Carmen Cutler talks POTS, fibro, and her graduate research about life with ME.
Hi, I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.
Quick reminder that I recently started a patreon campaign, so if you’ve been enjoying this show and you have a couple bucks to spare, I’d be so so grateful if you’d sign up as a patron at patreon.com/noendinsight.
Today I’m talking to Carmen Cutler about POTS and fibro and her graduate research about life with ME.
Before we start, here’s my disclaimer:
This podcast is not intended as a substitute for professional medical advice, diagnosis or treatment. Make sure you talk to your practitioner about any questions or symptoms.
Brianne: I like to start just by asking, how was your health as a kid?
Carmen: Sure. So I think the answer to, “Was I healthy as a child?” is yes and no. So I… as far as energy levels, pretty average, I felt as a child that… I grew up in the framework of, “I am a healthy, normal person.”
Carmen: But I did get a lot of ear infections, and every couple months I would get a sinus infection. But it was still seen as like, “Ah, kids get sick. You probably caught something at school.” But I was just getting…
Carmen: …ear infections and sinus infections consistently. And I also had eczema, on my hands and knuckles, some sPOTS on my legs, and then right at my elbow. I would get big patches, but again, it wasn’t really… I would put hydrocortisone on it and…
Brianne: Yeah. All things that your doctor would be like, “Here’s a quick answer for… take this prescription, and you’ll get better. Go home.”
Carmen: Yeah. And it was never really connected to any… those things weren’t connected to each other, and it wasn’t connected to a larger, like, “Oh, maybe something’s going on.” It was just seen as like, “Oh, this will pass, and you’ll grow out of it.”
Carmen: …kind of thing.
Brianne: Yeah. Yeah. And ear infections are so common, in people that I talk to, but also I remember that as a kid that there were some people who just had that… recurring ear infections or get tubes in your ears or whatever it is. It’s just a thing.
Carmen: Yeah, and I do remember waking up in the night, and I viscerally remember what that pain felt like. But at the same time, that was just my experience as a kid, and I didn’t know anything… I didn’t know what it was like to not have ear infections.
Brianne: Yeah. Yeah. Definitely.
Carmen: But for the energy side of it, which is a big deal now in my life, as a kid in middle school, I could do the things I wanted to do and was a pretty energetic child.
Brianne: Yeah. Otherwise unimpacted.
Brianne: So then when did things start to change for you? Was it a gradual shift or do you have a defining moment of before and after?
Carmen: It was in my last year of high school. I don’t remember getting a virus or anything, but there was definitely a couple month span where I was kind of okay, and then I wasn’t okay.
Carmen: So I was having a lot of muscle pain. I remember sitting in class in high school. Then as I went to college, sitting in the desk was so painful, so I’d have deep pain in my neck and shoulders. And then if I was sitting for a long time, my lower back would hurt. I had really acute pain in my thigh right above my knee, the very front of my leg, right above my knee. It just kind of got condensed into that spot. And so I went to my primary care provider. And, at that point I was diagnosed with fibromyalgia.
Brianne: Was that a pretty quick process at that time?
Carmen: At that point, yes. I think I only went to one doctor, just went to the doctor that I… my primary care.
Carmen: That diagnosis didn’t do anything. There weren’t treatments recommended, and it didn’t… there was no outcome from that.
Carmen: It gave a name to something which may or may not have been correct.
Brianne: Yeah. But a kind of unsatisfying one from the perspective of both explaining what’s going on and also offering a way forward.
Brianne: Yeah. I hear that.
Carmen: And it was long enough ago that I can’t remember if they offered treatment and I didn’t do it, or if they just didn’t offer any options, but the outcome was that I didn’t… I just kind of lived with the pain and I don’t remember taking any… I wasn’t taking painkillers at all. I wasn’t taking anything for it. I was just living through it.
Brianne: You were like, “Well, now this experience has a name. That’s what’s different.”
Carmen: So the muscle pain aspect was the very first way that those symptoms came up for me. And so I just took a lot of naps to deal with fatigue and learned how to shift and sit and not sit for the right amounts of time for me. I just learned how to live with it, and even now looking… if I think to myself right now, “Am I in pain right now?” I don’t know if I’m just so used to it that it stopped registering or if I have actually… if my symptoms have actually decreased since 15 years ago.
Brianne: Yeah, and that’s such a hard, hard question. I know recently… I might have talked about this on the podcast already. Recently I did a bedtime meditation because I was having sleep problems and it was so typical, right? Like, “Relax your toes. Relax your calves.” Going up the body. And when I got to the places where I have nerve pain, which is… I have nerve pain in my thighs, and I have nerve pain in my forearms, and it’s not all the time, but I wasn’t having it. And I lie down, and I did this meditation, and as I relaxed those muscles, I felt it underneath. It was like, “Oh, I’m, I’m in pain all the time. I’m just tensing over it.” And then when I don’t feel that that’s what’s actually happening. It’s like, “Right, right. We just learn to live with this stuff, to cope with it and get other stuff done, and sometimes it breaks through.” It’s so weird when you start to realize that and process that.
Carmen: Yeah. And the ways to compensate for the pain just become so average and everyday.
Carmen: The items… I don’t see those things anymore. I don’t think about them just because this is how I live my life.
Brianne: Yeah. This is what my body prefers. Maybe it would just be a quirk of my body anyway or maybe it’s a chronic illness thing that has an explainable pathology. Who can know?
Carmen: I mean, it’s definitely a coping mechanism just to get through the day.
Carmen: So throughout… there was just a long stretch. The symptoms started in high school, then through college I just kind of lived with low grade pain and pretty intense fatigue. There were… from like 17 to 23, I didn’t really seek care for it.
Brianne: And was it getting worse or was it changing at all at that time?
Carmen: It was… it would change, I think seasonally. It would get a little worse and a little better, but it wasn’t drastic changes. Pretty moderate changes, enough so that I would think, “Oh, this is starting to go away. I’m getting better.” But then six months later, it would be back to where I had been before.
Brianne: You’re like, “Oh this is getting worse. What did I do?”
Carmen: So for a long time I just didn’t do anything, and this is all in the context of being in a family where the women in my family are also going through this same thing.
Carmen: So I was watching my mother and my younger sister, whose symptoms were much worse than my own… I was watching them go through the process of seeing dozens of doctors and the medical trauma that happens. Not being believed. This is a story that we know so well: not being believed, going through treatments that don’t work, having to deal with the side effects from drugs that aren’t actually treating what you actually have because you have a misdiagnosis. All of those things, I was watching them go through, and so I wasn’t at a point where I was in enough pain or my life was being affected enough where I wanted to step into that.
Carmen: So I was definitely protecting myself by not medicalizing it. I just… I’m going to live with this and…
Carmen: And I don’t want to try to do anything about it, because I know how badly it can go. And also watching people that I love go through that is so awful to watch and not being able to do anything about it. I think that’s really formed… that’s a huge motivation for why I started researching and doing the work that I do.
Brianne: Yeah. Yeah. And I’m excited to talk more about that as we get into it. Cause one thing that really strikes me, I just… the other day, or I was at the neurologist’s office, and he was basically complimenting me for not freaking out in the middle of doing a bunch of diagnostic tests, that I was calm and thinking about the whole process rationally, which is… I understand that it makes a doctor’s life easier, but really the only reason that I am behaving that way is because I’ve been doing this podcast. So I’ve interviewed so many people, and I’m so familiar with how long it takes and how much of a mess it is, and we’re just not exposed to that in the normal culture. And I think that’s really interesting. As you’re talking about watching your family members who are having this more severe, it sounds like, experience and then how that informed it. Because so many people I think come into it like, “I didn’t know anybody who was sick and I grew up watching Grey’s Anatomy or I grew up watching House. And so I assumed, when my body started to hurt in unexplained ways, I assumed that I would go to a doctor, and that they would help me.” And when you know that that’s not always how it goes, I think it really, really changes the experience in all kinds of different ways. Because sometimes you can avoid some of the agony, but avoiding the agony of medical care might not be the goal exactly.
Carmen: Yeah. I don’t know. So, yeah, so for me growing up… so my mom is a registered nurse, and so having… if she didn’t have the medical knowledge she had, I don’t think any of us would have the diagnoses that we were eventually able to get.
Brianne: Yeah, that’s interesting too.
Carmen: So she had insider medical knowledge, also had chronic illness, and then my younger sister had pretty severe things happening, and so watching that all unfold really impacted the way… I can’t remember ever going to a doctor and just having an implicit trust that they were going to help me.
Carmen: That was just not how I framed it
Brianne: Yeah. That wasn’t happening for you.
Carmen: Yeah. Even with… I feel like my mother gave a really balanced… she loved nursing. She loved that profession. She also was in a position to really know where the weaknesses were and where… in what ways we couldn’t get help.
Carmen: And how to circumvent that.
Brianne: Yeah. Yeah, and that’s… I just made a really intense hand gesture, but that’s such a big part of it. I think when I complain about medicine or when people that I know complain about medicine, it’s not like, “All doctors are terrible and the whole profession hates us.” It’s like, “As a culture, we’ve somehow decided that we’re not going to talk about the weaknesses of medicine and it’s causing a ton of harm,” which is a really different thing.
Carmen: Yeah. Yeah, and just the ability of the women in my family to get medical care rested on my mom’s knowledge. She needed a degree and a certification in nursing.
Carmen: And it was still a battle for her to get care, even with that knowledge, and that shouldn’t be a prerequisite to getting medical care.
Brianne: No. No. It should not. And a whole other thing that I’m so interested in, which maybe we can get into at some point, but it’s basically respectability politics in medicine. Cause… what does it look like? So much energy and thought and time goes into people thinking about that, “How do I present in order to be taken seriously? In order to be helped?” And that shouldn’t be happening. That shouldn’t be necessary.
Carmen: And I entered those situations… I enter a doctor’s office with almost all of the social privileges that a person can have.
Carmen: I’m walking in as a middle class white woman who… my mom is a nurse and has coached me on what language to use, and so I’m presenting in… with all of those privileges, and it is still a really terrible traumatic experience. And I end up not getting care.
Brianne: And… yes. Someone, on Twitter, Nora, who I also just interviewed, so her interview will probably be out already when this one comes out. She just did a very informal poll that was like, Women, have you ever felt dismissed by a doctor? Men, have you ever felt dismissed by a doctor? Nonbinary people, have you ever felt dismissed by a doctor?” So there’s three polls, and the most people who answered were women, but in all three categories. Everybody said yes. And then there was one man who voted no. One man who like, “No, I’ve never felt dismissed by a doctor.” It must be really great to be that guy.
Carmen: It really does hurt everyone.
Brianne: Anyway, so let’s jump back into your story a little bit, and we’ll keep getting derailed, I’m sure.
Carmen: Yeah so chronologically, there was a short period of time where I did not pursue any sort of medical care. I knew the risks, and I knew what could happen, and I didn’t want any part of it. So I finished my bachelor’s degree and got my teaching certification. I started teaching elementary school, which is…
Brianne: How was that?
Carmen: Lovely. So I taught second and then third grade, for six years.
Carmen: Gorgeous. It’s such a lovely age. I’m very biased, but I love that age cause they’re just really coming in… it’s eight and nine year olds, and they’re just really, a lot of things are coming into place for them. They can tie their own shoes, but puberty hasn’t quite started yet.
Carmen: It’s just a really lovely age, and there were years where I was able… I’d learned enough compensating tricks to get through it. But it just… the cognitive load, the emotional load, and the physical load of like kneeling down and being on eye-level with students and then so much walking and just the physicality of teaching.
Carmen: You’re doing a lot of things. You’re standing at the front. You’re walking around the classroom. You’re out on the playground, and you’re just doing a lot of moving.
Brianne: Yeah. It strikes me as being very energy intensive.
Carmen: Yeah, and at that point I didn’t have a diagnosis, other than the fibromyalgia one that I had.
Brianne: That you weren’t really thinking about, it sounds like.
Carmen: Yeah. I didn’t internalize it, and I didn’t really think about it at all because it had resulted in nothing.
Carmen: Yeah. So I just kind of dealt with the pain, dealt with the fatigue. I would teach. I would do what I needed to do, and then I would go home and sleep. And just kind of cut other things out of my life so that I could do my job.
Carmen: And I’m pretty introverted anyway, so it kind of worked for me. Like, “Okay, I’m gonna prioritize. I’ll see my friends this many times a month, and I’ll section out my energy to do my job, do the social things I want to, and then really just cut out most everything else.”
Brianne: Yeah. And I think that thinking about it, that introvert/extrovert thing, it can be really interesting to be like, “Well, what part of this is my personality? And then what part of this is my physical needs?” And sometimes it can be really hard to parse that out, and it doesn’t matter in a way. But if you’re like, “Oh, I’m an extrovert and my body requires me to be home alone for 20 hours a day, no matter what.” It’s interesting to navigate that, how sometimes I think personalities can make it easier or harder to cope with the same situation.
Carmen: Sure. And I do think that I am for sure naturally introverted because I get my energy and recharging from being alone and mindfully thinking about things. But I also think that my personality would be much different if I didn’t have chronic illness. I think I would be a lot more vivacious, if I wasn’t so tired all the time.
Brianne: Yeah. I always wonder, cause I’m a very plan… type A, plan-oriented person. And I’m just like, “I wonder if I would be less rigid if it didn’t… if the consequences weren’t so severe for forgetting water or forgetting whatever it is.” You know? It’s just one of those things. Okay. So you’ve been teaching, et cetera.
Carmen: I was teaching. It was getting harder and harder. I got to a point where it was… the chronic illness… the symptoms were getting in the way of doing my job.
Carmen: I was getting more and more brain fog, and I think what was happening is that I didn’t realize that the types of movements I was doing… so crouching down at a student’s desk, helping them, and then standing up immediately. I was doing that multiple times, and then I didn’t know that that was related to my chronic… I didn’t have any framework to know it was related to my chronic illness. So the things… I wasn’t able to compensate for things I didn’t know about.
Brianne: Right. Of course.
Carmen: So it got to a point where I wasn’t… I was having so much brain fog, and again, I didn’t even have words to describe what it was. I was just cognitively not able to navigate like, “I’m going to plan this curriculum and unit.” I wasn’t able to do it as well as I had been in years previous. So it got to a point where I decided that I would actually see a doctor, and that decision was really influenced by… my younger sister had finally gotten a diagnosis after a decade. Well, she started having symptoms when she was 18 months old. So it had been 20 years, but a decade of really searching. So she had traveled out of state to go to a clinic. They’d given her a diagnosis, but nothing else. Like, “This is what you have.”
Brianne: “Good luck.”
Carmen: “And we can’t help you with it.”
Carmen: “You can drive back home.”
Brianne: “Take that with you.”
Carmen: “Figure it out yourself.” But getting the… so she was diagnosed with postural orthostatic tachycardia syndrome, POTS.
Brianne: Okay. With only POTS?
Carmen: At that time, that was the diagnosis that she had.
Brianne: Okay that’s also interesting.
Carmen: It explained some of what was going on with her, but not all. But because she got that diagnosis, I was able to go to her doctor that she’d been seeing. So she found a doctor who was able to treat that, and because she and my mom had done all of that labor to get there, I was able to just go to that doctor.
Carmen: Do the… I’m forgetting the name of it, but where you lay down, they take your heart rate, you sit up, they take your heart rate.
Brianne: Yeah. So that one… I actually don’t know that that specifically has a name because it’s just the kind of in-office version of the tilt table test. So I don’t think that there’s a formal name for that because I see casual references to it all the time and have also experienced it, but I don’t know that it has a formal thing, but I know what you mean. Yeah.
Carmen: So I did that, and it was clearly POTS. And so at that point, I was 29 at that time. That was 2016, and that’s when I got the POTS diagnosis. And so at that point I was able to compensate with lifestyle changes. I started upping my salt intake. I started making sure I was drinking enough water. I lifted the head of my bed. I started wearing compression.
Carmen: And so for a while… I also stopped teaching, and I moved out of state and got a job, doing curriculum writing. So it was a desk job at an online, educational company. And so I was still using my teaching degree, but it was in an office, and it was much more doable, and it was way easier than teaching.
Brianne: So you’re going to an office, but sitting down to work, basically, in one place as much as you needed to.
Carmen: And I was able to negotiate, because of the type of work it was, I was able to negotiate working from home two days a week. Which absolutely, that allowed me to keep that job and to be able to do it.
Brianne: Yeah. Yeah. I find I need to do so much of my computer stuff while lying down, and actually for… I did quite a few interviews lying down in the last month. So sometimes it’s just… you’re like, “I can’t do this in an office, but it’s the only way forward, so thank you.”
Carmen: I was really glad to be at a company where I could ask for that, and it was a possibility. IN fact, company-wide as a venture to reduce air pollution. Everyone could do a work from home day to reduce polluting.
Carmen: So I just negotiated that from one to two, so that was a good situation to begin. At that point, so I had my POTS diagnosis, I now knew like all of the lifestyle things I could do for it, and that helped enough that I hadn’t really started any medication for that.
Carmen: And I was just doing the lifestyle things, and just learning everything I could about like, “Okay, what are people… what are the hacks? What are people doing to compensate? And what is the physiology of what’s happening?” which is so complex and I don’t understand all of it still.
Brianne: And I think it’s also still… there’s some conflicting theories for dysautonomia in general, right? Of like, “Well, it’s a neurological thing that impacts your heart because it’s your autonomic nervous system.” But we don’t fully know why. And where does your blood go? You know? Cause one of the features is low blood volume, which… I’ve also heard explanations for that, but it’s a really deep hole you can go into. I agree.
Carmen: And it manifests differently for different people. And for me… so I have a POTS diagnosis and also hypermobility, but that’s pretty mild. So on the mild end of EDS.
Brianne: So would that be, officially, hypermobile spectrum disorder?
Carmen: That hasn’t manifested in severe symptoms for me, but I have it.
Brianne: Yeah. And that’s, from my understanding, it can be so many different things. Any of these connective tissue problems, because you don’t know where they’re going to impact, and how much pain it’s going to cause, basically, or what other symptoms it’s going to impact, so gotcha. But that could be related to some of your chronic pain issues that you developed early, right?
Carmen: Yeah, it absolutely could be.
Carmen: So at that point, I had a diagnosis. I’d already lived my… my whole life had already been informed by what it means to have chronic illness because of the family that I am in. Yeah. Sometimes when I approach people who have had different experiences than me, I just… it really shows me how different my experience was.
Carmen: To most other people’s, because chronic illness was just always been on the table. It has always been something that’s impacted how I view medical practitioners and treatments, and I guess the lens through which I see a lot of things.
Brianne: Yeah. And just even having a familiarity, gosh, my brain is fine today. But yeah, seeing it compared to so many people who just have no idea that these even exist, but I think, like you just said with POTS about teaching, that was also my experience with POTS is that I didn’t know that it was a thing. It never occurred to me that going from say, crouching to standing or sitting to standing could trigger something in such an extreme way. And so even though I also have vasovagal syncope, so I have fainted before, like a triggered fainting. So I know that one feeling, and it’s similar but also different. So tunnel vision was just always like, “Oh yeah, I’m just a person who gets tunnel vision sometimes.” But no, there’s all these other things that could be going on that can be making you uncomfortable in much more subtle ways, and unless you know to check your heart rate, you would never think to check your heart rate when you just feel bad, like vaguely bad.
Carmen: Yeah. yeah. And to backtrack a little bit, I had… so in that… while I was teaching, I had gone to a nurse practitioner that my family had seen a few times, and I went to her because I was so tired. And so she gave me some vitamin supplements, which are great, and I still use some of those. But I had some labs done, and she really focused just in… I have such mixed feelings about this particular medical provider because on the positive end, she was so willing to try things and then meet with me. I just… saying it out loud, I’ve been so fortunate in the physicians that I’ve come in contact with. This is not the usual route that people go through. I’ve benefited from other people’s work, for sure. So on the positive end, she was willing to meet with me, try a bunch of different medications and kind of see how they work. And she was very open to lots of different, like, “Let’s try…” and then she would listen to me about how it worked out, and then we would adjust. The negative side of that was that from the labs that came back from my blood work, she really honed in on my thyroid because my thyroid levels were just a little bit off, and so she… I tried every thyroid medication available.
Brianne: Okay. So synthetic thyroid type-stuff and…
Carmen: All of them.
Brianne: All of the thyroid replacements.
Carmen: Yeah. The natural direction, all of the synthetic stuff. I tried every single one, and… so that diagnosis of hypothyroidism was unhelpful, and I… looking back, not accurate due to the fact that all of the treatments were really damaging instead of helpful. So that was a couple of years of taking medications that weren’t helping what I had, and then I had to deal with all of the side effects,
Brianne: Yeah. Throwing other systems into disarray maybe. Yeah.
Carmen: Yeah, for sure. And that was before I’d gotten my POTS diagnosis, so that experience made me just so careful about…
Brianne: Yeah. What you go chasing, kind of?
Carmen: Yeah. I didn’t want to lose the willingness to try things because I had seen… and all of this is in the context of my mom is trying different treatments, my sister’s trying different treatments, and seeing the variability, even between us, we share really similar DNA and environment, just seeing how different medications or non-pharmaceutical treatments would work differently for us, and then being able to pool that information was really helpful.
Brianne: Yeah that’s closer to a trial than most people.
Carmen: Yeah. Yeah. So dinner time at our house was like… we would talk about dating or disease and those were the two topics.
Carmen: And so we really… being able to navigate it together has been just so helpful. So I didn’t lose the willingness to try different things because I knew you just have to know your body really well and really track how you’re responding to different medications. But that experience of trying all the thyroid medications when that wasn’t actually what was wrong, it made me tired. So I just kind of went off of all the things I’ve tried and didn’t really go… I didn’t go back. I didn’t go to anyone else until I got a diagnosis at age 29.
Brianne: So until you were like, :POTS is the thing worth investigating, and this is a practitioner that I think will be helpful.”
Carmen: Yes. So the practitioner that my sister had gone to, he was trained and his mentor, trained him that first and foremost, you believe the patient.
Carmen: And I would say that his bedside manner is really straightforward and maybe a little gruff. He’s not a warm person, but he is incredibly effective because when you bring information about your body to the table, his frame of reference is to believe you, and then to work from that information. That changes everything.
Carmen: The reason I was able to get help is because my doctor saw me in that way and sees all of his patients in that way.
Brianne: Yeah, that’s the number one thing. Again, just cause when we get into… in these conversations, there does end up being a significant amount of complaining about doctors, but it’s not like everyone’s out there wishing that their doctor had all the answers or wishing that their doctor was perfect or that they don’t understand that medicine has a lot of spaces to grow, we’ll say. It’s this thing of like… there are so many doctors who don’t believe patients, and there’s a huge cultural legacy for why, and there’s a lot of privilege, like you mentioned earlier, but that’s the number one thing that I would love to see prioritized by all practitioners, for sure. It changes lives. It’s amazing.
Carmen: It really does. So in his medical training, he’d been… he learned briefly about POTS and dysautonomia, but then was told like, “This exists. You’re never going to see it.”
Carmen: Which was incorrect because now he is one of 23 certified specialists in the United States, doing just amazing work for dysautonomia.
Brianne: Just dysautonomia? Yeah. It’s amazing to even call it rare… now I should go through the transcripts of all the interviews that I’ve done, because POTS is one of the most common comorbidities.
Carmen: Yeah. Something I learned from this doctor is that one in a hundred teenagers will have this.
Carmen: So he’s primarily a pediatrician, and so he would see just tons of teenagers, mostly teenage girls who were having the onset of dysautonomia.
Brianne: Yeah. God. Okay. Amazing.
Carmen: I’m so fortunate to live close to this doctor. And just so much privilege… my parents had known him when he was young and knew his family. And we had thes, personal connections that got us to a place where we’re able to get a diagnosis. And then with a diagnosis, we had the knowledge to make lifestyle changes, try different pharmaceutical things.
Carmen: So at the point where I moved away… so I moved out of state. I was doing the curriculum job, kinda hanging in there, just doing the lifestyle stuff, had my two days working from home every week, kind of doing okay, but it still got to a point where I was struggling so much just to have the energy to do my job, and I really wasn’t doing anything else. I was going to work, and then I was lying down the rest of the time.
Brianne: Yeah. Relatable.
Carmen: And so I went to a new doctor cause I’m in a new place, went to a doctor, and in retrospect I should have run away. I should have seen the red flags and run away. But I sat across from him and he was like, “Oh yeah, I know all about POTS, and I can absolutely help you.”
Carmen: And that was A.) False, he did not know all about POTS and could not help me. But just the confidence of it should have been a big red flag because people who actually know about it don’t talk like that.
Brianne: Yeah. Yeah. There are things that that might be true, like… I don’t know what offhand, but there are situations where a doctor might be able to say that and have it be totally accurate, but dysautonomia?
Carmen: Is not one of them!
Brianne: Yeah. Again, where the cause isn’t even really understood? If you don’t know what’s causing it, there’s no way you can tell me that you can totally manage every case. Anyway.
Carmen: So at the time I was like, “Nah, you’re full of it.” This guy’s really arrogant, but that was not a severe enough reaction for me. I should have been like, “Okay, I’m not coming back.”
Brianne: Yeah. That’s hard to do.
Carmen: But at the time I just thought like, “Eh. I just want a little bit of help.”
Brianne: Yeah. And it’s easy to be like, “Well, I know kind of enough that I’ll manage my own care and use this potentially shitty doctor as a resource, so if I know what I want to ask for, I can go in and make that happen.” But sometimes that isn’t how it goes, also.
Carmen: Yeah. I didn’t pan out well. So I, again, did a bunch of labs. He looked at all my levels of everything and decided that I needed… so my hormone levels have always been pretty out of whack, and he decided that that was thing. So he put me on estrogen cream.
Brianne: Potentially very intense.
Carmen: Which made all of my POTS symptoms just, exponentially worse. So I started taking… it started messing with my hormones.
Carmen: Which threw all of my POTS symptoms into overdrive so then I couldn’t stand up. I was having to… patchwork of calling in sick and asking my boss if I could work from home for extended periods.
Brianne: All the time.
Carmen: Not great. So at that point I decided it is worthwhile for me to fly home, see the original doctor and that’s when I started pharmaceutical treatments. And so that was a process of finding what would work and what wouldn’t work. So that’s been a few years of like, “Okay, does this drug help? Can I take the generic? Can I take one that’s similar but not quite the same?” And just kind of getting a plan in place in addition to the non-pharmaceutical.
Brianne: And what has that looked like? Cause beta blockers can be recommended. I don’t know a lot about the pharmaceutical interventions for POTS.
Carmen: So there’s, once the… to increase your… I wish I knew more about the physiology behind it.
Brianne: Behind it. Yeah. As technical as you can get, but it’s okay if… this is not a science podcast.
Carmen: I’m not a biochemist, but my understanding is there’s medications to increase, basically your blood volume and then also medications to lower your heart rate.
Brianne: I think that would be what beta blockers do, I believe.
Carmen: Yeah. I… so there’s a test you can get that tells you how you metabolize different medications, which I have not gotten, but my sister did. So that is something in the future that I think would be helpful for me to get, of how I metabolize different things, because I’ve noticed that’s different even between me and my family members. We will respond differently to different medications. Yeah. So I just put together like, “Okay, these heart rate and blood volume medications.” And even figuring out which manufacturers… like when the pharmacy, even to this day, every time I go to the pharmacy, I have to have the conversation again of, “You cannot change the manufacturer on this because these are the outcomes.”
Brianne: Yeah, depending on what fillers they use or just all of the things that go into drugs that we don’t…. that we aren’t necessarily told about as consumers.
Carmen: I was doing some research and it can be up to 20% different between… the same drug, from two different manufacturers can be up to 20% different ingredients, and that’s huge. So I hope I’m remembering that percentage correctly, but I think that’s it. And yeah, so just over and over again, talking to the pharmacist about like.
Brianne: “This one is working.”
Carmen: “I need this specific manufacturer because if I don’t have this one and I have this other one that tends to come in instead, I will be very dizzy and I won’t be able to stand
Brianne: up.” Yeah, it has a dramatic effect. Wow.
Carmen: So that’s an ongoing thing.
Brianne: Yeah. So have you found… cause this is all now relatively recent.
Carmen: Yeah. Now we’re up to the present.
Brianne: Yay. Kind of. So are you still experimenting with those, or have you found something that’s working pretty well for you at this time?
Carmen: I have, yeah. So I have my treatments pretty locked down. At this point, it’s just like fiddling with dosages and…
Carmen: And just kind of matching them to the natural ebb and flow of… if I’m getting a little bit better or a little bit worse, kind of responding to that, but I ended up pretty good. Yeah. I’m in a good place where I kind of know which medications I respond well to, and I haven’t been trying anything new for the past… about a year.
Brianne: Wow. That’s a long time.
Carmen: That’s remarkable.
Brianne: Yeah. That means that things are pretty stable, usually, in my experience, even if you’re like, “Well, this is chronic illness, but nothing has happened that has made me be like, ‘No, what can I do about this problem?'” Yeah.
Carmen: Which is just, it’s beautiful.
Carmen: Compared to where I was before.
Carmen: So once I started, because I have this amazing doctor, because I was getting actual treatments, I applied to graduate school. So at that point I was still thinking along the lines of like, “I’m an educator. I’ve always wanted to get my master’s degree.” Now that I was on treatments, I thought, “Maybe this is the time. I’m doing well enough where I think I could do it. I have ther social support I need for this, through my family and everything.” And so I was just looking through master’s degree programs and initially looking through Master’s of Education, reading specialists kind of things. But I came across Arizona State’s… I was reading through all of the master’s degrees that they offer, and in the social sciences department I found the masters of social justice and human rights. So I was reading through it, and I just want to read from the website. As I was reading, I came across the description, and I just kind of stopped and I was like, “They took all of my personal core values and made a master’s degree out of it.” So their description is, “The MA program in social justice and human rights addresses urgent social issues related to human security, labor, migration, children, family education, and the environment. The coursework in this theoretically and methodologically rigorous program, examines social issues in contexts defined by multiple and intersecting forms of social identity and disadvantage, including gender, race, ethnicity, class, sexuality, and nationality.” And so I applied, and that was the only program I applied to. I got in, which I feel very fortunate about, and so I wrote all of my personal statement and statement of intent application materials about like, “I’m an educator, and I’m interested in creating literacy programs for at-risk populations,” and that sort of thing, very literacy-based. I got into the first semester of theoretical coursework, and I was learning about all of these social systems… just a lot of reading about bio politics and power over bodies and how government systems and medical systems and criminal justice systems have power over bodies. And so as I was reading all of that, a lot of it was centered on immigration and labor, but from my life experience, I was reading it in ways that apply to healthcare, and so it was a few months in where I just had this realization that like, “Oh, I’m going to write a thesis about health care.”
Brianne: Yeah. Now it’s like, you have to.
Carmen: I just saw all of these different layers just click into place, and so in my coursework… yeah, all of that theory for me was very visceral. I want to be able to create research that addresses these issues in a way that makes the world better for the people I know, and the people that are going through really hard things with their doctors when they don’t have to be.
Carmen: So, I did an internship with a patient advocacy group for myalgic encephalomyelitis. So ME, sometimes called chronic fatigue syndrome, but that’s not the name that I like to use for it because it’s not helpful.
Brianne: It’s not helpful at
Carmen: all. It has caused a lot of harm. So I started interning for this patient advocacy group for ME because locally, a lot was going on with them. They are a pretty vibrant. They’re doing a lot here, locally. And so I don’t have that chronic illness, but there’s a huge overlap in patient experience. And also a lot of people with ME also have POTS.
Brianne: I was recently reading the diagnostic criteria recommendations that included orthostatic intolerance.
Brianne: It’s in there as an either/or… I don’t know that this has been adopted yet, but one of the popular criteria is that you either have PEM, so post exertional malaise or orthostatic intolerance, which can feel really similar. Just on the side.
Carmen: Yeah. And I would say… yeah. I meet the diagnostic criteria for ME on everything except for post exertional malaise. I don’t have that. So there’s enough of an overlapm and it was an organization that I really wanted to work with. So I did my internship with that, which then influenced my focus for my thesis research. I originally wanted to do thesis research, interviewing people with all different types of chronic illness. So I wanted to look into endometriosis. I wanted to look into fibromyalgia. I wanted to look into dysautonomia and myalgic encephalomyelitis, and that was untenable for one person to do. And ultimately I did my thesis research, the interviews, the analysis, the writing, and defending it in six months.
Carmen: Which is so fast. And so I really narrowed down into, “Okay, I’m going to do…” I ended up doing seven interviews
Brianne: All people with ME?
Carmen: People with ME, which… it was a good setup. It was doable. I was able to do that, and then I was really able to go in-depth with those interviews, which is what I wanted. And I was really trained with my coursework to do interpretivist research and cogenerating meaning with participants. I loved my research methodology courses. So I had these research courses about just the difference between positivist research and interpretivist, where positivist is the researcher shows up as a neutral observer and has subjects that they observe. So the subject might be a cell in a laboratory, or it might be mice in a laboratory, or the subject might be a person that you’re observing.
Brianne: Neutrally engaging with somehow, whatever that means.
Carmen: Which I mean… there is no neutral observation.
Carmen: So interpretivist research recognizes that, “Okay, we’re all going to bring biases, but how can we have the researcher and… instead of having subjects, we have participants. So how can we both as the researcher and participant, bring knowledge together and co-create meaning?” And so having that training. And kind of an ethnographic sensibility in this community that I’m are already largely embedded in.
Brianne: Right, right.
Carmen: And being able to…
Brianne: There’s no way to be neutral. I know you’re already saying that.
Carmen: I am not neutral about it.
Carmen: Yeah. And I recognize that, my work comes from a place that is not neutral.
Brianne: An the outside observer with no opinions on healthcare.
Carmen: Right. I’m not an outside observer, and I think that’s okay.
Brianne: Yeah. Okay. And so you were talking to seven people, and so what… gosh, six months is very fast.
Carmen: It’s so fast.
Carmen: I, so that was this past… I did my interviews in December of this past year.
Carmen: I just ended in April.
Brianne: Okay, so fresh. So what… tell me, what did you… what were you asking or what was your… I don’t know how to frame the questions the best way, but what were you asking and what did you come away with? Especially as the people who are listening will be people living with chronic illness, and so I’m so curious about how that all came together for you. What did you learn?
Carmen: Sure. Yeah. I was really mindful of the way I constructed my interviews. I did semi-structured interviews, so I had questions that were more like themes. So I had a structure of themes I wanted to talk about. And then I would ask… within those themes, I would ask follow up questions as they came up, but I didn’t have a survey of specific questions. So the themes I asked about were the history of their onset, much like we’ve done here. History of onset, the process of getting a diagnosis, how long did it take? Who did you have to meet with? What were the responses from doctors when you were sitting in their office?
Carmen: And then I asked about barriers, things that inhibited care and were barriers and also things that opened up access.
Carmen: Those interviews were gorgeous. Being able to sit with people and hear their stories of illness is just a very sacred gift. I just feel so privileged to be able to sit with people, and for them to trust me enough to share those stories about their lives. It’s a… I was asking them to share vulnerable stuff, and all of my participants were just so giving and beautiful, and sharing really difficult stuff. And also, we’re all in the process of understanding our illness continually. And so to be able to speak from still being, oftentimes, in the process of understanding it themselves.
Carmen: And being able to share that in just such a coherent way. I mean, there’s oftentimes where I have brain fog and I literally can’t think of the right words that I want, and so to sit with people and just hear them express things so beautifully.
Carmen: Despite all of the brain fog and cognitive issues.
Brianne: Yeah. You realize it’s like, “Okay, if we both show up and we both know that there is cognitive impairment, perhaps on both sides, depending on the day, depending on the symptoms, depending on whatever, and we’re just going to make space for that and let that be an okay part of a conversation.” Because I think sometimes that. By itself, that can be a barrier. I have to show… if I want to go somewhere, I want to go to an event or I want to participate in something, I have to either try to mask it, whatever that might look like. I want to either go and I’m going to show up and I’m going to try to pass because passing is just easier than explaining it or I’m not going to pass. And then I’m going to have to navigate. And again, everything else aside. So like mobility aids…
Carmen: That’s a tough choice.
Brianne: Yeah, mobility aids and all other kind of visual indicators of illness aside, just how we engage with people can be so… and that takes energy and energy is precious. Yeah. There’s something about having this kind of conversation where you’re like, “We both have the same basic understanding of what the barriers might be to…” Yeah. Right now I don’t have it, but to good expression to coherent expression. Cause there are many.
Brianne: Yeah. And then so to convert those interviews into scholastic work, how does that go? Or for people who… were faculty very aware of this as an issue before, did you find? Your faculty, obviously.
Carmen: Yeah. Okay. So there’s two parts to that question. Remind me about…
Brianne: The first one was just kind of… yeah.
Carmen: Okay. Remind me. Yeah, I’m gonna write it down as a note cause…
Carmen: Memory is not great for me.
Brianne: And I would be a terrible Scholastic researcher cause I tend to ask just five questions at once and see which one sticks, which means that I get wildly different topics covered all the time, but that’s fine.
Carmen: That’s great. I want to talk about all the different topics. So my main goal with the research… I had two goals. One was to document and to have in public record and in academic record, the lived experiences of people with myalgic encephalomyelitis, so one of the main chapters in my thesis was the lived experience.
Brianne: So just documenting, “This is what this is. These are these people,.This is what they have in common.” et cetera.
Carmen: Yeah, being able to tell those stories in an academic space where I’ve already started with my literature review, I’ve covered the social, medical, cultural history and all of those academic aspects. And then with that framework, I can now dive into, “These are… informed by all of that academic research, these are the stories of real people who are living out their lives, and here are the barriers that are coming up. Here’s how it links to broader, more quantitative research of prevalence and things like that.” Yeah. So linking it to, “Okay, we know this. We know that there are about this many people with ME. We know that on average, people with chronic illness need to see this many doctors, or it takes this many years.”. I’m forgetting the actual numbers.
Brianne: But they’re definitely high.
Carmen: Yes. So we know that broadly, what does that look like for an individual person? And then being able to tell that story in an academic setting was one of my main goals. And then my other goal was to end with a chapter on recommendations. So having a bulleted list of, “Here…” So I broke it down into macro, mezzo, and micro levels. So like institutional level, macro, recommendations for institutions and then mezzo level, for physicians. So I had recommendations for like, “Okay, you’re an individual physician in this system, what can you do?” And then also I had recommendations for patients that were from the participants. So participants would say, “These are the things that worked for me, and these are the things that I know now that would have helped me 10 years ago when I was starting out doing this.” And so I was able to document.
Carmen: Institutions need to add myalgic encephalomyelitis to the medical curriculum, which is a battle in and of itself, but just to be able to document that in an academic space. And yeah, laying out for physicians… so when I asked what the barriers were to care 50% of the response, 51% of the responses had to do with physician behavior.
Brianne: Yeah. That sounds true.
Carmen: So half of it was a mixture of insurance and financial issues and geography, being able to get to a specialist and all… and other barriers of it not being in the curriculum and all those things. And then half was all about physicians who dismiss, physicians who lack of communication skills and follow through, physicians who use dehumanizing language towards patients. So that was a huge takeaway from the research, which is not surprising to me.
Carmen: And one of the participants said, “In our community, we know this.”
Carmen: “We know that doctors use dismissive language. We know that it’s a problem, but the wider society and the wider medical community doesn’t know what we know.”
Brianne: Right. Right. And just healthy people and people… which translates into people who are making media. So, yeah. And when I say that, I mean all kinds of media. People who are choosing what books get published, people who are writing movies, people who already TV shows. There’s… I’ve seen almost zero representation of what I know is a super common dynamic between patients who are… non diagnosed patients. Because I personally am now choosing not to use the word undiagnosed because I think there’s a lot of a willful non diagnosis that goes on in this exact thing. BUt that’s another war that I want to wage at some point because that’s what it is. When you choose not to look at somebody’s symptoms, and you choose to send them home with a mental health diagnosis when they don’t have an underlying mental health problem, you as a doctor are choosing not to pursue diagnosis. And I think that’s not represented at all, and people who haven’t been through it or haven’t cared for someone who’s been through it have no idea how rampant it is and that’s infuriating. That’s a small rant for me. Sorry, continue.
Carmen: I’m with you on that. Yeah. The refusal to see a problem that is pretty well-doc… it is very well-documented, academically documented, but also they have patients sitting right in front of them that are telling things. There is also a refusal there.
Carmen: Very dehumanizing.
Carmen: Your second question, did I answer enough about the research?
Brianne: Yeah. Yeah, that makes sense to me. Yeah. Just what the undertaking was and then what you came away with.
Carmen: Yeah. I mean, it was just a lot of sitting at a computer, and it was a lot of coding, which I had never done before. So going through the interviews and tagging different themes, like, “Okay, here they’re talking about dismissive language, and here they’re talking about insurance barriers, and here they’re talking about the onset.” I would code it. And then that allowed me to look for patterns.
Brianne: It’s like converting the story into data.
Brianne: Yeah. Yes. So then faculty.
Carmen: My faculty was awesome. They were wonderful. I… especially coming from… it’s a very interdisciplinary program.
Brianne: Yeah. I believe that.
Carmen: Which worked very well for me because I… at least in my cohort of students, I was the only one doing a health care and health related thesis. So I was just so fortunate, so I want to talk about my three thesis advisors because I was able to get someone… I had someone from the social justice and human rights department. Her background is in political science, and then I was able to get someone from the justice studies department on a different campus, and her background is in disability studies and terrorism. And then I had my third committee member was in the English department. And she specialized in the history of medicine, 17th and 18th century texts, novels, poems, sometimes scientific texts. And how ideas about medicine formed over those centuries.
Brianne: That would be super interesting.
Carmen: So I had three very different fields, and I was able to draw from their expertise and really overlap that. And I had a lot of people warn me, “Don’t get these as committee members from different departments because they will compete with each other and make your life miserable.” I… that might be true for some people. It was not true for me, and I think having all women on my board… it was a very collaborative experience and having people from different fields expertise just… we were able to bring all that knowledge together and check and balance things, but also also expand into areas where I might not have considered.
Brianne: Yeah, definitely. Because there is so much more context because I mostly just talk to people… talk to patients. There’s so much broader context that I think a lot of us and myself included, aren’t really aware of until we have the time and energy to go digging into, “Okay, well,” as one example, “what is the legacy of hysteria and how does this impact the way they were treated by doctors each day?” You have to go digging for that, which means you have to have the energy for that and you have to have the cognitive comprehension for that. All of these things that can prevent you from really understanding the larger picture, when you’re just trying to get through the day.
Carmen: Yeah. So I felt very lucky that I had faculty members that were very rooted in theories that supported research about chronic illness and also with personalities that allowed all of that collaboration.
Brianne: Yeah. All of it to come together. That sounds excellent. And so you literally just finished, it sounds like.
Carmen: I just finished.
Brianne: You’re probably just breathing.
Carmen: Yeah. I’m so exhausted.
Brianne: Yeah. I think at this point, after,,, when I went to grad school, for months I was just lying around being like,”It’s okay, brain. It’s okay. You don’t have to live in that world anymore.”
Carmen: Yeah. I definitely feel like I’m still in recovery mode.
Brianne: Yeah. So what… now, back to just life stuff. So what is your day to day like now? Recognizing that it’s obviously probably radically in transition cause school is a kind of unique schedule that can really suit some people, I think, with chronic illness, cause you don’t have to sit in an office from nine to five or whatever… do things super physical. So what is your day to day life or what are you planning to build? How do you want to shape your life? What makes sense to you right now? This is what I mean about the compound questions.
Carmen: I am currently very much in transition, and going from such a high intensity, like, “I have to get this thesis done very short amount of time,” Every day, high intensity, working as hard as I can without breaking, going to nothing is, that’s drastic. So currently I am putting together applications for PhD work, so applying to PhD programs, which is so labor intensive. I don’t know how people do it.
Brianne: Yeah. Over a long time.
Carmen: It takes… I’ve been working on this for a year.
Brianne: Yeah. Just the application process?
Brianne: Yeah, yeah. It looks like a lot. Whenever my brain has been like, “What if you did go back to school?” I just get into reading the requirements and I’m like, “No, you don’t want to do that right now. That’s a lot of prerequisites that you may or may not have.”
Carmen: I love being in school ,and I really want to build on the research that I did. I feel like my thesis was… even now there are… I know exactly where the areas of weakness are in my thesis, and I want to be able to do more interviews. I want to be able to apply it more, and I want to build on what I’ve already done.
Carmen: And the place to do that is in a PhD program for me.
Carmen: So I’m applying to a bunch of different programs and hopefully next fall will be doing that. In the meantime, I’m looking for either contract work or just local nonprofits I can work with here to make some money.
Brianne: Yeah. Places where you can perhaps work slightly but also not overextend and throw your whole equilibrium out of whack. Yeah. I hear that. Yeah. Well, is there anything that’s on your brain that we have not gotten to today, either in your own story or in the broader context since that’s what you’ve been looking at so much?
Carmen: I’ve been thinking a lot about how to articulate this experience about health to people who do not have the experience. And how to translate that into political action, which is so hard because people don’t want to talk about your disease, and they don’t want to talk about politics. So being able to talk about… when health care is on the line, when there are bills in the Senate that threatened my access to health care, how can I harness the academic knowledge I have, but also the personal relationships that I have to create some sort of change with that? Mostly I’ve been very frustrated and sad about it, but I’m trying to get to a place where I can do something positive with that. Even talking to extended family members who… or even people in general who have good health, and so health care means something to them. It is completely different than what it means to me.
Carmen: And getting better at having those conversations in a productive way.
Brianne: Yeah. I think a lot about now, so I’m at about… I’ve done over 40 interviews, so I’m closing in on 50 right now. I don’t think I crossed it yet, and I think a lot about, what do I want to do with just the language that I’ve accumulated? Because for me, that was… for me, this project, that’s been a huge part of it. How are we all talking about it, when we all have these cognitive impairments? So I think everybody has figured out like one thing to articulate really clearly and then is looking for ways to articulate other parts of the experience, and if we can collect enough of it… I think that there’s… a lot of this has been so well-documented on an individual level that there’s stuff worth sharing here and what does that look like for me? And who do I want to reach out to? Because with this podcast, I’m interviewing people with chronic illness, and maybe there’s something else that they have, like a professional lens that they are also bringing in, like you are, but also maybe not, but I’m not talking to people who are only coming in with a professional lens. So practitioners or researchers or whatever who have never experienced the actual… going through it themselves… no. And I’m going to assume that listeners have chronic illness, and it’s cool if they don’t, thanks for listening healthy people, I guess. Cause I know some healthy people do listen, but I’m not trying to translate in the course of these conversations. But after this many conversations, I feel pretty prepared to translate. And so how and to whom and in what way? Same questions that you’re asking. I would love to talk to doctors about what the diagnostic experience feels like on the other side, which I think is part of what you have definitely run into. And even, I’ve talked about this on the podcast before for sure, right now there’s no feedback mechanism in medicine. So the doctor who gave you estrogen cream and then sent you home and then you gave up on and went to a new doctor… That doctor. I mean, I don’t know, maybe in your specific case there was some feedback, but that doctor could just as well think that he solved your problem. And that’s not your fault, but that’s a system that’s a really big systemic hole that feels maybe not easy to address, but like an obvious place to start. And there’s so much stuff like that where you’re like, “They just don’t know. Nobody’s telling them.” I mean, doctors know that misdiagnosis is a problem, but they don’t know that it’s their problem basically. All that stuff.
Carmen: And that it’s as big of a problem as it is.
Brianne: Yes. Yes. And especially, I would say with the mental health misdiagnoses, and again, cause I talk about this so much, not that I don’t think that depression is real or not that I don’t think that anxiety is real and not that I don’t think people should be treated for both of those things because I absolutely do. And I absolutely think that they’re comorbid with a lot of these other diagnoses as well. But when doctors just say, “Oh, sounds like depression, take this SSRI and go home.” That’s…
Carmen: It’s not a treatment plan.
Carmen: And it can be comorbid. It is possible to have many other… you can have cancer and depression at the same time.
Carmen: You can have chronic illness and depression or anxiety at the same time.
Carmen: You treat them, you treat those two things differently.
Brianne: Yeah. And it’s even the same as that intersection of,, when is talk therapy helpful and when is it not?
Brianne: And I’m sure this comes up so much with ME, just because there’s still… the pace trial still underlies so many treatment plans and nobody with ME is out there saying that therapy isn’t helpful for anyone. They’re saying that cognitive behavioral therapy doesn’t cure ME. These are different but related concepts, and parsing out that nuance on a cultural level feels very important.
Carmen: Yeah, it is. Yeah. So when I have conversations with acquaintances, it’s usually me sharing what my chronic illness means day to day, for me, and then the response is very often, something along the lines of, “Well, I’ve been reading this about positive thinking. Have you tried positive thinking?” Which… that’s such a common… I’m saying it out loud, and that is so common for people with chronic illness, to approach that. I don’t want to be the person who is knocking down positive thinking as not helpful because absolutely, it helps, but it’s not an answer to what I just talked about.
Carmen: If I told them about a different sort of disease that has been… that has a different cultural meaning.
Carmen: I don’t think that would be the response.
Brianne: Yeah. And it depends. It depends on how deep into toxic positivity the person is, sometimes, as to how many things they think it can cure. Cause I think I’ve had it a lot as using diabetes as an example of… when people have type one diabetes specifically, and I’m sure people with type one diabetes get all kinds of bullshit, and I know the diagnosis takes longer than it should. And I don’t mean it in that way. Like, “Wouldn’t it be nice if we all have type one diabetes?”
Carmen: Things need to be better in a lot of different areas.
Brianne: But we’re at a point where, with type one diabetes, culturally, we understand that insulin is the answer because we understand the pathology of it, that your pancreas has stopped making insulin and so nobody… well, this isn’t true. I’m sure somebody out there is like, “You can positive think your way out of that.” But most reasonable people would never suggest that the way that they suggest it for things that are understood more poorly. But again, I know the type one diabetics go through a lot of bullshit, so I’m sorry to any type one diabetics who are listening who are like, “No, I get a lot of bullshit.” I know that you do.
Carmen: I think we all have to wade through a lot of misconceptions, and at least for me, I haven’t been successful in offering an alternative to those misconceptions. I don’t know if it’s because I’m not presenting it… articulating it well enough, or if it is just that hard people to change the way they think about illness.
Brianne: Well, and… okay, gosh, what is… there’s the name of this… the Just World Theory, maybe… I forget what it’s called, but it’s basically just a thing from… an academic way of framing that people want to believe that the world is just, and so… it’s a very neoliberal idea, right? And so as a result. We really genuinely want to believe that bad things only happen to bad people, and so the flip side of that is that you couldn’t possibly get sick in a way that you wouldn’t be able to fix it if you just try hard enough. It’s so deeply ingrained because healthy people want to believe that if they ever get sick, they’ll be able to fix it. And it’s understandable, but it’s shitty.
Carmen: Yes. Yes. To both of those. One of the things that came up in my research interviews was people who got ME who had originally believed, “If I exercise and eat healthy, it will protect me. If I exercise and eat healthy and take care of myself and live a healthy lifestyle, it is impossible for me to get sick.”
Carmen: “I will always be healthy because I’ve made these decisions.” And then to get a chronic illness like ME and have to deal with changing the way you think and the way you view the world is really, really hard.
Brianne: It is. It’s really hard. And I think… yeah.
Carmen: Sorry, go ahead.
Brianne: No, I was just, I was going to go more off track, so if you had a thought on this track, go ahead.
Carmen: I understand why it’s… I’m losing… I’m having a brain moment. What is the word? It’s comforting to believe that certain things can protect us.
Carmen: We want to be safe and to be okay. And so it is…
Carmen: There’s a certain word that I want that is not coming up. It’s very tempting to think that we can protect ourselves by eating right and exercising or doing all of those healthy things, which those are all good. Those can, depending on the situation, all those things can bring really good benefits, but it’s not a shield.
Brianne: Totally, totally. And they’re still… being able to do those things is also rooted in privilege in so many different ways. And that’s another thing, gosh.
Carmen: So when I get really bummed out about how terrible all of these things are and just the volume of doctors that have treated people terribly, I have found that going on Twitter and following young up-and-coming doctors who are pretty social justice oriented really helps me. Not that it makes everything okay, but it does help me see like, “Oh, there are people who recognize that there’s a problem in the system, are part of the medical system themselves. And are actively not being part of the problem.”
Brianne: Yeah. Yeah.
Carmen: I need to see that at least occasionally.
Brianne: Yeah, yeah, yeah. I mean, it’s really easy, and I… in my own language, I absolutely fall in this trap all the time. It’s really easy to think of it as like, “Well, there’s patients and then there’s doctors and it’s just these two monoliths.” And that’s… I know that that’s not true for a variety of reasons, but yeah, it’s helpful to be like, “There are doctors who recognize that there’s a problem and who care that there’s a problem.” And also I do believe that most doctors go into medicine because they want to help people and understanding more about how that works systemically… I read a book recently called the digital doctor, and it’s about how technology has impacted medicine, and it’s in all these different sections, and it’s super interesting. So it talks about… now I forgot the word, but just how digital charts and then… as they become patient portals that we have access to and how all of this has changed fundamentally what a doctor’s job is and how much time they even have to relate to patients. And when you think about how much time they have to spend arguing with insurance companies in order to even offer the treatment that they think that you need.
Carmen: Yeah. Doctors are put in a really… they’re between a rock and a hard place. The system does not work for them to do their jobs well.
Brianne: No. And so being… again, having the cognitive energy to think about this stuff and learn about this stuff is also a luxury, but adding more nuance to the picture, and I love… I would love to see a list of some of your favorite doctors as an after part that we can share with this of who… so think about that because that is so great. That was a really good question. but yeah… oh, I had one other thing that’s a little bit of a backtrack that I was thinking of is that sometimes when people come at you with, Have you tried positive thinking?” Or whatever it is, it’s also that coming up with a way to respond to that that is… I’ll say educational. So you know, half the time it’s like, “Oh, I don’t have any energy for this, so I’m just going to benignly agree… not challenge that position at all and let them go about thinking of it because I actually don’t have an obligation to educate anybody, and it’s a ton of emotional labor.” I know that’s the path of least resistance that I have certainly taken, and I think a lot of people take. And then on the other hand there’s clapping back really loudly, which I think maybe sometimes can work and sometimes can’t, and then this thing that I think you’re kind of talking about of, of going, “Well, at this moment I have the information and I have the space in my brain and I have the whatever to try to really engage a conversation about this and challenge their misconceptions.” That’s powerful work, and it’s also one-to-one, and it’s so tiring.
Carmen: It’s exhausting.
Brianne: It’s so much emotional labor because it’s so personal. I can’t have a conversation like that without walking away feeling a little bit like, “This person thinks that I don’t want to get better.”
Carmen: Yeah. Yeah.
Brianne: And I don’t think that that’s what most people mean when they ask that kind of a question, but it’s what they’re saying. And I think that’s another just rich open question mark of, how do we have these conversations when we want to be having them, which we have no obligation to do, by the way.
Carmen: Right. And keeping a very firm boundary of, make sure that your health needs are met first. You are not required to educate other people, but in situations where I am in this place of like, my symptoms are mild enough where I’m able to do quite a bit.
Carmen: And I have also experienced… I have experienced chronic illness enough that I understand that world and the language and the… I’m embedded in that. But I’m also just healthy enough to go to graduate school and do all of these things. I feel a responsibility, for sure, to use that in a productive way.
Brianne: Yeah. Yeah. I hear that. And I also find… it’s interesting when you have a barrier kind of. So I don’t… I’m curious if you feel this way about your research. Cause now I feel this way with the podcast. I have this buffer space of credibility almost. Or of experiences that I can draw on so that I’m not just arguing with somebody about my own health, I can be like, “No, here are some patterns and here’s some systemic stuff and I can point you to bigger resources.” That’s a really different conversation than like, “No, I don’t want to eat more kale because that’s not going to make a difference.”
Brianne: And you have to… I think you have to be resourced in order to create a buffer like that, if that… does that make any sense?
Carmen: Yeah. Yeah, it does.
Brianne: Yeah. It’s interesting.
Carmen: There’s a lot of work to do, and it takes a lot of different people. Even doing my research and realizing that I need people that are more… have more of a brain for quantitative research to do those prevalence studies so that I can draw on that and do my own qualitative work, and it takes all types of experiences and different types of thinking and different ways of research and different people bringing their stories to the table. I can’t… one conversation with one person…. I’m not going to convince them in one conversation, but I do think over time, having multiple conversations in multiple modes of communication can create some good change.
Brianne: Yeah. Yeah. And I love just having resources for that of like, “Oh, you are a very analytical person who will never be swayed by individual stories, but here is a data-rich book. If you want to know more about what I’m talking about, checkout Doing Harm by Maya Dusenbery.” Compared to, “Oh, you’re engaging with this on a really emotional level, check out Through the Shadow Lands by Julie Rehmeyer.” They’re different… very different books, but they talk about different parts of essentially the same problem and different people are going to have different reactions to that. More books please, publishers, on these topics.
Carmen: I have noticed an upswing in that. I’ve noticed more… this kind of sub genre of doctors who have gotten sick and are now writing memoirs about it… love that genre. And then also just more books from people who have chronic illness and are either writing about the data of it or the personal experience of it. We need all of that.
Brianne: Yeah. Yeah. I’m excited as my reading list for this kind of stuff expands. I did… I asked people on Twitter recently for their favorite books about chronic illnes.
Carmen: Yeah I saw that.
Brianne: And it was very caveated cause I was like, “I don’t want memoirs that end in remission,” because some of those are really great, but as a genre, it’s not… it’s telling… it’s over… okay, wait, what’s the word that I’m looking for here? It is overrepresenting one kind of story at the expense of other stories. So I was like, “I don’t want that, and I don’t want straight up science books,” because I like those, but they’re not very accessible to a lot of people. “And I don’t want, self-help books in general, so I don’t want people who are telling us what to do.” And so that was really fun cause I got some fiction, I got some other types of memoir. I think I had only read one or two books on the whole list. I was like, “This is great because it’s happening,” and it’s just… Knowing about it and especially to be able to point new people to it, which is my favorite part of finding books that I love. Yeah.
Carmen: I think my go-to is to give someone a book just because that is how… it’s a little selfish cause that’s just how I learn. But I mean, it’s a window into people’s experiences, and I really value that. As an educator and as a human, I value being able to read. I think the book that I put on your Twitter feed as a recommendation was Ask Me about My Uterus, which is about endometriosis and just covers a ton of the things that we’ve been talking about here. Having a window… I don’t have endometriosis, but I relate to a lot of things she went through. But also I get to see all of the different ways that it plays out for this author… just so powerful. And if I can give that to someone else who lives as an able-bodied person.
Carmen: Could that change some… the way someone views something? I don’t know.
Brianne: Yeah. Yeah. And make a little inroads, which is what… that feels fine in a lot of conversations.
Carmen: And breaking down those false barriers between… just like you were saying, like, “There are patients, and there are physicians and those are always different sets of people.” That is just not true. And I even catch myself in my thinking… every physician is at one point or another going to also be a patient. Over everyone’s life span, we are all patients at some point. We are all in the role of a patient at some point or another, and it’s not… I have come to view doctors and physicians more of… I don’t think that they are good or bad people. I just think they’re people. Physicians are going to act like humans, and humans are subject to all sorts of biases and all these other things, and we need to address that with the system.
Brianne: Yeah. This is something with bias… I think, and I also said something like that recently, cause I had asked people, also on Twitter a little while ago, “Has a doctor ever told you something that turned out to be untrue?” And a lot of people answered that. Hundreds of people answered that. It was… got some real traction, but then, because it got traction, people started showing up being like, “Doctors are just human. What do you expect from doctors?” And I was like, “No, no, you’re missing…” Cause of course, it’s people who don’t know me, people who don’t know the podcast, people who probably don’t know anything about chronic illness in general. I’m like, “No, this isn’t a witch hunt for doctors. That’s… we’re not naming doctors. That’s not what this is about, but if you read all of these stories, what you’re going to notice is patterns.” And that tells you about the systemic bias, and that’s what I want to talk about.
Carmen: And there’s no accountability for it.
Brianne: Yes. Right, right. That feedback loop problem again. Okay. I’ve made that noise a lot today. That’s what happens when we get into the systemic stuff. Thank you so much for taking the time to talk to me. I really appreciate your story and also the work that you’re doing. I’m excited to see what happens next.
Carmen: Thank you. I’m so glad that I got to chat with you and be on this podcast.
Thank you for listening to episode 46 of No End In Sight!
You can find Carmen on twitter @carmasophia and you can find me on instagram and twitter @bennessb. And of course you can find this show on instagram @no.end.in.sight.pod. I’ve been posting each episode as a story but haven’t posted to the main feed in a while because I’m so behind on transcripts – as you know. But of course, the whole reason that I’ve started a patreon account is to help with those transcripts, so I’ll go ahead and plug that again: it’s patreon.com/noendinsight.
Next week I’ll be talking to a woman with IBS who is also still navigating the whole diagnostic process, so make sure you subscribe in your podcast app to find out when new episodes are available. And if you’ve been enjoying this show, I would be so grateful if you’d leave a review on Apple Podcasts so that new listeners know what to expect from the show.
And in fact, I get a lot of listeners from Australia but I don’t have any reviews from Australia at all yet. So if you’re Australian and listening, I would be double extra grateful if you left a review.
As usual, don’t forget that I have a small Facebook Group called Chronic Hustlers for people living with chronic conditions who are self employed. It’s quiet but growing, and you’ll even find a few podcast guests in the group.
This podcast is supported by my cross stitch company, Digital Artisanal. When I’m up for it, I make simple modern patterns that you’ll actually want to hang in your home. I’ve got some fun fall patterns in the shop, and dozens of very simple icons that you can customize to your heart’s delight. I’d love it if you checked us out at digitalartisanal.com.