you haven’t experienced chronic pain, you can’t actually, like in your brain understand what people are talking about. And I think that’s also a huge part of why it’s so hard to get care for pain and why pain is so usually disbelieved because a lot of pain you can’t see. And it’s the lack of being able to see something that really makes it, you know, you know, we’ve talked about this before, endometriosis, right? Endometriosis is an inflammatory condition where basically uterine tissue kind of grows outside, like scar tissue kind of just grows outside of where it should be. It causes all sorts of issues and inflames around your cycle can make all things really difficult, like periods, sex, etc., etc., etc.. And the hard thing about endometriosis and getting a diagnosis is that they have to literally cut you open to affirm that you have endometriosis. Otherwise, it’s just like suspected endometriosis. If you aren’t willing to let them cut you open to go on a fishing expedition to see if the pain is real. And I think that is something that feels so challenging about pain, about women’s pain in particular, or reproductive health care in particular. I mean, I just feel like we lack meaningful ways to illustrate these experiences of pain. And I have– I’m wondering. I know. You have suspected endometriosis? I have a hunch that I do too. But I also am like, what is it? Does it really matter? Because what are they going to do for me anyway? What do you think about all of that? 

SAMANTHA REID [00:25:24] I’ve had this conversation with several doctors because when you. So I have Crohn’s, which is under the umbrella of IBD. But then I also have IBS, and I also just have what my doctors have been calling for years, like bad periods. And so all of those things kind of scheme together to just give me like a bunch of GI problems. So it’s very hard with any given GI problem to like really know where it’s coming from. And something that several doctors in the last, you know, because I have moved in the last three years have had a few different PCPs, a few different OB-GYNs and it has been suggested to me by a few different doctors that some of my symptoms sound more like endometriosis than just IBS or IBD. But to your point, I have felt very little motivation to get to like dig into that or to dive further into that, because the only way to get diagnosed definitively with endometriosis at this time is excision surgery. It’s very scary and frankly like doesn’t feel like it makes a lot of sense to undertake surgery for something that I may or may not have. And I think I would feel differently about that if I knew that there was treatment on the other end. If I get excision surgery and I take time off work, I get surgery, I recover from surgery. There are two roads there. One, I don’t have endometriosis and frankly, I don’t know that I like. I have thought a lot about that outcome that like what if you go through that whole process and then they come back and say, you don’t have it and then you’re still. 

KENDALL CIESEMIER [00:26:59] I mean, how gaslighting, right? 

SAMANTHA REID [00:27:02] And then you’re still living with pain, but you have like another thing that they’re like, it wasn’t that. So I think that is part of what keeps me away from the surgery is I’m like, okay, what if I get the surgery and it’s not that? And then you’re just telling me that it’s another thing out in the ether that I don’t know what it is. The other road isn’t really any better because the other road is okay, you go from having suspected endometriosis to having endometriosis. Okay, there’s not really much in the way of treatment for endometriosis in the same way that there’s not much in the way of treatment for any disease that mainly impacts women. And so there are, you know, just a ton of women living with this that it doesn’t seem like the ones who have a definitive diagnosis have much better luck getting help for their pain. 

KENDALL CIESEMIER [00:27:45] Yeah, absolutely. And I think, you know, the idea that, like, you could be disproved, that you don’t have endometriosis, I mean, that is just such a mind fuck. Sorry, I had to say it’s such a mind fuck, because you’re in this pain and you’re just gaslighting yourself all the time. Like, maybe it’s not that. Maybe it’s not that bad. 

SAMANTHA REID [00:28:05] Like, it’s the self gaslighting. 

KENDALL CIESEMIER [00:28:07] How do you know if it’s that bad, right? And like, you have to decide yourself if it’s that bad. 

SAMANTHA REID [00:28:14] No, just even thinking through the comparison of, like, when I was really sick, I thankfully wrote a lot when I was really sick and when I was in my flare in 2016, I wrote a lot and I actually have a few videos that I didn’t post anywhere, but there’s like videos I took of myself, like crying or like curled up on the couch. And I was so I felt weird at the time, but I’m so glad I took them because now I look back and I’m like, yeah, I don’t remember what that was like fully. Like, you don’t, even like a day or two removed from pain. I think your brain doesn’t really remember fully what the experience was like, as like, self-protection. 

KENDALL CIESEMIER [00:28:47] Yeah, it’s too much. 

SAMANTHA REID [00:28:48] That’s part of why it’s so scary because you really don’t remember how bad it was until you’re in it. Like even now talking about pain. I’m like, Oh yeah, it was horrible. But it’s all intellectual now. It’s always intellectual until you’re in it. 

KENDALL CIESEMIER [00:28:58] Yeah. And then when you’re in it, there’s this fear. I don’t know if you’ve had this, but that it will never go away, that it’s so all-consuming that it will just never go away. You can’t fathom it being better. And that is its whole own kind of elevated experience, because then you’re putting this mental weight on the idea and adding fear to it. And those things naturally make you more feel more pain. I mean, that’s like just biology. 

But all of this is really reminding me of the recent podcast by The New York Times, “The Retrievals.” It’s about how several women sued the Yale Fertility Center in Connecticut for failing to properly safeguard its Fentanyl supply. And between June and October of 2020, and possibly longer, and Nurse Donna Monticone was found to have routinely stolen the painkiller to feed an addiction. So she swapped the drug, the pain meds with saline, leaving the women who are seeking fertility treatment to fully bear the pain of invasive procedures, as in knife-slicing tissue associated with in vitro fertilization. When the women brought up the agony in the moment, they were often dismissed. It was only after Monticone’s actions were discovered that their experiences were acknowledged, but even then only kind of gently. Whoa. And then you have this conversation and TikTok about, you know, no pain meds for IUD placement when many people say it’s the worst pain they’ve ever felt in their life. Obviously, that’s, you know, a shorter-lived experience, but it’s still deeply traumatic. Why do you think it’s so tempting for people to not believe women’s pain? 

SAMANTHA REID [00:30:42] I think it’s just really tempting even for other women to not believe women in general, which is like a very insidious, you know, I say not to get too political, like I know who I’m talking to here, I can do it. But like, even just I have I have really I have really smart women friends who, during the Johnny Depp/Amber Heard trial like were fooled like we’re like on Johnny Depp’s side and it’s only after some stuff has come out that they’re like, “Oh shit, I was wrong” But I think that the it’s so tempting to–everything in society is built for us to believe a man over a woman. And I think that it just it airs so much–but then you get to it’s so interesting because it’s not just that, like that’s such an easy gender dynamic. 

KENDALL CIESEMIER [00:31:36] Yea, I was going to say. 

SAMANTHA REID [00:31:36] Where you even can believe a man or you can believe a woman.

KENDALL CIESEMIER [00:31:37] When you don’t have a binary. 

SAMANTHA REID [00:31:38] But in in medical systems, it’s often I mean, I’ve been disbelieved by doctors of all genders. I have, you know, like I think that like it is so ingrained into our medical system that there’s a really great book by Maya Dusenbery called Doing Harm that is like I recommend it every chance I get because I think if every woman read that book like we would organize, we would be taking to the streets because it it goes a lot into the fact that the medical system was simply not built for women. And I think that didn’t start in a malicious way or like, you know, it started in the way of like, I guess a malicious way of like keeping women out of life but I think that there’s the better a better way to put that. I think that the medical system was not built for women. And we see that in the fact that women weren’t even required to be part of clinical trials until like the eighties. So medicine that we have that we know the side effects of those are typically the side effects for men. Even the way we’re trained from childhood to identify a heart attack. That’s the symptoms of a heart attack in men. The symptoms of a heart attack in women are really different and vague and harder to identify. But that’s the thing. We just like we are taught: this is how you identify a heart attack for people, but by people there’s an asterisk there. And it’s like men. Those people are men. And so I think that because people in medicine, even well-meaning, lovely, it’s the same way that we have, you know, implicit bias when it comes to race. I think that there are really lovely, well-meaning people that go through medical school and they don’t go out there trying to not believe people. They don’t go out there trying not to believe women. But when you have a system that is so patriarchal, going back to the beginning of how it was created, it’s very hard to break out of that.

I’ve had conversations with conversations with doctors who are lovely, who are like actively trying to break out of that. But I think it’s similar to the conversations that we’ve had where, you know, it is an act that you actively have to do to rid yourself of your unconscious biases and to rid yourself implicit biases. And so that is why I wish there was more continuing education for medical professionals and education in medical school that talks about the differences between men and women and talks about I mean, there’s, I’m going to butcher the actual study that was done. But there was in Maya Dusenbery’s book, she talks about a survey that was done of students in medical school. And a majority of them, like fully believe that there are physiological differences in how Black people and white people experience pain. And these are people in medical school like these are some of our quote unquote, smartest people. And they still believe that. And there’s no basis for that. That’s not true. But if enough people believe something, it doesn’t matter if it’s true. That is what the last, you know, many years of politics have taught us, that if they are if the people in medical school believe these entrenched things and they’re not actively trying to stop it, then like this is just going to keep happening and women medical professionals are going to do this to women patients. And it’s just you know, it’s it really is so ingrained that we have to you have to go to the root of it. You can’t just treat it on an individual level. 

KENDALL CIESEMIER [00:34:54] Yeah. When you have an entire history of racism and sexism and misogyny and transphobia and homophobia, like, you actually have to understand that, like, this is the soup we’ve been swimming in for so long and that even if we are potatoes, we aren’t soup, we’re potatoes in soup. But, you know, sometimes when you eat a potato that’s been in soup for a long time, it kind of tastes like broth. 

SAMANTHA REID [00:35:25] Exactly. 

KENDALL CIESEMIER [00:35:27] You got to actively take ourselves out of that and really understand that this is all historical. I mean, the practice of gynecology started by running experiments against their consent on Black women because they were perceived to not feel pain. I mean, it’s just it’s like unfathomable when you say it right now, but when you acknowledge that that was the history that literally made the entire field of gynecology, like that’s what it was founded upon. Everything was built on this system. And so we have to we have to really undo it all all the time. 

SAMANTHA REID [00:36:04] And I think people people really like having data and they like having a clear answer. And I get that. But I think this would be helpful as if people in medicine would just admit that we don’t know what we don’t know. 

KENDALL CIESEMIER [00:36:15] Oh, yes, that’s a big one. Because I think also it feels really intimidating to doctors when they don’t know how to help patients. And so it’s easier for them to simply just write them off. One thing that I have recently been experiencing in my life is tick borne illness. I got bit by a tick in 2020. I got Lyme disease and other tick-borne infections and the number of extremely smart doctors who just have not been educated about it and therefore just simply do not know. And their proclivity to just outright deny that it exists as opposed to saying, you know, I actually just don’t know that much about this because I wasn’t taught about it because of political controversy that stems back, you know, decades. 

But to just admit I don’t actually know something and therefore I might not be the right person to ask about this, but I’m willing to read and think about it. You know, it’s just it’s it’s honestly baffling to me. And it’s you know, you look at something like that plus the the racism and misogyny that’s that medicine is founded upon. And you’re like, no wonder people don’t tell their doctors when they’re experiencing something. No wonder women die in childbirth from things that were preventable. No wonder people don’t get COVID vaccines. It’s no wonder people don’t, you know, see a doctor until it’s, you know, really bad, because why would you?

SAMANTHA REID [00:37:53] The reward system is not there for you to do that. I mean, I think back just historically speaking, something that I think about a lot is we didn’t even know autoimmune diseases existed until 1930s, 1940s. Up to that point, it just seemed too wild. The idea that, like the body could attack itself just seemed nonsensical to doctors. And so they were like, that can’t be real. And then we find out it is real. And so we have that hindsight now that like of course autoimmune diseases exist. But if we felt that way about autoimmune diseases less than a hundred years ago, what are we going to find out in coming years about tick-borne illness, about other things, and we’re going to have egg on our face and be like, why didn’t we take this seriously. 

KENDALL CIESEMIER [00:38:38] Long COVID. 

SAMANTHA REID [00:38:39] Yes, exactly. Because we are incapable of admitting what we that we don’t know what we don’t know. There are people – it just like haunts my dreams. 

KENDALL CIESEMIER [00:38:48] Which is so funny because I think if you actually even spent any time receiving a lot of care from institutionalized medicine, you know that it’s such an art, not a science, that there’s actually so much that they don’t know. I mean. 

SAMANTHA REID [00:39:02] Watch an episode of House, he’s an artist. 

KENDALL CIESEMIER [00:39:05] Exactly .Exactly. 

SAMANTHA REID [00:39:07] But no, I think that I mean, as recently as the 1950s, the late 1950s, doctors were giving patients with ulcerative colitis, which is like the sister disease to Crohn’s, lobotomies in the late 1950s, because they were like, yes, like! That’s what I mean by like material things. We cannot take back things that damage that we’ve done to patients that we cannot take back because we didn’t believe that they could be in the type of pain that they were saying they were in. 

KENDALL CIESEMIER [00:39:40] Yeah. The other I think, force here that we haven’t necessarily talked about is ableism. I think ableism is so rampant in the medical system, which is ironic because the people who need the medical system the most are people with disabilities. It’s like literally the population. And I don’t know if you’ve experienced this, but I definitely have going to doctors and having a lot of complicated medical history and them saying, “well, I would be able to figure this out if you were like a normal 29 year old.” Like, wait, I’m sorry, aren’t you a doctor? Like, isn’t this your literal job to deal with people who have medical issues? 

SAMANTHA REID [00:40:22] Like, shouldn’t this like, kind of hype you up? Like, I’m an exciting case. 

KENDALL CIESEMIER [00:40:25] Or I always. Yeah, right. No, but you know, the other story that I always go back to and think about, like, so often is that I don’t know if you watch “Crip Camp,” but in “Crip Camp” they tell a story about how one of the women with cerebral palsy went to the gynecologist and had crabs but didn’t get diagnosed and ended up like, I think, getting surgery for something that was unnecessary because she just had crabs. But no one believed that she would possibly be sexually active because she was a disabled woman. I mean, yeah, so that is another force I think is so specific and important to call out. I mean, I think we talked about the ableism that can come from mental health conditions and having those noted on your file. But in general, I think ableism is another huge force that kind of serves to de-legitimize people’s pain experiences. 

One of the things that is so important as we kind of pivot to talking about kind of how we individually can navigate these systems is to just say and acknowledge that like I think these systems and the way we are treated by them can feel really personal. And I actually think that that’s by design. If we believe that all of these reactions to us are personal issues that we have, we are put into shame, we are put into feeling really, really awful and and believing that we don’t actually deserve better and we won’t ask for better if we believe that it’s just a personal problem.

How do you navigate that? And do you ever find yourself slipping into feeling like this is a personal issue as opposed to a deeply systemic one? And what are ways that you’ve found to advocate for yourself and your pain to be taken seriously amidst this kind of tension where you could really gaslight yourself into thinking that it’s just a you thing. 

SAMANTHA REID [00:42:33] Something that I think has changed the entire game, and I think that’s why so many of us are starting, not starting to have these conversations, people have been having these conversations for decades, and “Crip Camp” is a great example of that. But I think the difference in the last 15, 20 years really is the Internet. And I say that as a digital strategist for my day job that like we are able to organize in a way that we frankly just were never able to do before. And I don’t think a lot of patients view what we are doing as organizing, but that’s what it is. And that has changed the game for me personally. When I was diagnosed with Crohn’s in 2010, social media did not exist in the way it does now. I had a Twitter account that I think I mostly used to follow the cast of Desperate Housewives. You know, that’s a moment in time snapshot. But social media really did not exist in the way it does now. Instagram wasn’t a thing. And so I think I in 2016, when I got really sick, I started posting about it online for the first time. And I’ve had Crohn’s since 2010. But if you look at my social media from 2010 to 2016, it’s like nothing about being sick. 

KENDALL CIESEMIER [00:43:45] You didn’t have Crohn’s. Yeah. 

SAMANTHA REID [00:43:47] For public purposes, it was not happening. And so I don’t think that was a conscious decision I made. I just think I was like, it’s taboo to talk about being sick. No one wants to hear about this, whatever. And when I got really sick in 2016, I started posting about it online. And so I think that that has made a huge difference and do start to slip like as a human being. You start to slip, you start to be like, Is this in my head? I have been in immense amounts of pain and still thought it was in my head, like I have had pancreatitis and thought it was in my head. I’ve had, you know, like there are things where in hindsight you’re like, of course I was in a lot of pain, but in the moment you’re like, I, am I in pain? An adult doctor told me I’m not in pain, so I must not be. And I think having those other people who have gone through the similar things and having that knowledge in a way that like people like my grandmother or even people 30 years ago just wouldn’t have had they wouldn’t have known unless they found like a physical support group or something that this was happening to other people. Generally, systems depend on us assuming that this is just us and this is just an us problem and we should just be quiet about it because it can’t be fixed. And there are so many things in the patient community that can be fixed. 

KENDALL CIESEMIER [00:44:53] As we wrap up here, I think it’s important to talk about the ways in which we can both help ourselves in pain and what works for people, and also the ways in which the people around us can help us when we’re in pain. Do you have any tips, tricks, advice, both for ourselves, the pain experiencers, and also the people who love the pain people? 

SAMANTHA REID [00:45:19] Yeah, I think that one of the biggest things––I live alone. So one of the biggest things that the people in my life can do to help me, my independence is really important to me, I think you as well. And so something that’s really helpful is if I’m going through a flare: offering up like tangible ways to help, but understanding that like you coming over to like, hang out with me is probably not helpful, when I have pain. And so like people bringing food, people offering to pick up groceries, all of that is like, great. And as someone who hates accepting help, it’s also great when someone offers it in a tangible way because it gives you the opportunity to just be like, Yes, that’s it. The other way, I think that other people and that I started to find words to express this to my family is when I’m in pain, sometimes I can’t really talk. I can’t really not like, but like it’s not, I can’t talk on the phone. I can’t like… my mom is a lovely human being, but her go to response when something is wrong is like ask a million questions and figure out how she can help. And we’ve had to have conversations where I’m like, when I’m in pain, I can’t answer your questions. Like it is like the level of thinking that goes into like, like complex thought is very hard when you’re in pain. And that’s something that I think people don’t necessarily realize. So like, just like asking less of someone in your life when they’re in pain because they might not be able or that coming to them later when it’s something that you you know, we act differently when we’re in pain, we’re a little sniper, we’re a little quicker to like snap. And I think just like understanding that that comes from a place of pain and not from a place of your loved one not caring about you. But yeah, I think I, as an individual have gotten good at, you know, I’m very social. I don’t isolate myself when I’m not in pain, but I think that when I am in pain, that is like what I most often want and need is like to be alone and sit with my heating pad and my comfort shows and movies that require absolutely 0% of my brain. And like that is when you get to the back to basics, back to fundamentals, like what makes me feel better. And yeah, pain medication unfortunately is such a wrought thing in this day and age even if you have a diagnosis with something serious like Crohn’s disease, it’s so hard to get. So I tend to rely on heating pads and changing my diet and medical marijuana and like other things that I don’t necessarily have to feel like, hi, can I please have pain medication? 

KENDALL CIESEMIER [00:47:53] Yeah, absolutely. If I were to offer up a couple of things that have worked really well for me, I think heat is great, cold is great, baths are great. Epsom salt baths. Movement for me has been really important. Like I don’t mean exercise necessarily. I mean walking. Walking has been really, really helpful even in times when I don’t want to walk, it’s always made me feel a little bit better. And yeah, I mean I think eating is a big one for me as well. 

Sam, it’s been such a pleasure to chat with you.

SAMANTHA REID [00:48:30] So fun!

KENDALL CIESEMIER [00:48:31] I think we could have done a number of different topics. I’m so glad that we talked about pain today and thank you so much for sharing time with me. 

SAMANTHA REID [00:48:41] Of course. Thank you so much for having me here. 

KENDALL CIESEMIER [00:48:45] Thank you so much for listening. You can subscribe to United Bodies wherever you get your podcasts. If you enjoyed this episode, it would be so helpful to us if you would rate and review the show that helps more people like you find us. We’ll be back next week with more. 

United Bodies is a Ms. magazine and Ms. Studios production. The show is created and produced by me, Kendall Ciesemier. Michele Goodwin is our executive producer.