Episode 132: Cass Rush of “Trust Me, I’m Sick” on Living with Lupus as a POC

Episode 132: Cass Rush of “Trust Me, I’m Sick” on Living with Lupus as a POC

Overview

Cassandra Rush is a lupus advocate born and raised in Los Angeles, CA. In 2012, after a two-year battle with an undiagnosed illness due to being uninsured, she was finally diagnosed with Systemic Lupus Erythematosus (lupus SLE). Two years later she was diagnosed with lupus nephritis. An “accidental advocate”, she speaks out about the broken US healthcare system, with a particularly detailed lens on medical racism and systemic bias. She was recently selected as a subject in the documentary series Trust Me, I’m Sick (now streaming on SoulPancake), wherein she shares about her life with lupus. And she’s on the pod to tell us even more.

Takeaway

Transcript

Cass Rush Cassandra Rush Trust Me I'm Sick lupus SLE nephritis Uninvisible Pod Los Angeles

Lauren: All right, guys. Thank you so much for joining us. I am here today with Cass Rush. You may remember Cass from Trust Me, I'm Sick. She is a lupus patient. She's living in LA. And she's going to talk to us all about that life with lupus. So Cass, thank you so much for being on the show today. 

Cass: Thank you for having me. 

Lauren: Absolutely. It's such a pleasure to finally chat with you and have this longer discussion. And I figured we'd start at the beginning of the story. I would love for you to share with our listeners when and how you first realized that you were sick, and how you've taken control of your health since then. 

Cass: So when I was 21, I was living in Minnesota with my ex-girlfriend. And while I was out there, I ended up catching pneumonia. I don't know how I caught it; I'm from LA, I was in Minnesota, I just chalked it up to being a drastic weather change. So that basically set off this, I guess, a chain reaction of just me not feeling well for a really long time. And I didn't have health insurance. I didn't know at the time that being under 26 meant that I could be on my mom's insurance.

No one tells you these things until you're in the throes of needing health care.

So I had no health insurance, but I was going to the emergency room, I want to say once every month, telling them, “I don't feel well. I don't know what's going on. I just know like intrinsically that something is wrong with me.”

Lauren: And how many people told you it was all in your head?

Cass: Every single one of them. But my iron level was super low. So they told me, basically, “You're just iron deficient. Here's some iron pills. You'll take them, you'll start feeling better.” 

Lauren: And it is that simple for some people who have an iron deficiency. It hits them that hard, and they take the pills, and they’re good to go.

Cass: And then it got to the point where I had dropped 60 pounds in three months. 

Lauren: Oh, so that's a lot, yeah. 

Cass: And they kept telling me, “It's iron deficiency, you’re fine. It's iron deficiency, you're fine.”

Lauren: And they were probably also in a body dysmorphia place, I imagine, it being like, “You look great. You've lost weight.” Doing that thing, too, right? 

Cass: Yeah. And most people were like, “Oh, you just went through a breakup. You're just sad. You're just depressed.” 

Lauren: Or maybe I was hospitalized for pneumonia, and you should be looking more deeply into this issue. 

Cass: This was actually a full almost two years of me doing this. Well, maybe more like a year-and-a-half of me on and off telling these doctors something's wrong.

And then I had drastically dropped the weight, to the point where I looked emaciated.

And finally, it had gotten to the point where I couldn't get up to go to school. I had reached this three- or four-day period where the only thing that I could do was roll over, drink water, roll back over, go back to sleep, roll over, maybe use the bathroom if I could muster up the energy to go use the bathroom. All I had energy to do was drink water and sleep.

Lauren: You were bed-bound. 

Cass: Yeah, so finally I called my mom and she was, like, “I'm just going to take you to Cedars.”

Lauren: So you went back home to LA at this point? 

Cass: Yes. So I had moved back home. I had been going to Kaiser before that, and my mom was just, like, “We're going to take you to Cedars. We're just going to go to Cedars.” And basically everything after that went from zero to 100 super quickly. Basically, they told me I was on the brink of death. They told me my hemoglobin was at a 6. Which, if you know what that is? 

Lauren: That’s low.

Cass: Yeah, a normal one is 13. So I was a little bit under half of what my normal hemoglobin should have been. They couldn't explain what it was, what was going on. My mom basically told me afterward the only reason that they had agreed to admit me was because they thought that I had something that hadn't even been discovered yet. 

Lauren: Oh, wow. So they were more interested in you as a study. Without your prior permission for them to think of you in that way, too. 

Cass: Yeah. I was so out of it, I really can barely even tell you what happened. Everything feels like it was an out-of-body experience almost.

Lauren: You were halfway leaving your body.

Cass: Yeah. So then one of the head doctors at Cedars came to see me.

And at this point, I was seeing 20 doctors a day. They were literally bringing their whole classes of interns in to talk about my case every morning.

So finally the head doctor comes in. I had gotten to a point where I'm tired of being stuck with needles. They even gave me a bone marrow biopsy, which if you ever have seen one or had one, you know they're super painful. 

Lauren: Yeah, it’s a spinal tap, right, for the bone marrow? 

Cass: Yeah. And one of the doctors came in, and she was just, like, “Look, you're dying. And the only thing that I can tell you to do is to just keep trying. Because the number one way that this ends up getting the best of people is that they just give up.” She had my mom leave the room to have this conversation with me. And finally, two weeks and a million tests later, they were, like, “Oh, it's lupus.” And then my care just dwindled down. 

Lauren: Dropped off. 

Cass: I was only seeing the one rheumatologist and maybe not even the attending, maybe just the the resident. 

Lauren: So as soon as you weren’t interesting to them anymore, they stopped caring and showing up. 

Cass: Yes. They put me on a different floor in a different part of the hospital and everything. 

Lauren: Because it almost sounds to me like you got sick because doctors wrote you off. And then you got a diagnosis, and they wrote you off again. 

Cass: Yes. So after that, they put me on antibiotics. I can't remember what the antibiotics were for. And gave me the regular lupus pills. Then I got home. And then, weeks later, my face had blown up. 

Lauren: You got the malar rash, is that what it’s called?

Cass: No, I mean, my face had blown up in an allergic reaction. 

Lauren: Oh, man. Oh, okay. 

Cass: It turns out that I'm allergic to the antibiotic that they gave me. And also I had been having trouble breathing. Going up the stairs, I was out of breath. It was my mom who noticed it. She was, like, “Did you go outside? Did you go for a walk or something?” I was, like, “No.”

She was, like, “You just walked up the stairs? You're heaving like you can't breathe.”

So then I went to the hospital. They put me on an oxygen tank. My oxygen was so low. And then they did a lung biopsy and came to find out I had a hemorrhage in my lung. So then I had to have chemo.

Lauren: Now, why would they treat that with chemo? 

Cass: Basically, the chemo was to stop the bleeding. When you have a blunt force-like trauma, when you have any type of trauma, in certain cases, they'll administer chemotherapy to you. 

Lauren: Rather than invasive surgery. Right.

Cass: Yeah. So it was for the bleed and then also for the lupus flare that I was having. Because if I'm having a really, really, really bad flare, they'll put me on Cytoxan. So we started off with that; it was a six-week session of intensive chemotherapy. 

Lauren: Wow. So you were in the hospital for six weeks that whole time? 

Cass: The first time I was in the hospital for two months. And then the second time, it was only about a couple of weeks to a month. 

Lauren: I don't even want to ask you what the bill looked like after that. I’m just imagining it.

Cass: I can tell you! That’s a good story, too.

Lauren: Well, hit us. Hit us with that story. Because were also mentioning that you were about 21 when you first got sick.

Cass: I was 22. 

Lauren: 22 and you didn't know you could be on your mom's insurance. No one's telling you.

Cass: I didn't know any of this. So, Cedars actually has a clinic that comes to their hospital every Monday, I believe, for rheumatology. It's a free clinic. That's the one that I was going to after they released me while they figured out my health insurance and everything else. Because now they could declare me as disabled. So as I'm walking into the clinic to go to my appointment, this lady comes up to me and she’s, like, “Hi, you're Cassandra? I'm from the financial department of Cedars. We just wanted to speak to you about your bill.” So I said, “Okay.”

We walked into this tiny, tiny little room, down a dark hallway. It was real horror movie, so I should have known how this was going to go.

Lauren: Yeah, they set the scene for you! 

Cass: So I sit down in the chair. And she's talking to me, she's like, “I just wanted to briefly go over your bill. And then perhaps we could talk about payment plans.” So I glanced at the computer behind her and I see my name and I see a number. And I’m, like, “Let me stop you. Is that how much I owe you guys?” And she’s, like, “Well, yeah.” I’m, like, “That says $550,000. I am 22 years old. I just got diagnosed with lupus.”

Lauren: And now I’m disabled.

Cass: “You know that I have no health insurance. And you are going to sit here and look me in the eye, and tell me that you could put me on a payment plan for something that I wouldn't be able to pay in five lifetimes in the situation that I'm in right now. I'm gonna just go.”

Lauren: How else do you process that? 

Cass: Because it's like, you get hit with a chronic illness. And they basically expect you to learn everything about this chronic illness and how to care for it, to do all these things basically by yourself. Because, let's keep it real. Most doctors don't give a f*ck … excuse my language. 

Lauren: Oh, no, you're allowed to curse on this show.

Cass: Let's keep it real. They don't give a f*ck.

In the eight years that I've been doing this, just being a Black woman in this system is traumatizing.

It's traumatizing. 

Lauren: Yeah. I mean, we're gonna talk about that for sure. We're gonna get there. Were you able to resolve that? Or is that a debt that's still hanging over your head? 

Cass: So, what ended up happening was, they did a retroactive-like situation with my medical. And they covered most of it. But I still owe like $50,000. 

Lauren: And this is something, eight years later.

Cass: Yeah, that's still there. 

Lauren: So, not only has your body betrayed you and put you in this situation where you are disabled, and dealing with a health condition that no one's giving you a playbook for …  you're also, eight years later, still in major debt, because of the way the system is rigged in this country. 

Cass: Yes. 

Lauren: That's terrorism. I mean, you're living with financial stress because of getting sick, and there's no way you could have controlled that. 

Cass: Yeah. I mean, it's a debt that I have to pay. I had no choice. The debt I have in school, that's an insurmountable debt that I’m having to pay. But at least that's a choice that I made. But in this situation, this is completely beyond my control. This is like a God-given situation.

I couldn't say, no, I'm good. I won't get care for this. Because if I didn't get care for it, I would have died. 

Lauren: Well, the other thing is, if you go on disability, you're only allowed to make a certain amount of money. So how are you actually ever going to be able to pay something like that off? 

Cass: Exactly. Me being an optician, it’s still not a livable wage, but it’s enough where now I'm in a situation where I was making too much money. They cut off your monthly benefit. And then if you make too much money, they cut off your Medicare because they pop up with these premiums that you never knew that you had. 

Lauren: So if you make too much money, then you can't ever get ahead. Because you're always going to either owe or have to be under a certain poverty line. 

Cass: So they popped up recently with a $1,000 Medicare bill for premiums that I didn't know that I had. Because I was making too much money at my job. 

Lauren: So what's the incentive to even work?

Cass: Yeah. I mean, the monthly benefit is nothing. So it's like, if I don't have a job, I'm struggling. If I have one … Now I'm at the point where I don't have that job. And I don't have that insurance that I can pay into through them anymore because of COVID.

And now to talk to my expensive Beverly Hills doctors that I got on Medicare, I have to give them $200 for a 10-minute video session.

Lauren: Oh, this system is so broken. We're also going to talk about that more. But I just want to dig into a little bit about your relationship with your mom, because it sounds like she stood up for you early on, and helped you get your diagnosis and get treatment and really help take care of you. Do you find that that advocacy role that she helped play for you … how has that impacted your relationship? And also, how has this changed your relationship with self as you've had to step up and learn all of these things — learn what lupus is, how to treat it, how to pay for your bills — even if the system's rigged so you can't pay them and learn to stand up for yourself in medical care. What has that whole journey been like?

Cass: For me and my mom, if anything, it actually brought us closer. My mom deals with her own chronic illnesses, she has really bad endometriosis. And when I was younger, she got in a car accident and now she has a metal plate in her neck. So I got really lucky in the way that my mom is experienced in this system. And also she's willing to yell at anybody who needs to be yelled at for me. Because in a lot of situations … people will tell you that you need to be nice in these situations, or you need to back down sometimes, because the doctor knows best. No. I will be the first person to tell you that there's always going to be a doctor or a nurse or somebody in the administration that needs to be yelled at. So for me, it was important for me to know when I need to stand up for myself. She was really good at teaching me that. And in terms of my relationship with myself, it made me have to grow up in ways that I don't think I would have grown up until I was in my 30s. And it taught me a lot about myself. It taught me a lot about who I am as a person, what I'm willing to take, what I'm willing to do to get things done. It taught me a lot about my relationship with people. I lost a lot of friends. It taught me where I was with mental health in the beginning, when they were telling me all of these things about how it was just iron deficiency. They actually put me on a 5150 (California law code for temporary, involuntary psychiatric commitment) because I was so depressed that no one believed that I knew something was wrong with me. There's something about when you're sick, and someone keeps telling you that you're not that sends you into this deep, deep depression. 

Lauren: Yeah, absolutely. Aside from the fact that this is a huge adjustment that you're having to make, to understand your body with a new narrative. And that in and of itself requires mental health support, because it's changing your perception of who you thought you would be, right.

Cass: I think a lot of the time also with chronic illnesses, people want to hear the journey, people want to hear how you got there.

People want to hear the diagnosis, because that's the exciting part. But everything after that, your day-to-day life, that's all depressing to them.

They want the inspirational story. They don't want the ‘this is my life now’ story. 

Lauren: And it's not even necessarily an inspirational story. to diagnosis, as we've learned. It’s often really coming up against pushing the rock up the hill endlessly. You sort of become Sisyphus in your own story, don't you, when you're dealing with this. Not only because of the way the system's rigged, but also just because of learning your body from a whole different perspective. This is something that we come across on the show a lot, this idea of heroism and disabled placement in the hero storyline narrative.

Cass: Yeah, I think it's like with Chadwick Boseman … “he did so much while he was so sick” … like, it's something to aspire to.

Lauren: He did his job like everyone else does!

Cass: We need to be aware that he didn't tell anybody about it because of his job, because of the stigma around illness. Because how do we know that he couldn't have done those things if we did know. There's a part of his journey that we'll never know. 

Lauren: Yeah. But the other part of that is also, how much of people's private stories should we be privileged to know? Is it any of our business? 

Cass: That’s also a super good point. Because you're not obligated to share your story with anyone. 

Lauren: And when you do share your story, if you do share your story, you need to find ways to maintain control of your narrative.

Cass: So you become the face of that disease now.

Lauren: He’s the face of colon cancer right now, for sure. It's a really tough one, isn't it. Because it's this weird balance of, I'm not a hero for surviving. I get out of bed every day, just like everyone else. But also, if I had told you, you would have judged me, and this is ableism in the world. In a world that's designed in a systemically oppressive way. 

Cass: If anything has taught us that, it's this quarantine. It's this pandemic. “I don't care how many f*cking old people or how many crippled people die. If I catch it, then whatever.”

I just want to get it over, I've heard a lot of people say, I just want to get it over with — as though this is not something that you can keep catching. 

Lauren: We don’t know that!

Cass: Not taking into account that while you're asymptomatic, if you're just all willy nilly out here, like … I'm gonna just go catch it, I don't care. That also means that you're seeing other people, you're seeing your friends, you're seeing your family members. God forbid you kiss Grandma. Because your family doesn't give a f*ck because of politics. A pandemic is not a political stance. 

Lauren: Nope. It's just science, like climate change. I think it's also that able-bodied people don't hold their health sacred because they just don't even think about it, do they, in the way that people like us do. 

Cass: That’s a very, very, very good point. It's just when you've been healthy your whole life, thinking about your health until you're forced to feels like someone's imposing on your life. So a lot of people are just like, well, I'm just gonna work against it. I've had a cold before. It'll be fine.

Lauren: Yeah. But modern diseases and modern problems in modern environments … we don't know enough about root causes. But the bottom line is, when you are a healthy person, unless you lose your health, you don't know how precious it is. I'm sure that plays a role in your day-to-day, particularly during the pandemic. What is a typical day looking like for you as someone who's living with a compromised immune system? Who's on immune suppressing drugs. How are you balancing the demands of work and life now, let alone when you were first diagnosed, as you manage potential flares and symptoms?

Cass: ...

Well, in the last few years, as I closely approached 30, it became clear to me that I wouldn't be able to live my life the way that I used to.

Whereas, when you're 23, with lupus, you’re, like, well, I'm gonna live normally, but with a few tweaks here and there. You're still trying to go to happy hour with your friends. And then as you get older, and your work days get longer, your body gets more tired, you're most likely not the same weight you were at 23. It almost feels like you have become a completely different person. I feel like I'm a lot different than most of my friends, just in the way they were allowed to live their 20s. 

Lauren: Yeah, you had to mature faster. 

Cass: Yeah, so I've had situations where I couldn't keep jobs for long amounts of time, because I can't stand all day. Or sometimes you'll end up in a situation where you have a job, and you'll end up having a flare. And now you have to take two weeks off. But now you have to explain why you need these two weeks off. And now you have to disclose to your employer, potentially, if you didn't already, that you're disabled. And then that becomes a whole thing. And then they will find an excuse to fire you because you're disabled. They'll say it was attendance. Or they'll say that you're just not good at your job. So it becomes one of those things. And that was really the reason why. It's crazy that you have to have a degree to sit while you work. I feel like that's such a simple statement! 

Lauren: But it's so true. So true. And even then, sometimes you need two or three degrees! 

Cass: Yeah. The less money you make, the more they work you to death. And in the beginning, all I had experience in was retail.

Lauren: You're on your feet in retail.

Cass:  Yeah. So I was working retail with lupus. And whether you're a manager or whether you're a sales associate, you’re on your feet. You're running around all day. Not even just that, but in the winter months, and during flu season, you're exposed to a bunch of different people. So when the pandemic rolled around, I was already one of those people who always had hand sanitizer. It was always, like, oh my God, please don't talk to me, random stranger. 

Lauren: In some ways, we were better equipped, Spoonies were better equipped for lockdown and quarantine and social distancing.

Cass: Yeah. But in terms of quarantine, I don't go anywhere. I only see my family. I actually, really randomly, started dating someone during quarantine. 

Lauren: But if it’s someone that you have an agreement with? That you’re, like, we have to keep each other's bodies safe. As long as you can communicate that.

Cass: Yeah. It actually turned out that she also has something chronic.

Lauren: So she gets it.

Cass: And when it came to us agreeing to meet, it was, like, okay, the first time we meet, let's go to a park. Everybody got COVID tests, even though I haven't been anywhere in months. 

Lauren: Yeah. But I mean, it's fair enough because you've got to look out for your health.

Cass: Yeah, so it’s just really crazy to think about all of the things that I considered obstacles before when it came to work/life balance, and how now I'm going to have to consider all of those things post-quarantine. It becomes a question of, where can I work. Because before, I can go find some, like, whatever job. But now it’s, like, okay, how many people am I going to interact with daily?

How long am I going to have to wear a mask as a chronically ill person, as opposed to someone who has a normal immune system? 

Lauren: But also, what employer has a right not to offer you remote work opportunities at this point, either?

Cass:  Exactly. And also in terms of school, you've been telling these disabled people forever that none of these things are possible. And you've now done all of them. 

Lauren: Ain’t that a kick in the head! I'm glad you bring this up. Because everyone I've talked to since COVID started …there’s been the discussion of disabled people who have asked for these accommodations for generations, and they were never given. And suddenly, they're being given with ease. I've been really angry about it. I don't think anyone else who I've talked to has been quite as worked-up about it as I am, except for you at this point. I mean, you're being very calm in your delivery. But I know, I'm hearing. It's the irony of ironies. And you just want to sort of break out into a Alannis Morrisette over it’ it is just so ridiculous that this shouldn't happen before, when telecommuting has been a thing for the last 20 years. 

Cass: I mean, that was primarily the reason why I wouldn't go back to school. I don't live in a place that's near any schools. And I don’t always have the energy to wake up at 8am and travel across the city to sit in a class for two hours, and then go back home across the city. 

Lauren: It’s a lot of work. 

Cass: One of the things I've said in the documentary that I probably wouldn't have said if I wasn’t in the middle of a flare when the documentary was happening, was people don't realize how much energy it takes for us to do such small things. One day, I had a week where my energy was low. And so my friend just calling me to ask me, “Do you want to go to dinner?” Me just thinking about getting up, putting shoes on, walking into the restaurant, sitting down, having an engaging conversation, getting up, walking back to the car, walking back to my apartment? That much energy made me tired even just to think about it.

Lauren: This is like emotional labor, right? Talking about this stuff and reliving this stuff, and being on pain meds. But it's also that it takes those of us who are living with chronic illnesses and disabilities a lot of energy to do things that it takes other people small amounts of energy to do. Telecommuting is no longer an option not to offer.

Cass: Yeah. It's just, like, okay, well, you could have done this years ago. And even if you just made it something that's literally only accessible to a disabled person … like this disabled person has to go to their doctor and get a doctor's note and tell you, hey, I can only attend this class online. Even if you just did the luxury of just recording it on audio for someone. That could have made the difference in whether somebody gets a degree or not. And that then becomes a question of ableism.

Lauren:  Yeah. And that it's all for the bare minimum. Like what we're getting now, in terms of accommodation, is barely scratching the surface of the bare minimum. That there's so much work still to be done. 

Cass: Still.

Lauren: I'm wondering … you mentioned very early on in this conversation how many people told you it was all in your head. And that your relationships have shifted since you've gotten your diagnosis. Have you been in situations, or can you talk to us about the situations you have been in, I should say, where you have been forced to validate the existence of your symptoms or diagnosis to people who didn't understand it because they literally couldn't see it? That because you're living with this invisible diagnosis, you had to validate yourself for other people?

Cass: ...

I had a friend who was very adamant about the fact that if I became vegan, and started doing a certain smoothie every day, that I could cure my lupus.

I was having a really bad flare, and I was having chemo at the time. And she said, “But why are they giving you chemo?” And so I’m trying to explain it to her, the reasons why they're doing it. And she’s, like, “I don't know, it seems like they're just pumping chemicals into your body for no reason." 

Lauren: So blueberries would be better?

Cass: And I'm trying to make her understand that chemo is the last resort for a doctor. They don't want to do it. I've had doctors look me in the face and tell me, “I don't want to do this.”

Lauren: And you're also someone who has faced your mortality. I doubt your friend who was encouraging vegan smoothies had ever been in a situation where the future of her existence was put into question. But you have really been there. 

Cass: I was actually thinking about it as we were on the preface of this interview. Because like you said, it is emotional labor to talk about these things. It does put me in a place where I do have to go through the history of my story all over again. And there was a time where like, I couldn't do that. So thinking about that, I started thinking … you are one of those rare people who had a near-death experience. And until I really think about it or say it out loud, I've never thought of, on just a psychological scale, how that changes a person. I've been to therapy. I typically just talk about living with lupus. But there's a part of me that's scared to address that.

Lauren: I really appreciate you being open about where you're at with that. Because I think it's a really good point you make. People often come on the show, as well, and they've gone through that emotional journey, or at least some big part of the emotional journey, as you have. Where much has been faced, which is why we can talk about it. But there is definitely stuff that we're all still working on facing every day. And I think the mortality piece, that's a really big one. As someone who has been in your position, did you also ever have doctors say, “Here’s some mental health support. You've knocked on death's door; we'd like to offer you therapy.” 

Cass: Well, actually there was one day where I flipped out and told them that no one could touch me. And so the doctor walked in, shoved some Ativan into my arm. And then another doctor came in when I finally woken up.

And I want to say, for at least six months they would send a doctor into the room and ask: am I being abused at home?

Lauren: No, I'm being abused here!

Cass: Do I have something going on in my life that makes me like this? And I'm looking around, I’m, like, I'm in a hospital! What do you mean, do I have something in my life? 

Lauren: This sort of leads me into my next question … because I'm wondering what part of their bias that came from. Because your experience in the healthcare system … you are a queer woman of color. I'm wondering how much of your identity you think has played into the way others have treated you. Because the idea that you are someone who stands up for what you need to stand up for now … as soon as you told me that, I thought, I bet she gets the ‘angry Black woman’ thing from people. How often is that happening to you? And do you think that your experiences would have been different if you presented differently — as male, as white, as something other than what you are? Which is wonderful, by the way, and screw anyone who doesn't think so! But this is the reality. 

Cass: The most discrimination I faced, being the angry Black woman, is mostly at work. 

Lauren: Oh, interesting. 

Cass: Which is …

Lauren: … a problem in and of itself?

Cass:  That's an issue, but then also it does affect how I deal with my doctors. During this whole situation, I want to say since I was diagnosed, since that very first flare, my very first serious flare … I have chronic back pain. And in the beginning, they didn't really want to give me anything. 

Lauren: Well, first they thought it was in your head. And then they sedated you. I mean, ‘she must have been hysterical.’ This is the narrative about women in the healthcare system! 

Cass: Finally, I got a doctor of color, a woman of color. And she was, like, “Let me prescribe you some pain pills.” She was the first doctor who had agreed to give them to me. I'm lucky in a way … I'm light-skinned, I'm mixed race. And a lot of the time that does work in my favor when it comes to certain doctors. For the vast majority, though, I'm still a Black woman. Regardless of being Black, I'm a woman of color, obviously.

I've dealt with doctors who didn't listen to me. I've dealt with doctors who were blatantly rude to me.

In the beginning I was really thin. And then as I gained weight, and as I became overweight, then it became, “Well, your pain would probably stop if you lost weight.” 

Lauren: How would you like me to do that? Also, don't comment on my body unless you live in it. 

Cass: So then that became a different set of issues because then I have to explain to doctors … all of these same issues that I have right now, I had when I was thin. So you can't tell me that these are things that are happening because of my weight. Yes, of course, I would gladly lose weight if that was something that was easy for me. But also, if everything that I was doing while I was thin, I'm still doing now, and I'm still experiencing the same things, how do you know that my health would change? 

Lauren: Because I’m biased. And this is my opinion.

Cass: Now you're just fat phobic. That's just where we are, most doctors are. 2014, I was working downtown; it was two years into my lupus diagnosis. And I started having these crazy gastrointestinal pains. For the first five years of any illness, as I'm sure you know, the first five years are the worst. I went to the hospital; I had very obvious IV bruises. Everyone knows what an IV bruise looks like.

Lauren: Well, some people don’t. And those people are wrong!

Cass: It had gotten to the point where my pain was so bad that I was literally laid out on the floor. I couldn't move. So they took me to Presbyterian in downtown LA. And I had this nurse, and she just kept pestering me with all these questions. And I kept trying to explain why I'm not responding to her because I'm literally in so much pain, I can't speak.

And she grabs my arm, and she sees my bruises. And she’s, like, “Are you on drugs?”

She's a nurse. And I'm looking at her. And then I just stopped responding. 

Lauren: Was she also a white woman? 

Cass: No. She was a Latina woman. 

Lauren: Oh, interesting. Okay. So she was also a woman of color. But she still had her own prejudices. 

Cass: Yes. My grandma happened to call me. My grandma is older, but she was a registered nurse for 45 years. In very rare instances in my life have I ever heard or seen my grandmother visibly fuming. And that was one of the few times my grandma actually got up and came to the hospital, because she was, like, “I cannot f*cking believe that this nurse would have the audacity to ask you if you're on drugs.” Oh, she was so angry. I felt validated, because a part of me was, like, well, I do have these bruises on my arm. Maybe they do look like track marks. I am downtown. I don't know. 

Lauren: But if this woman had looked at your chart, she would have known that you had lupus and had been on various treatments.

Cass: Yeah. 

Lauren: So do you think i if you'd been in that situation as male, or presenting as a white person … do you think that you would have had the same questions? 

Cass: No. I went to Cedars recently, I want to say six months ago. Because I was in a lot of pain. I felt like I was having a really bad flare. And I sat there for three hours in that bed. No one gave me any medication in that three hours. So I'm basically sitting there crying. And then here comes … they wheel in the old white lady into the bed next to me. And she's talking about how her wrist hurts really bad. And are they gonna give her something for her pain? And 20 minutes later, the man comes in with some Dilaudid.

Lauren: And you're still waiting? 

Cass: Yep.

Lauren: Would you say this gender, racial, even body image-related inequality in the healthcare system is a public health crisis? 

Cass: Yeah.

There was a TikTok of this woman showing her nurse book. In her book, it said that Black people feel less pain. 

Lauren: Are you for real? 

Cass: No, I'm not joking. 

Lauren: We know that this is pseudoscience, that it's made-up bullshit that's a holdover from slavery.

Cass:  it's literally made the f*ck up.

Lauren: I can't believe textbooks have that kind of information. 

Cass: The textbook says Black people feel less pain. 

Lauren: So we are teaching systemic racism. 

Cass: Yes, they're teaching it. They're teaching it, and I feel it when I see certain doctors. I was admitted into the hospital last year because my doctor wanted me to have some tests done. So I was there overnight. I was telling them, “Hi, you're supposed to give me the pills that I get when I'm not here. That's the rule.” But they wouldn't give me the two Percocets that I take a day. They sent me a nephrologist because I have lupus nephritis also. So they sent me the kidney doctor, he’s an older white man, works at Cedars, and he walked in and immediately started giving me a speech on the opioid crisis.

Lauren: Oh, my! Oh me, oh my. What a charmer.

Cass: He gave me a 20-minute speech on the opioid crisis. My rheumatologist that I see now, her name is Dr. Scaramangas. She works with Dr. Venuturupalli, the famous rheumatologist. And so I go to his clinic … well, I used to before I lost my health insurance. She's also a woman of color. So she walked in the next morning, and she's talking to me, she's literally leaned over my body, taking my vitals … and this same white man walks in and just starts talking at both of us. Her whole face changes as she's leaned over me. And she stops and she turns around, and she’s, like, “Who are you?”

Lauren: That's amazing! I love her for you. I love this. I love this journey for you. This is great.

Cass: And so he stops, and he’s, like, “Who are you? And she says, “Can can we talk outside?” And so they go outside … I think she was gone for maybe 10 or 15 minutes. I don't know what was said.

She comes back and she says, “So you won't be seeing that man anymore.”

Lauren: Oh, how wonderful. That’s what real medicine’s like. That’s what it looks like to stand up for your patients. 

Cass: From that moment on, I was, like, I ride for this doctor. I will never leave her. She's with me for life. 

Lauren: Yeah. Because she stood up for you. 

Cass: I had to pop off on that office the other day because she wants me to get Rituxan. I applied to this foundation that gives them to you for free. And they approved me. But it turns out that that doesn't cover the actual office visit fee. So when they called me and told me that, I just said, “Well, cancel my appointment.” So then another lady calls. I kid you not, this lady's name was Karen. I'm sorry, Karen, if you ever hear this. Karen, you are about to get roasted. So Karen calls me, and she tries to tell me that they got the medicine from the foundation. But they can't do anything with it. They can't send it to Cedars for me to get charity care and get the infusion there. Because the foundation already sent it directly to them. So there's no way for them to transfer it or to send it back. 

Lauren: Well, that doesn’t make sense.

Cass: So I’m, like, “That sounds like a y'all problem, not a me problem!” So we're in a conundrum because they can't give me the medication. She’s, like, “So I'm just wondering, can I set you up with a payment plan? Can I have you apply to these foundations to see if they'll pay for it?” Etc., etc. I’m, like, “All right, go ahead and hit me with the amount of this visit.” Keep in mind I have to have one, then I have to have another one in two weeks. And then these are continuous, maybe two times a year. And she says it's $600. And I started laughing. I literally started laughing. And she’s, like, “Well, I mean, it's usually $2000.”

Lauren: Neither of those are good numbers when you've applied for something for free, because you can't afford it,  period! 

Cass: ...

I’m telling her, "That doesn't make me feel better! I can't pay for that. I can't keep telling you guys this."

And so it turns into one of these things where she is now telling me that she's just calling me to help me. But it seems like I'm really irritated. So I tell her, “Let me tell you the situation that I'm in. I am a Black woman with a chronic illness. I have just lost my job. I just lost my health insurance. And now you're calling me asking me for money that I don't have. So you tell me why I seem irritated.”

Lauren: Good for you. 

Cass: She's just, like, ‘Well, let me talk to Dr. V. Let me see what he says.’ Yada yada. She calls me 15 minutes later. And she says that Dr. Venuturupalli told her that we could do it for free. 

Lauren: Then why did she even call you in the first place? That is a y'all problem. Why do you need me to chime in on how I don't have the money to pay for this, and you need to work it out. 

Cass: So I brought that up to say that that same doctor, Dr. Scaramangas, who popped off on this other doctor for me … she called me personally to say, “It seems like you've been going back and forth a lot. So I just wanted to personally check in with you, and tell you like how this is going to go.” Yes, I hated paying that $200 …

Lauren: Sure. But the fact that she's calling you herself. She's removing uncertainty. 

Cass: Yeah, the thought of seeing any other doctor, knowing all of the traumatic things that I've experienced before. It truly breaks my heart that I can't see her. And it brings to the forefront all the times that I've been told that I wasn't in pain, how careful I have to be in literally every single situation I've ever had to ask for painkillers, just so they won't put in my chart, “Potential drug seeker”. Everything I phrase has to be specifically phrased. I tell this to all of my Black friends, “Don’t ever walk into a doctor's office and specifically ask for a certain painkiller. Even if you know that it's the one that works. Even if you know that every other one gives you a migraine, even if you know that any other one will cause some type of reaction … it doesn't matter. You have to let them run down the list until you say, ‘Oh, well, that one usually works well.’” 

Lauren: You have to make it look like it's their idea and not yours. You have to pander to this racist ideology that persists throughout the system. 

Cass: Yeah. My wife, friends … “I’ve got a sprained ankle. So my doctor gave me some Vicodin.” And it’s, like, oh, I have to break somebody's leg to get some Vicodin. And Vicodin is like the f*cking lowest class of opioid you can get to. 

Lauren: Not to mention the fact that the opioid crisis itself is a problem that was created by white people, because it was created by the CEOs of Big Pharma. Let's be real about that. It's a vicious, vicious cycle. 

Cass: What does that have to do with me when you guys were never trying to give me the painkillers that led to that addiction in the first place? You're automatically labeling me as a drug addict. My painkillers, I cannot be on them. It sucks that yes, I am in a lot of pain, but I'm not on painkillers today. Aside from the Lyrica, which is like a nerve situation. I can go weeks without being on these things.

But I have to consistently worry about … okay, what if I have this high pain day and I need these Percocets, how do I go about getting them?

How do I go about asking for them? How do I explain to this doctor that even if I don't take them all the time, I need to have them on retainer? Or what about that six months where I was just in excruciating pain all the time? 

Lauren: That’s where that continuity of care … if you could make that happen outside of the health insurance system, you wouldn't have to deal with that worry now, which is an additional stressor. And stressors cause flares. How are you going to win in any of these situations? I'm also wondering … we're talking about a lot of sh*tty things about the healthcare system, because it's largely sh*tty here, especially if you have chronic illness. And if you are representing a minority in any way, shape, or form. But I'm wondering, is there anything good about the healthcare system? Has there been any part of the experience that you've had that has worked for you in any way? There doesn't have to be. Or do you think the whole thing needs to be burned down and rebuilt? 

Cass: I think it works the same way the police works. I'm gonna say yes, we need to burn it all down. But I would say the only redeeming quality is that, just having been doing this for eight years, I saw the craziest transition from when I went from MediCal to when I was put on Medicare. Because Medicare opens that door to all the doctors that you didn't even think existed. I originally got Medicare in 2016. And it allowed me to really be out here looking for the doctors that are the best at what they do. And I lucked up that I literally lived down the street from Attune Health, which is on Robertson and Wilshire. I had obviously heard of Dr. Venuturupalli. When I was first diagnosed with lupus. I went to the lupus conference that they have every year, and he was a speaker there. And since that moment, I was, like, if I can ever have him as a doctor, he’s going to be my doctor. Obviously, I'm one of the few people that one, lives in LA, and two, is able to have that opportunity to see a doctor like that. And being in a situation now where I don't have those same luxuries anymore, unless I go ahead and drop this $1500, it scares me. Because I know what it's like to not have health insurance. And I know what it's like to be placed under the MediCal system and what kind of care you get under that MediCal system. It's garbage.

Lauren: I was wondering, also, based on everything we've talked about today, and your eight years of experience now living with lupus, if you have Top Three Tips. If someone were to call you and ask you for advice tomorrow, what would be the Top Three things that you would offer as advice for someone who's living like you with a chronic illness, with a disability?

Cass: Number one is, definitely learn what your rights are as a patient. Number two, always know that you can fire your doctor. And number three, which is actually a tip that I learned from the Internet that was a that was a thread on “How to get your doctor to pay attention to you” … anything that your doctor declines to give you, tell them to put that in the chart that they declined it.

Because in a lot of situations, they don't want to put that in your chart that they said no. 

Lauren: It reflects poorly on them. It's a challenge to the ego, I think there. What about if you really need to fill yourself back up if you're in a flare, if you're feeling frustrated with the system, if you're having a rough go of it … what are three things that you turn to for joy to light you up. These can be guilty pleasures or secret indulgences or comfort activities, But they can also just be like the good sh*t that you cultivate in your life to keep you going. 

Cass: I listen to a lot of music. If I'm really sad, I watch old ’N Sync videos. 

Lauren: (laughs) That’s some inspo right there. Bye, bye, bye!

Cass: Cuz I'm a crazy … don’t tell the Black people … I'm a crazy Justin Timberlake fan!

Lauren: They know now. You just outed yourself! (laughs)

Cass: It’s not a secret!

Lauren: I feel like I watched one of your stories the other day and you were playing Justin Timberlake!  

Cass: Yeah, I'm proud of it! (laughs) And then also, I smoke a lot of weed.

Lauren: It’s great to be in California for that. 

Cass: Yeah. It really became a question of living in California. Even my pain management doctors were, like, “You should think about smoking weed.” 

Lauren: I think in many ways, it's better for you. It's less processed. It's a plant. 

Cass: So I just became a marijuana advocate! 

Lauren: Yeah, love it. No better time in the world than to be a marijuana advocate right now!

Cass: And then also, I'm really blessed where I have a very tight friend group. I have people that I've known since I was in high school that I am still friends with. And they are totally down to just sit around with me all day, and just talk, or watch a movie, or do absolutely nothing. 

Lauren: And they get it. They're not the ones that left. And the ones that leave, we don't need them anyway. But yeah, these are the right guys. 

Cass: So I'm just really lucky. Because I know there are people who don't have that. I'm just really lucky that I have these two or three friends who just are willing to listen, and they're super supportive, will sit in the ER with me if they have to. One of them will advocate for me if I really just don't feel well, and they are well aware of my situation. I have the best friends. I will talk them up until I die!

Lauren: And I'm sure they would for you. too. What is your ask for listeners who are tuning in today? What can they do to support you and the lupus community in the work that you're doing, for yourself, but also in this wider discussion that we're having?

Cass: I think it's really just a matter of just educating yourself on chronic illness in general. And being aware of invisible illnesses. For all intents and purposes, when you see me on the street, I look normal. It's really being aware, supporting places like Lupus LA who do like really small things. I recently found out that they actually have a program where they give a $500 grant to patients who need help paying for a medication or just paying for a procedure or anything. They do fundraisers. I super encourage people to volunteer at any foundation that has specifically an illness that you know about. 

Lauren: That’s a way to engage with the community.

Cass: And I encourage people to speak up about healthcare in America, because if enough people are angry about it, then they have to change it. 

Lauren: Well, we've been angry about it for a while. They have to change it. It might be slow!

Cass: It’s a matter of the right people being angry. 

Lauren: Well, that has to do with voting, doesn't it. 

Cass: It has to do with everything. I can speak about racial injustice all day. But if the white people don't care, why the f*ck are they going to listen to me? 

Lauren: But that's why this is so important. The whole point of this conversation is that everyone needs to care about this sh*t. Everyone needs to care about Black people, everyone needs to care about queer people, everyone needs to care about women, everyone needs to care about the state of medicine. Everyone needs to hear about Justin Timberlake! And nobody needs to be a Karen!

Cass: Also everyone should know that a lot of the Black people that are killed by police are disabled. 

Lauren: Yeah, I believe it's something like 50%. 

Cass: Yeah, it's a very high percentage. 

Lauren: A part of that is also about understanding that disability is normal. When you look at the statistics on disability and chronic illness in the US, we know that there are roughly 115 million people living in the US who are living with chronic illness. And that's the people who were diagnosed. That's a huge portion of the population. So if we're not making the world accessible to those of us who have those additional needs, then what the hell are we doing it for?

Cass: It all comes down to capitalism, doesn't it. Like, if you can't work, then you're not worthy of having a life to live. If you can't earn money, if you can't pay for things, why do you exist?

If you're not able-bodied, then that means you're not able to work. And that intrinsically makes you worthless.

Lauren: How do you change the narrative for yourself? How have you learned to shift that narrative?

Cass: I actually used to, and still do, I think, battle with that a lot. Because it is a shock to your system that you went from having the world as your oyster at 22, to becoming this person who now has all of these disabilities and these ‘I can't do that.’ I'm sure that there are people out there who accomplish amazing things while having really sh*tty situations! Unfortunately, those are one-in-a-million situations. And it really came down to me … one, seeking therapy for those things. Two, really attempting to … I think, when this whole thing blew up with Black Lives Matter, earlier in quarantine … and as performative of some of these things were … it led to a lot of promotion of Black Instagrams that promote self-care and wellness, and making you feel like you are entitled to your own well being. You're entitled to take a nap today. Or, you don't always have to be someone who has to be doing something constantly. And that's the problem that we've all been having in this situation; we feel like we're not doing anything. And so we feel like we're not worth anything. Our worth is not tied to our ability to work constantly. And that is probably an unlearning that I'll have to experience for the rest of my life.

Lauren: I hope it gets easier. I hope that's something that becomes more and more second nature. I agree with you. My Instagram has gotten populated with more of those feeds, too. And I think it's a really wonderful celebration of finding Black joy, and of being able, as an ally, for those of us who are learning to be better allies, to find ways to promote that for other people. And the fact that in all of this discussion, while a lot of it comes down to capitalism, a lot of what's behind capitalism comes down to whether or not you care about other people. So what is next for you, then, do you think, in this wellness journey — as you're doing the deep dive on some of those Insta feeds, which can be really wonderful. This is one of the great things about social media, free mental health tips … 

Cass: Seeing other people like you! 

Lauren: Well, I hope I'm making some dent, but I can't do anything without talking to people like you, and being able to keep a platform like this going. 

Cass: Thank you for having me again. It's always nice and therapeutic to talk about it. I also try to tell people that: talk about it. 

Lauren: It's good for you. As long as you're ready, when you're ready. You don’t have to rush these things, but when you're ready to do it, to do it can be a really positive thing. Thank you again! 

Cass: Thank you.

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