In the last in our 2021 series on Lyme disease, we are joined by the first WOC to discuss the subject: Rhisa Marie Parera. Though she began experiencing symptoms from a young age, Rhisa grew up as an active young woman in Staten Island, NY, and got heavily involved in the salsa dancing scene and modeling from her late teens into her early twenties. At the age of 19, her health took a serious downward turn; and ten years later, aged 29, she had deteriorated to the point at which she was no longer able to participate in activities that had once brought her joy and connection to her heritage. According to the CDC standard Western blot test, she was positive for Lyme disease…but it took a decade to get there. Given her experience of the medical system, she took it upon herself from the point of diagnosis to get her life back, and has been working with a team of integrative practitioners to do just that. She is the author of the Negra Con Lyme blog — a chronicle of her life as an Afro-Latina with chronic Lyme; and will soon be launching a clothing line for Lymies. She has found strength in community, and hosts a BIPOC Lyme support group that meets weekly via Zoom, Sundays at 3pm EST.
Tune in as Rhisa shares:
- her varied symptoms: a rocking sensation similar to vertigo; migraines; a pulsing sensation in the back of her skull; loss of vision; GI issues; numbness and pain in limbs and joints; seizures; and much more
- that she also has skeeter syndrome: extreme sensitivity to mosquito bites
- that she presumes she was infected by a mosquito when visiting her family in Puerto Rico
- that she has also tested positive for Dengue fever — a viral infection also carried by mosquitoes, largely in the Caribbean
- that she didn’t get her Lyme diagnosis until 2019 — after going through at least 50 doctors on the road to diagnosis
- that she was gaslit over and over by various practitioners, frequently prescribed antidepressants, and often sent for psychiatric help as a final solution
- why she believes fibromyalgia isn’t a true diagnosis
- that when she was diagnosed with chronic Lyme, her doctor prescribed two weeks of antibiotics and sent her on her way
- that she’s learned the most about Lyme from her online community
- how her illness has affected her relationships
- how her privilege has enabled her to access treatment
- how Lyme has also put her in early menopause, and affected her fertility — with PCOS
- her specific experience of racism in the Latinx community
- why diagnoses of Lyme disease are so much more rare in communities of color
Lauren: Okay, guys, thank you so much for joining us. I am here today with Rhisa Parera. Rhisa is a Lyme disease advocate. She lives with chronic Lyme. And she's going to talk to us all about it. You may also know her from her Instagram handle, @NegraConLyme. So Rhisa, thank you so much for joining us. It's such an honor to speak with you.
Rhisa: No, thank you for having me. I'm excited!
Lauren: It's so great. And we're very fortunate to have been connected by the lovely Ali Moresco, who has also been on the show. I'm thrilled to be able to have this conversation with you. Because I'm also finding, as I'm sure we'll get into in this discussion, that representation in the Lyme disease community is really pretty piss-poor. And I imagine that's because a lot of doctors probably presume that people of color just can't possibly have Lyme disease. Because that's how medical bias works. That's how racism works. So with all that said, I would love to jump into the top of your story. I if you could give us some background on how and when you first realized you were sick. And what you have done to take control of your health since then.
Rhisa: Yeah, sure. It's always weird when people ask this question, and I've been asked this question multiple times … it's still difficult for me to pinpoint a time.
But there's a specific time where it just started rolling downhill constantly. I was 19.
I remember the exact day. I bent down to pick up something and I when I stood up, I had, severe … I had described it as vertigo, but it was more like a rocking sensation, and then a pain in the back of my head. It felt like all the nerves in the back of my skull were just swollen and pulsing.
Lauren: We're already talking neurological symptoms, which, pretty much, this was chronic by the time you realized what was going on.
Rhisa: Right. And that symptom didn't go away until this past January. And I'm 31. I had other symptoms as a child, but they didn't really interfere with my life. They were there, but it wasn't as bad as the neurological symptoms.
Lauren: Man, so you were probably bitten by a tick or infected in some way quite early on, it sounds like.
Rhisa: Yeah, I used to get really bad mosquito bites. And the mosquito bites I would get, I didn't know there was a name for them until last year … It‘s called ‘skeeter syndrome’.
Lauren: Wait, I get really bad mosquito bites, too. Is that when they get really inflamed and they're …
Rhisa: They get purple, and then sometimes they would get filled, like a blister with water. I didn't know that was called skeeter syndrome. It's an actual syndrome, and I was, like, you’ve got to be kidding me. But it was crazy. My doctor, every summer, gave me antibiotics for it.
Lauren: Wow. So this was already probably having an effect on your gut microbiome.
Rhisa: Right. He was, like, “Oh, here's your antibiotics.” Because every summer, my whole body’s just covered in mosquito bites. I have family in Puerto Rico, so we would go there. And I would be bitten from head to toe. But I was a kid and you’re, like, whatever, you just kind of scratch it. And my mom would take me on trips to different islands in the Caribbean. So I was always outside on the beach. And I went to summer camp.
So I was probably bit when I was, like, 5.
Lauren: Well, and it sounds like very likely, it could have been a mosquito bite. Because we know that mosquitoes can also carry Lyme.
Rhisa: Yeah. And when I got my Lyme results back … one of the bands actually shows if you’re positive for dengue, which is a parasite.
Lauren: All I know is that you get it from a mosquito.
Rhisa: It’s in the Caribbean.
Lauren: It’s in the Caribbean, because I have a friend this happened to in high school, and she was hospitalized for it. And they were, like, “If you get bitten one more time by a dengue mosquito, it’s Good night, Gracie.”
Rhisa: Yeah. My mom grew up in Puerto Rico, where everybody used to be, like, “Oh, my God, don't get dengue.” They were petrified to get it. When she was I was positive for that, she was, like, “Crap, you got that when we were visiting family.”
Lauren: But it's also, like, what are you supposed to do … live in fear and not visit your family?
Rhisa: Right. There's no way. There’s no way I’m not going to Puerto Rico.
Lauren: Exactly. So you had the positive band for dengue and you got the positive Lyme test. But you had the first symptoms when you were 19. So how long did it take between that first symptom showing up and your getting the Lyme diagnosis?
Rhisa: I got the Lyme diagnosis September of 2019. So it was exactly a decade.
Lauren: And how many doctors did you have to go through before you got that?
Rhisa: Oh, I’d say at least 50, at a minimum. I don't even remember. There's a lot of things I don't remember.
My friends tell me certain things, and I’m, like, “When did that happen?”
Lauren: Well, you were sick, so your memory’s probably affected.
Rhisa: They’re like, "How could you not remember? It was such a great time. We did this, and we went here.” And I’m, like, “Do you have a video, because I have no recollection.”
Lauren: Wow. So in that 10 years, waiting for your diagnosis, obviously you're getting progressively more sick, I imagine. What did that look like, the 10 years of misdiagnosis or being undiagnosed, not knowing what the hell was going on? Not having control over your body. Can you talk to us a little bit about that whole emotional experience?
Rhisa: When it first started, I waited, I guess, two weeks, because you’re, like, oh, maybe I'm just stressed out. It was my first year in college, so I was just busy. My last year in high school, I had three classes, so I did absolutely nothing. And then I went to starting college and having this full schedule again. So I thought I was just stressed out, or I had a sinus issue or something. So you go to the doctor, and they give you some medication that doesn't work. So you go to a specialist. That doesn't work. So you go to another specialist. I'd say I had about a year-and-a-half of just testing. Literally every month, I did multiple MRIs. Right now I'd say I've probably had 10 MRIs. I had weird tests, I can't even tell you what they're called — on tables where they test your blood pressure.
Lauren: Tilt table.
Rhisa: Tilt table, yeah. And I didn't have that. And then they made me go to physical therapy where they move the crystals in your head.
Lauren: That’s a very different kind of physical therapy!
Rhisa: I would go, and then afterwards, I'd feel so nauseous. And I was, like, crap, I came here by myself, and now I’ve gotta go …
Lauren: And that could have been good or bad. That's the thing too, because you don't know whether it's part of a herx …
Rhisa: Right. So I would just feel worse. And then I went to a neurologist, I probably went to every specialist.
And then I go back to my primary care doctor, and he’s, like, “So, are you depressed?”
Lauren: So it's all in your head.
Lauren: Obviously, I'm depressed. I have no control over my body!
Rhisa: And he told me, “Well, when you feel dizzy, if you're walking in the street, just kneel down.” Kneel down, every 10 steps? That’s not gonna work out! He’s, like, “Just in case …”
Lauren: He knew you lived in New York, right? Because that's the other thing. In New York, someone’s gonna knock you over!
Rhisa: They're gonna take me to a psych ward, like I’m some weirdo or something! And he’s, like, “Yo, just in case you fall back, you don't want to hit your head on this cement.” I was, like, “So we’re establishing that there's a problem here?” And he was, like, “I'm gonna give you these pills. And in a month, tell me if you feel better.” They were antidepressants, I remember it was Celexa. And I was, like, “I don't know about this. I'm scared to take anything that alters something like that.” But I took them, and it did help. So I went on a 10 year-long journey of just blaming every pain I had on depression.
Lauren: So the gaslighting was in full effect.
Rhisa: And every time I would go back, and I'd be, like, “It’s back again,” they’d be, like, “So do you just want to up your dosage? Or we can just change.” And then I’d get to the highest dosage, and I’m, like, "So what do I do now?” And they’re, like, “Well, we'll try a new medicine.” I’m, like, “Why do you make this sound so exciting when it's not?” And then they would tell me, “Okay, so check back in three months. And call if you know if you're not feeling well.” I was, like, “Well, I'm not feeling well right now.”
Lauren: Yeah, like, I don't know what feeling well feels like anymore.
Rhisa: I have no idea.
Lauren: So you were written off as depressed for 10 years?
Rhisa: On my chart, it says: major depressive disorder.
Lauren: Wow. So what made you dig deeper? What made you finally push to get this diagnosis? Was that encountering people in a community that made you think … gee, maybe this is Lyme? Was it meeting a doctor who empowered you? What was that journey like?
Rhisa: So a few years ago, I started getting really bad muscle pain. It was all over. My boyfriend at the time, he would be, like, “Oh, I'll give you a massage.” And he would rub my shoulders and it felt like he was jabbing me with a knife. And I'd be, like, “Okay, you can stop, because I don't know why it feels worse.” So I went to another doctor. I just kept going to new doctors every time, just to see if anybody could give me a different answer. And he said, “Oh, it's just fibromyalgia and there's nothing you can do for that.” He was, like, “Have you tried yoga?” And I was, like, “As a matter of fact, I have. And do you know why? Because I'm a yoga instructor. So I have tried yoga, I'm even certified to teach people how to do yoga! So I know how to stretch; I know how to do that. And I work in a gym, so I know how to work out. I've always been active. It's not that. There’s something wrong here.”
And then I remember he told me ‘fibromyalgia’ and I was, like, I don't know why I'm not sold on that.
People aren't in pain for no reason. And that's when I was, like, I can't continue to live like this, because I'm miserable. And I've spent a good portion of my 20s having a terrible time. I've just forced a smile for everything. And I can't keep doing that. So I remember they told me fibro in April of 2019. And then I was actually getting married in August of 2019. And a month before my wedding, I felt so sick. And I remember I told the doctor, “Just give me something to make me a normal human being for my wedding. And then I'll figure it out when I come back home.” I was an absolute zombie at my wedding. I was probably on so much Zoloft. I was actually taking more Zoloft than prescribed.
Lauren: Wow, and that was a doctor who set you up for that?
Rhisa: Set me up for Zoloft, yeah.
Lauren: Are they the ones who overprescribed it, too?
Rhisa: No. I was so stressed. Every time I’d go, they just told me to take more. So, I guess I’ll just take more.
Lauren: If it's a pattern, yeah.
Rhisa: I'm not gonna waste my time making an appointment and go, and then they’re telling me, “Okay, just take more.” I might as well just take more. Which is not good. At all. Not with psychiatric medication. Because I was actually on the highest dose already. So you can imagine when I came back home, it was not a good look.
Lauren: Right. And especially as a newlywed.
Rhisa: Yeah, that's another story.
Lauren: I'm curious, what happened then? I mean, you got back from your wedding, you still don't have a diagnosis. And this is only two years ago.
Rhisa: Yeah, not even. Because it was August.
Lauren: So you got back and it sounds like you, you might have had a bit of a mental health break after all those medications. What did that look like?
Rhisa: So I got back in mid-August, because we I got married in Puerto Rico.
And two weeks after my wedding, I was walking down the street and I started profusely sweating.
It was August in New York, but I felt like my body, I had no control over it. I made it to Port Authority to take the bus, because I lived in North Jersey. I was actually supposed to meet my mom for dinner. And I was, like, “Mom, I can’t. I'm not well.” I get home, I laid down. And then the next day, I woke up and my fever was 103.8 or something. I was shaking, shivering with sweating. And under my eyes was really black. I got to the hospital, and they were, like, “It seems like some pneumonia-like illness.” And I’m, like, “What does that mean? Do I have pneumonia or don't I have pneumonia?” And they were, like, “We're not sure.” So I’m, like, “Okay, why is anyone never sure about anything?”
Lauren: And at this point, it's 10 years into you dealing with people not being sure.
Rhisa: I went off on every person that was in that room! They couldn't find any of my veins. Because I've had so much blood work done, my veins have been blown out at least 10 times in the past few years. So they can never find them. Or sometimes when they inject the needle, my arm goes numb; they have to take it out. I had about six nurses come in to try to take blood, and they tried both hands and both arms. So I was bruised completely. I was, like, “Someone just needs to help me. I don't feel well. I'm tired of this!” I just went off. And I'm the most calm person. My aunt was wide-eyed. She’d never heard me like this. She was, like, she's definitely over this. And then a few weeks after that, my lungs were just shot for a good six months. And then of course, COVID started. So I was, like, oh my God, do I have that? Is that what was going on? I don't even know. It was just a whole bunch of stuff, because they couldn't pinpoint it. So about a month later, I went to Mount Sinai, which is where I usually go, but I went to a different location. And the doctor there was, like, “You've been dealing with this for how long?” The nurse asked me, “How long has this been going on?” I said, "For 10 years.” And she says, “No, when did it start?” I was, like, “10 years.” And she's like, “Huh, okay …” Everybody was really uncomfortable. So the doctor comes in, and she says, “I don't think I'm knowledgeable enough to help you.”
Lauren: At least someone admitted it.
Rhisa: I would rather have that than for them to just throw pills at me. And she told me, “I want you to see the head of medicine here.” So they squeezed me in.
Lauren: But it took 10 years for them to escalate your case, though, right?
Rhisa: Yeah. And I’d been here before. I have years of a chart at Mount Sinai. And it's digital, so there’s no excuse. And I tell the lady my symptoms. I was, like, "The back of my head. It's not a migraine. It's not a headache. It's the back of my head. It feels like it's pulsing and it always feels like I'm rocking on a ship.” And I said, “When I was in college, sometimes my eyes … everything would go black, for moments at a time.” And she said, "I think you have Lyme disease.”
Lauren: Wow, and this is the head of medicine at Mount Sinai. So anyone who thinks that Lyme disease isn't real …
Rhisa: Right? She said, “Yeah, I think you have Lyme disease.” And I was, like “That bug thing?” That was literally what I said … “like, for dogs? That commercial for Frontline?” That's all I knew about Lyme disease. You get hit by a bug, and I don't know what else happens after that.
Lauren: And then did she do the western blot test on you? What testing did they do to determine?
Rhisa: Yeah, the Western blot. The regular CDC standard one. And it all came back positive.
Lauren: So even the Western blot came back positive. Which is lucky because a lot of people require even more in-depth testing.
I always say it was a blessing that that did come back positive. Because at least I have the paper to show it.
Even the CDC says I have it! And then she’s, like, “So two weeks of doxy, and you’ll be on your way.”
Lauren: Wow. So she treated chronic Lyme with two weeks of antibiotics. Which is pretty much all you can get covered. You get three weeks covered maximum, I think, don't you?
Rhisa: Yeah, I think so.
Lauren: 21 days is what the CDC recommends. So they gave you doxycycline, antibiotics. And sounds like you were probably still the same.
Rhisa: I actually couldn't walk for three days. Because of herxing, and I didn't know what that was yet. I literally went back to the doctor holding onto the wall, outside — like holding onto buildings, because I couldn't walk straight. Literally, it was like I was leaning over.
Lauren: And now we’re also in COVID territory. So you're putting yourself at risk to do that anyway.
Rhisa: Yeah, pretty much. And she’s, like, “I don't know why you're still like this.”
Lauren: Oh, man.
Rhisa: I was, like, “Why would two weeks of antibiotics fix a symptom I’ve had for 10 years?”
Lauren: So what was the next step? What happened beyond that? How did you find resources? And what is the current treatment look like?
Rhisa: So she said, “You have to go back to the neurologist.” And at this point, I’m, like, well, she gave me an answer. So I guess she's sending me in the right direction. And I went to two different types of neurologists. It was one standard neurologist, and one was a neurological ENT. They did absolutely nothing. At that point, I was in a support group online for migraines. And the girl who was in that support group, we used to work together when I first got my headaches.
I told her, “Yeah, I tested positive for Lyme disease.” And she was, like, “Oh, shit.”
And I was, like, “What do you mean?” I'm scared now, because I didn't know anything about it. I had no idea. And every person I told was, like, “Oh, my mom had that. You'll be fine in six weeks,” and I’m, like, “Okay, cool.” So I was hearing different things. And she said, “No, no, it's bad. It's bad.” And then she’s, like, “Maybe you can find a support group for Lyme disease.” So I looked up one on Facebook, and I joined. And that's when the answers started rolling in.
Lauren: So you got more answers from patients.
Rhisa: Yeah, Facebook. They were, like, “Girl, you are herxing.” And I was, like, what the hell is that? And then they told me what it was. And I’m, like … everything makes sense. I was like piecing everything together like a puzzle.
Lauren: Well, the stuff you could remember, too.
Rhisa: Yeah, like, on the subway, I would just fall asleep everywhere. Like I had narcolepsy or something.
Lauren: And this is the thing, with Lyme disease, we know it as The Great Imitator. We know that it can mimic over 300 different symptoms of other diagnosable illnesses. So of course you had symptoms of fibromyalgia and probably narcolepsy and something connected to migraine or something neurological. As you say, the puzzle pieces fit.
Rhisa: Yeah, and then one doctor finally told me, "No, you don't have migraines, you have occipital neuralgia.” The nerves in the back of my head were swollen, inflamed, and I actually had brain swelling. So that whole thing I felt was actually my brain hitting my skull. They finally gave me medicine this January to calm that down, so that I can do the antibiotics and not have to lay in my bed for three months.
Lauren: Something like anti-inflammatory for that?
Rhisa: Yeah, it's actually what they give people with Tourette's and epilepsy.
Lauren: So is that a long-term medication that you have to stay on? This is the first time you've had relief from that symptom in a decade?
Rhisa: So I'm being treated with the Jemsek Clinic in DC. When I went to their office, they were, like, “You're too sick for us to treat you currently.” Because I was bent over. And I was, like, “I can’t eat.” My stomach was so swollen, it looked like I was ready to have a baby. People were, like, “Oh my God, are you pregnant?” And I was, like, “Well, actually, I don't even have a cycle. I'm pre-menopausal at 30.” And people would just obviously get uncomfortable, but I was tired of the pregnancy question.
When I went there, they said, “You're too sick. We have to stabilize your gut, and figure out how we can treat that pain that you have.”
And they figured out how to treat that in four weeks.
Lauren: Wow. And you had to wait 10 years for that. Are they an integrative medicine practice?
Rhisa: They use both. Dr. Jemsek, he's a doctor and he has a bunch of PAs who assist him, who’ve trained under him. They give you different cocktails of medications. I tried one; it helped for a little while, but it came back. So they tried this one. And after a few days, I was, like, oh, my God, it's gone. The sensation is gone. I was in tears on the phone. I was, like, “No, you don't understand. It's been more than 10 years.” She was, like, “Oh my God, I'm so happy.” They were the first people that took me seriously. They sit down and actually listen. They want to know your whole history, from birth until right now. They look at your whole body, everything, they want to know everything. They found out that the stomach pain was actually because my gallbladder is no longer working.
Lauren: So how do they treat that?
Rhisa: I have to get it removed next month.
Lauren: Wow. So this is so chronic that you're losing organs.
Rhisa: Yeah, she was like, “We don't really just want to start removing organs. But it doesn't work at all." I did a test. And I went to the surgeon last week, and he’s, like, “Yeah, your gallbladder is no longer doing anything. So you might as well just take it out.”
Lauren: That's kind of a big deal.
Rhisa: I was, like, "I have to do what??” And he’s, like, “So we'll blow up your stomach. And then we'll stick these rods in, and then it just comes out.”
And I’m, like, “That doesn't sound like a good time. But okay.”
Lauren: And are they planning to replace any of the enzymes that are produced in the gallbladder or the processes that are going on in the gallbladder. with something else?
Rhisa: We're not there yet. Because I didn't schedule the surgery. But once it's scheduled, then I have to let them know in DC. And then they give me, I guess, something else to do. But I'm already on a whole bunch of supplements to replace and help that at the moment. So I haven't had any stomach aches or headaches in seven weeks maybe.
Lauren: Now, here's a question. It sounds like they're sort of pinpointing the different areas of your body where you're having issues and treating in silos, but in order to look at the whole picture, right? So is the idea here that as they continue to go through these areas of your body where you’re experiencing symptoms, that they will eventually help you completely rid your body of Lyme?
Rhisa: That’s the idea. So yeah, you go in and they literally treat every symptom separately for you to at least feel like you have some quality of life. And then you do the treatment. Because they want you to be strong enough to do the treatment. Because imagine if they would have just given me antibiotics, I would have been even worse, because my gallbladder wasn't pumping anything. I would have a whole bunch of bile in my stomach.
Lauren: Yeah, that was probably re-toxifying your system.
Rhisa: Yeah, I was yellow. I have pictures. My skin … I mean, obviously I'm Black but you could tell I had a weird coat of, like, yellow skin.
Lauren: Like a jaundice.
Rhisa: Yeah. And my eyes were super droopy.
One day I woke up and half of my face was drooping a little bit.
Lauren: Like a Bell's palsy type of thing.
Rhisa: Yeah. One of my best friends has Bell's palsy. She has it super severe. So I was like, oh my God. I called her; I was, like, “Oh my God, I have Bell's palsy. What the hell, do I have everything?” I literally felt like I had every disease. Because it would just happen. It was like a rollercoaster. I would be okay, and then all of a sudden, I'd have a million things wrong. And I’m, like, I don’t get this.
Lauren: Well, that's partially the herx, but it's also Lyme disease. That's just the nature of it. So do you feel like you're on the road to recovery now?
Rhisa: I do, honestly. I feel like after seeing them, I would never go back to another doctor. Because once you're in remission, you'll see them once a year just to make sure you're doing all right. So I feel like I would be, like, I would just always call them when I’m sick.
Lauren: Well, and I'm curious as well … you mentioned that they're in DC. So you're traveling to DC to see these doctors. I imagine they're not covered by your insurance.
Lauren: So how in hell are you making all of that work between the traveling, the price of healthcare, all of these factors? How is that affecting your quality of life outside of your health?
Rhisa: The first appointment, you have to go in person. My last two appointments have been over phone or video. Once I do the surgery, and I'm on an antibiotic treatment, then they want to see me once again. But you don't have to go every time. Because the majority of their patients come from out of town.
When I went the first time, I was so desperate. I called one of my friends and I was, like, “I can't do this.”
He was, like, “I got you. I'll drive you. But I have my daughter, so she has to come, too.” He walked me through the door. And I was, like, “Okay, I'll see you later.” Even though when I left I felt so crappy, I was, like, oh, my God, finally, somebody is gonna do something.” The price, I wouldn't be able to go if I didn't have my mom. There's no way in hell. I mean, my first appointment was $900.
Lauren: Right. I mean, this is typically what we hear. People are, like, “How the hell am I gonna afford it?” Obviously, you're leaning on family for support. I was talking to someone the other day who thinks they might have Lyme disease and was, like, “How the hell will I afford this treatment?” And so many Lyme patients in particular end up in this situation, where some of them don't necessarily even have that support, do they. I know that a lot of Lyme-focused organizations, charitable organizations, can help patients raise funds for these kinds of things as well, which is important for people listening to know. But it sounds like you were really lucky to be able to go there and be able to begin to explore this.
Rhisa: Yeah. I often say I'm privileged to have my mom be able to help me, because if not, I feel like I would have died. I feel like I would have been dead already. When I got married, I was like, I feel like I don't have much time left. I'm not sure what's happening, and I don't think I have much time left.
Lauren: Wow. Let's talk about those relationships. Because I'm wondering what it's looked like for you as you've learned to step up as an advocate for yourself. It took you 10 years to to yell at the doctors at Mount Sinai. It sounds like you put up with a lot of shit before that. Because you were confused, and you didn't know, how could you have known? But I'm curious to know who stepped up for you? It sounds like you've had friends step up and family step up. What's that looked like in terms of the impact on these relationships? What did it look like in your marriage?
My mom at one point, I could see the anxiety. She was starting to call me every second, “Are you feeling okay?”
She would FaceTime me on purpose to see how my face looked, because then she could be, like, “You look like shit. I know you feel terrible right now. You've been sleeping all weekend. You're 27. Why are you sleeping all weekend?”
Lauren: And it’s supposed to be the other way around. We’re supposed to take care of them, right!
Rhisa: Right. When I got out of college, I was, like, “So I'm studying film and video. I'm going to go to Hollywood. I want to make millions of dollars. My mom's never gonna have to work another day in her life.” I was, like, now I have no job.
Lauren: You were also professional dancer, weren't you?
Rhisa: Yeah, I was in a salsa company. We used to perform. We went on road trips for performances.
Lauren: So this was your livelihood and your career that you also lost to this disease.
Rhisa: Yeah, since I had that sensation in my head. And if you watch Latin dancing, it's a lot of spinning. Sometimes they’re throwing you in the air. I need balance and coordination. And I lost that. Even now, obviously it's still off a little. I definitely wouldn't be able to perform right now.
That was a big one for me that contributed to really bad depression, because I danced since I was 9.
Lauren: And I imagine it's a cultural connection too, right, especially salsa. That's a part of your heritage. It's also what you were doing creatively, but to make a living, and all of these things were lost.
Rhisa: Yeah. Then from dancing, I got into some fashion modeling. And then I went to school for film and video, because I like that industry. I like to write. I never wanted to be a dancer. That wasn't my goal. I always wanted to be a writer. But I mean, dancing was so important to me. That's the only reason I got good grades. Because if I didn't get good grades, I couldn't go to dance school. I literally was in the studio five days a week. And then on the weekends, we would have shows. And I was the baby of the group, so everyone took care of me. They would pay for me to eat and pay for whatever; I didn't have to do a thing. Literally, I was like the diva of the group!
Lauren: But it gave you a community.
Rhisa: Yeah, I loved it. My mom was, like, “You can go out only with them, because I know them and I trust them.” Going out with 23-year-olds and I’m, like, 15.
Lauren: I mean, that's a huge turnaround, to lose the ability to participate in those activities with these people who have an important influence in your life.
Rhisa: It definitely was a change. And then when people noticed, I wasn't around, they were, like, “What's going on? Where are you?” And there were times … the roller coaster, right … there's times where you feel decent, and I’m, like, I'm gonna go out and see everyone. And they’re, like, “Where have you been?” And I’m, like, “Oh, I was sick for a while. Just some stuff going on." Then I'd have another six months where nobody saw my face. And then I’d come back. I would peek in and out.
Lauren: Does that mean that those friendships still exist? Or have they sort of disappeared, because people didn't get it and you didn't get it.
Rhisa: None of them exists, actually. I have two friends from when that started. One is the one that brought me to the doctor. And another friend that I have, we actually met at a casting call. I was standing behind her for a runway audition. And I was, like, “Hey, girl, I like your hair." And she was, like, “Oh my God, thanks.” And then we went out to eat. She's been my friend since then. And the other day, I saw her after not seeing her for a year because of COVID. And I hugged her and I was, like, “Oh my God, I'm so happy to see you.”
And she was, like, "Back then, I didn't know what to do for you. I didn't know how to help you."
We were going out one day and I had a crazy panic attack in her house. We were just going out to a club, you know, we were 21, and I literally went into full panic mode. I was, like, "I can't go anywhere. I have to go home.” It was so weird. I started crying and shaking, and she was, like, “What's happening?!” Everybody crowded around me, and I’m, like, "I don't know, I don't know what's happening.” I was never, never anxious or nervous. You ask any of my friends. You ask my dad. He’s, like, “Rhisa does anything. She's a daredevil.” You tell me, “Let's go skydiving,” I was, like, “Yeah, I'm scared. But let's do it.” I'm one of those people. And everything started to scare me. Just every little thing. I was always nervous.
Lauren: It’s a huge turnaround.
Rhisa: I felt like a completely different person. In terms of my marriage, that’s a tricky one because he ended up being abusive. Not physically, but emotionally. We're currently not together, because I felt like he was actually making me worse.
Lauren: Do you think that he might have singled you out because you were sick?
Rhisa: The beginning, no, because I didn't really talk about it like that. We connected because of talking about history of depression. So I think he singled me out in that aspect. I was very vocal about it, because I went to therapy for eight years. So he saw me as this person who was very outspoken about it. And I always talked about my experience in therapy because most people of color and Black people don't have access to it. So I always posted online: “My therapist said this … and we need to do this … and this is how we work on these certain things.” Because I said: “I share it because If you can't afford it, then I can at least give you the tips that she shares with me.” At the time, I was still under my dad's insurance, because Obama extended it. My dad is in a union, so has the most amazing insurance. That's also another reason why I never called out my doctors, too, because I thought I had the best care in the world.
Lauren: I feel that New Yorkers, we’re like that. There's also being in New York and being, like, obviously, we have the best doctors. Why would I ever question them?
Rhisa: Where would I go? What's better to hear, right?
Lauren: Yeah, where else could you possibly go. I think that there there is a mindset when it comes to medicine in a place like New York.
Rhisa: I had unlimited mental health visits, unlimited.
Lauren: That's pretty unheard of. That's pretty amazing.
Rhisa: It’s literally unheard of. I would go twice a week for years. I could go for an hour four or five times a week if I had the schedule. But yeah, with the marriage … I don't know, it went from day to night. From super concerned to, “Oh, you're in the hospital? Okay. I hope you feel better soon." I was, like, wow, this isn’t what I signed up for. I had already felt like I'd been through so much.
I kind of just walked away from it. I can't have another stressor in my life, so this isn't gonna work.
Lauren: Well, that's sort of a blessing that you were able to walk away that easily. Make that detachment.
Rhisa: Yeah, I was absolutely done. I was at a point where I couldn't walk up the stairs. And we lived in a walk-up, obviously. I just started packing. And now I'm at my mom’s house.
Lauren: So you've had people like your mom and your friends. While these groups that were once larger have dwindled, there are also a few individuals who have stepped up for you and stepped into that advocacy space for you. While few and far between, there are still a couple, it sounds like. Do you feel like you learned to advocate for yourself throughout this process, too?
Rhisa: Yeah, definitely. I feel like I was a little too lax with people. When you're a kid, people put doctors on this pedestal. They know everything, don't they? I mean, they went to school for 12 years … why wouldn't they know what's wrong with me? And I had them up there. I wanted to be a doctor when I was a kid. I wanted to be a vet. I was, like, I'm gonna go to medical school. You put MD on your license plate, and everybody's like, oh! Or you enter a space, you're just regular. But then you say, “Oh, no, I'm an MD,” and everybody's praising you. I thought I wouldn't have to fight for an answer. I thought it was just their job to fix it. Not just put a Band-Aid on it. And I feel like that's all they do. Now that I've been part of this community, I feel like all they do is put a Band-Aid on it. You're just like a customer. Literally, we're customers. I don't know, I just feel like the medical community here … I don't know if it's that they don't care, or that they're just controlled by insurance companies and other things. There's layers to it. My mom works in healthcare, so I know how it works from the top down in terms of what people do for billing. My mom does billing and coding and she runs a clinic. When I went to the consultation for my surgery … I'm still under my husband's insurance …
Lauren: Which is like, hello triggers. Okay.
Rhisa: Yeah, it is, right. But at the same time, I'm unemployed. So he has to keep me on it. At least he's paying for something. If I have to have him around, at least it's because I have health insurance. They were, like, “Your health insurance is not showing as primary.” I’m, like, 'Okay, cool, yeah, I did have another insurance. It's terminated. This is my primary; just call them, they'll tell you it’s my primary.” They were, like, “No, you’re self-pay.”
I’m like, oh, God, here we go. I have to fight this now?
Lauren: The extra hoops you have to jump through as a patient who's already chronically ill.
Rhisa: Right. I’m, like, “I'm just here for you to pull out an organ. All you’ve got to tell me is when we're doing it.” And she’s, like, “Well, you can talk to the billing team.” I’m, like, “Cool. I'll talk to the billing team.” I'm always ready to fight now. So they’re, like, “No … “ I’m, like, “There's two patients in here. You can call United and just ask them. I literally have their insurance card. It shows all my information. An hour later, I'm gonna just swipe my card and I'll get the refund. I'll just submit it to the insurance company.” I paid $150 for them to tell me, “Do you know what your gallbladder is?” I’m, like, “Actually I do know where it is. Being that it's hurt me for so long, I'm pretty sure I know where it is.” He points to the diagram, as if I don't know where organs are in my body. He was kind of a smartass. I was, like, whatever, dude. Just don't kill me on the table. And I’m, like, honestly, I'm only here because you're Black. And I feel like I won't die on the table. So I'm not going to give you an attitude. Cool. I'll be nice to you, I guess. And then I get home and I told my mom what happened with the insurance thing, she calls, and all of a sudden, they were, like, “Oh, sorry, it was a misunderstanding.” Because my mom used billing and coding terminology.
Lauren: If a system is that complex that a patient requires a professional to step in on their behalf in order to have right be done, that’s a problem, isn't it.
Rhisa: That’s a big problem. Because people who don't have that, who don't know anything about that terminology, or how anything works … they treat you like you're like a fool, literally.
Lauren: Is there anything good about the health care system the way it's currently designed for patients, like you especially?
Rhisa: I don't think so. I think it has to just be completely destroyed and rebuilt. I don't think there's anything good about it right now, at all.
Lauren: That's something we hear a lot on the show. I'm wondering as well, at this point, what is a typical day looking like for you? I mean, is there such a thing as a typical day in the life of Rhisa?
Rhisa: I mean, the last year has been different for me, because I'm not working. I had essentially lost my job due to COVID.
But once I got laid off, I was, like, well, I guess this is time to figure out how I get better.
Because I've been working now since I was a teenager. So I was, like, okay, this is my time to figure it out. Since I've been feeling better, I've actually been able to exercise again. Because in all those years, I gained about 50 pounds. Even when I was working out, I was still gaining because I had all that crap in my stomach. And then I was diagnosed with PCOS also, because I have cysts on my ovaries and I don't get a cycle. I had gone to a holistic doctor, and she was, like, “I feel like those things are kind of tied together.” Because doctors were like, “No, it's separate.” and she’s, like, “In terms of timing, and how things went for you, it has to be tied together.” Because as I've been feeling better, my cycle has kind of come back. That’s still confusing for me.
Lauren: But it's also a bunch of additional diagnoses that have likely been triggered by Lyme. Also affecting your fertility at an age when probably a lot of your friends are getting married and having babies.
Rhisa: Yeah. When they told me they were, like, “So it's consistent, you have polycystic ovaries.” And I was, like, “Okay, what?” And he’s, like, “When you're ready to have a baby, just let us know, and we'll give you some fertility medication.” I was, like, “Wait, so you're telling me I can't have children? Hold on …”
Lauren: That’s a lot of news to handle.
Rhisa: Not that I want them right now. But I wasn't aware that that would be a problem.
Lauren: As someone who has personally done their own research — because I've looked into the whole fertility thing — the way that doctors say, “It's fine, we'll give you fertility drugs” … it's not that simple, is it. It's not as simple as ‘we give you fertility drugs, you have live baby.’ And I think those who've been through that experience, been through dealing with fertility, IVF, are familiar that experiences this emotional and also this central to our beings are sort of written off as, “Don't worry, when the time comes, we'll give you drugs.” Like it's an easy thing, when that's not at all the case — particularly if you're someone who has a condition like PCOS.
Rhisa: Oh, no. I have days where I'm really tired. And I can't do anything else. But then I have days where I can lift weights.
So I kind of just go with the flow at this point.
Lauren: You're celebrating the good days. You're taking control of them.
Rhisa: Yeah, when I have a good day, I make sure I use it. Because I really do like working out. I used to use it when my mood was low, and I would just be, like, okay, that gets these endorphins flowing. I need to feel better. So when I have good days, I do work out or even if it's just stretching. Just something to get my body moving. I guess it reminds me of dancing, too … Sometimes I post videos of me dancing on my Instagram!
Lauren: That’s great. Celebrating the good days is important. But also knowing that some days are going to be days that you spend in bed.
Rhisa: And then sometimes you have the people that are, like, “Well, I mean, you're great now!” Because I had posted a video of 60 seconds of me dancing. And I’m, like, I actually took a three-hour nap after that video, because I literally was about to fall over. But thank you, thank you for letting me know that you don't believe anything I say.
Lauren: Well, speaking of which … everything we're talking about is so entirely invisible, right? You're dealing with multiple diagnoses associated with the Lyme, multiple treatments. You said early on in the interview that you must have gone through at least 50 doctors before you even got your diagnosis. You were chronically ill for 10-plus years. What about those situations where you have been confronted, either by friends or family, or by these practitioners, and forced to justify the existence of your diagnosis to people who just didn't get it because they couldn't see it. How has that played out for you? What have those situations manifested into?
Rhisa: It’s tough, because I've always hidden everything very well. So many people, now that they've seen what happened and I shared pictures or videos of things, how I looked … I get a strange reaction.
People don't really know what to do. They're always confused. Like, “Oh, I hope you feel better soon.” And I’m like, ‘You've been telling me that for 11 years. You don't need to say that anymore.”
I literally tell people, “You don't need to tell me to feel better soon. It's okay. Because I may never feel better soon.”
Lauren: And if that’s all you have to contribute to this conversation then …
Rhisa: I don't need that. It's really aggravating. My blood pressure rises. I’m, like, “What is it that you don't understand? I will literally explain it to you, because I get it that it's confusing.” Because, before knowing all this, I probably was the same way. A lot of people told me, “Oh, my God, at your wedding, you looked so happy and you looked fine.” And I was, like, the fact that you saw I looked happy shows we're not that close. Because my best friend who was standing there, my maid of honor, she kept making eye contact with me … like, are you good? She knew I was not okay. My mom knew I was not okay also. My dad literally told me that he was in denial; he just couldn't accept it. And I literally told them, “Guys, I got married. Obviously, I wanted to get married, but because I thought my time was almost up. And I was, like, well, I don’t want to die, but at least I'll have a wedding. Every girl wants to have a wedding." And they just looked at me like, “Oh, I didn't realize it was that severe.” And when I talk like that, people get very uncomfortable. I’m, like, “Listen, that was the reality of it.” I don't want to compare, but if you see someone with cancer, you get so much attention. People start GoFundMes for you. People are always there, they're very attentive. Right? But for this, I could count on one hand the people who've really been an anchor for me. And I have a hard time sometimes with the people who peek in and out. Because I’m, like, you're my family. But I need you. You don't have that closeness that other people have for me, or with me. Especially with the Latino community. It's very religious. So they’re, like, “It's in God's hands.” And I’m, like, "You know what? No, actually, it's not.” I don't want to get into a religious conversation. But if that was the case, then I think I would have been better by now. I hope. I don't know. They keep telling me, “It’s in his hands." And then I get really aggressive about it. And they’re, like, “No, no, you'll be fine. You'll be fine.” And I’m, like, “I think you're just saying that to make yourself feel more comfortable.”
Lauren: Well, it's also the thoughts and prayers thing, right? That's really nice that your thoughts are in the right place. But also, that's not going to do shit for me. I need medical treatment, that's going to cost thousands of dollars. And I've been sick for 10 years. So I need more than thoughts and prayers at this point. I need your money and your time and your energy. And if you don't have those things to give, then I don't need you.
Rhisa: Right. I'd rather just be here with my two friends.
Lauren: Yeah. Well, the two friends who are good to you are better than 20 who don't know how to handle it.
Rhisa: Who are useless, yeah.
Lauren: Absolutely. You've touched on these experiences as a woman of color in the healthcare system and among friends and family. And I'm wondering about experiences of both privilege and prejudice, both of which you've mentioned. Particularly in regard to the way in which you present. You’re a woman of color walking into these appointments with doctors; you chose a black surgeon for your gallbladder surgery for that very reason. How do you think your identity has affected your treatment? Do you think that being a woman of color in the system is part of why it took you 10 years to get diagnosed? And do you see your circumstances maybe being different if you presented differently — if you were a white woman walking into the system, if you were a man walking into the system. What do you think about all that?
Rhisa: I had posted a status one day about racism in the medical community. And I had a friend who asked, “Have you seen a Spanish doctor?” Now in New York, Spanish just groups everybody who speaks the language.
Lauren: What they mean is, have you seen a Spanish-speaking doctor? And that's inappropriate.
Rhisa: I said, “Sweetie, that's white. Ethnicity and race are two different things. So for me,” I said, “I'm Black first. Woman of color, I don't even identify as that.”
Lauren: My apologies for using the term.
Rhisa: No, no, I don't mean to make you feel awkward or anything.
Lauren: Not at all. If you prefer to be called a Black woman, then that’s who you are.
Rhisa: The issue is. People of color, who are not Black, are also racist towards Black people. So I can see an Asian doctor, doesn't mean he likes anybody who's black. Or an Indian doctor, I can even see a white Puerto Rican doctor; he could probably not give a shit about my whole life. Racism in Puerto Rico? That's a whole ‘nother story.
Racism in the Latino community? The worst.
It's actually worse in the Latino community than it is in the United States I'm okay with the dude with a Confederate flag, because at least he's out and it's obvious. In the Latino community, it’s very subtle. They’re, like, “We don't see race, Blackie.” And you’re, like, wait a minute … hold on, pause, rewind. So it's tough. I can see somebody who's a different ethnicity. Or I can see someone who's Black, and who's very classist. They’re, like, “Oh, you live where? In what neighborhood? Oh, I'm not from there.” They get very personal. I had a Black doctor who told me, “You should become a doctor, since you know so much about your illness.”
Lauren: If they hadn't been sarcastic when they said that, they might have been making a good point.
Rhisa: Right? He said, “Oh, you can make a lot of bank” … like a lot of money. And I was, like, I don't know why you use slang with me like we're friends. I don't like that. And being that my mom paid a $900 deductible, I need some better care. I said, “You know, maybe I will become a doctor. But I need you to help me get better so I can become a doctor. And you know what, if I became a doctor, I'd be poor. Because I'd actually be helping patients.” I never saw him again. He never even checked on me to see if I if I felt better with what he gave me. I never heard back from them.
Lauren: Which is very irresponsible.
Rhisa: That's a tough thing with Lyme, because talking to so many people — Black, white, Asian, Indian, Latino — wherever they come from, it's been the same thing. But obviously, being Black, there's an added layer, because I've barely found anybody who's Black in this community. I feel like I'm the token Black girl! I’ve found one other Black girl. It was on Instagram, too. When I found her, I was, like, “I need you!”
Lauren: As a patient advocate myself, when I have been following people and connecting to people — usually through Instagram, that's how I meet most of the people who are on the show — to me, the Lyme community is … is it all white people? That's nothing against the people who are living with Lyme. This is a serious disease, no matter what the color of your skin is. But it seems to me that, for whatever reason, the medical community has responded to Lyme disease in the sense that they’re, like, only white people go to the country and get bitten by ticks.
Rhisa: Oh, my God, I love that you said that. I was on another podcast. When he told me, “Oh, we're gonna release it tomorrow,” I told him, “Be prepared for the comments you're gonna get. People are gonna go crazy.” Because they asked a lot of questions about race and racism in the medical community. And people don't like talking about that.
Lauren: Well, welcome to my show, where that's all we do!
People get very angry, especially in the Lyme community, because so many people have waited so long for a diagnosis.
And then treatment is sometimes unattainable for most people. And the comments, they were rough. I was already prepared for them. But I told them to be prepared, because I don't think they realized what was going to happen. And the comments were, like, "I don't think she has Lyme disease, because there's no ticks in the projects.” Or, “Black people live in urban neighborhoods. There's no way she could have been bitten.”
Lauren: You all realize how racist that is, right, guys? Like, think about what you're saying before you say it.
Rhisa: I've actually never lived in public housing. And there's nothing against living in public housing …
Lauren: You mentioned that you lived in North Jersey. You’re living near the woods!
Rhisa: I grew up in Staten Island. I was, like, what?
Lauren: Don’t worry, I’ve been in nature.
Rhisa: I'm Caribbean also. It was great because there were people who were fighting for me and saying, “You don't know her like that.” I have people who just go off and fight for me instead of just sitting back.
Lauren: That’s good, though. I'm glad that there are people who are stepping up into that space. Your Western blot is very positive. We know you have Lyme disease. We also know that you might not have gotten it from a tick, you could have gotten it from a mosquito. Anyone, anywhere could get it from that. You could get it In any urban setting, you could get it in any rural setting. It's everywhere. It's an epidemic. And people don’t understand that about Lyme.
Rhisa: I feel like most Black people are probably diagnosed with lupus instead. Because that's such a common disease among Black women. Every time I hear another Black woman tell me, “Oh, yeah, I was diagnosed with lupus,” I’m, like …
Lauren: Just get a Lyme test before you make a final decision.
Rhisa: Yeah, I’m, like, so I don't want to act like I’m a doctor, but I kind of feel like one.
Lauren: It's interesting, because I'm training as a health coach, and everyone I talk to, I’m, like, “Get a Lyme test.” Everyone. Because you don't know if that's maybe the underlying thing. If we're gonna take a root cause approach and heal from the inside out.
Rhisa: I think a Lyme test should be part of a physical.
Lauren: Yeah, absolutely.
Rhisa: In a regular physical, even when they take labs, they're the most basic labs. When I got lab work done at Jemsek, it was like a thick book; they were trying to get every last drop of blood out of your body. There was so much testing. My levels were so depleted.
And I was, like, “Funny how my doctor said, ‘You're good to go. Everything’s great.’”
Lauren: And sometimes it's as simple as, “Oh, look, you’re vitamin D deficient. Maybe if we supplement with some vitamin D, it'll hugely improve your fatigue.”
Rhisa: That definitely did. That definitely helped.
Lauren: So the fact that they're being responsible and doing more comprehensive labs is excellent. It sounds like you're in good hands with them. You mentioned that these people in the comments, and after that other podcast you were on … I wonder if you were a white woman, you would be dealing with that shit?
Rhisa: Oh, no way. And I also liked the fact that the people who were answering those comments were white. Because coming from me, it is gonna be, like, I'm just the aggressive, angry Black woman. And I also said on the podcast, “That’s why I never got angry at the doctor. Because just gonna say I'm some mad Black woman who's always mad — because we're always mad, right?”
Lauren: I would be. It’s a trope that we hear about over and over again, the hysterical woman and the angry Black woman, and they're very closely interlinked. You're damned if you do and you're damned if you don't. I mean, that's a scary place to be when you've been sick for 10 years. And trying not to lose your shit as well.
Rhisa: Right. And also, at the beginning of my marriage, when we were in the hospital, I would tell him, “Don't get hysterical. One, you're Black. You're six feet tall, a former football player, you're gonna get arrested. Just don't get aggressive. Just let me talk please. Just stand there.”
Lauren: I mean, that as an additional layer of consideration, when you're just trying to feel like a normal human being … it’s got to be so frustrating. I'm so sorry that you've had to go through those additional thought processes and deal with people who would only respond to your thoughtfulness. It's not down to you to be thoughtful right now; it's down to the people who are supposed to be taking care of you. But you're absolutely right. This is what systemic oppression looks like. This is what racism looks like. This is what misogyny looks like.
And I always told people that I understood what white privilege was, pretty early, because my father is white.
And I saw the dynamic of how people treated him, versus my mother. So if I had something, an issue at school, we would bring my dad, because the minute people see him, they're like, “Oh, I'm sorry. We'll get it handled right away.” And then if I bought my mom, they'd be, like, “Well, you know, Mrs. Parera, we're aware.” And they’d get all aggressive about it. And I’m, like, yeah, we're only bringin’ dad to school. That's when I started seeing, like, okay … But it's crazy, because it took me so long to piece that together with doctors, because I thought, with the insurance, we're good to go. I didn't see them as seeing me as something indifferent. I just saw them saying, “Oh, she has really good insurance. Book her in now, because they're gonna pay for everything.”
Lauren: Yeah, that's interesting, because that's like an experience of privilege. And living between these two identities almost, for you.
Rhisa: And it's crazy. Because my dad, I don't know if it’s that he doesn't get it. Or he just doesn't want to get it. But he doesn't. I’m, like, it doesn't matter to you like that. You don't have to worry about that. That's not something that you think about. One time I got pulled over with my boyfriend, and they searched our car illegally, and they asked us if we were legal in this country, and if we had ever murdered anybody, and they asked us to step out of the vehicle. And we didn't even do anything; it was just them being annoying. And then he’s, like, “Well, you know, those are just stupid cops.” And I was, like, ‘We could have been killed like.” So yeah, it's a tough conversation. It's even tougher when it’s a parent. People ask my mother, “Why do you have a Black daughter?” All the time. They’re, like, “Are you adopted?” Even if I was adopted, they’re still my parent.
Lauren: And the fact that these experiences then intersect with your own very personal experiences in the healthcare system, too. You're having these experiences within and outside of a system that for a decade didn't serve you. And that actually, you've had to work outside of, because you've had to go and work with doctors who are not taking insurance, because they're the only ones will take you seriously, because they've divested from the system. That shows us what's wrong with the system. It also shows us what's wrong with the larger picture here. But then also in our personal relationships. It is multi-systemic and very layered, especially for you having connections to these different worlds, in various iterations. That’s got to be endlessly frustrating. And sad.
Rhisa: Yeah. Because it feels like you're always having to prove something. Like, oh, I gotta prove I’m this, I gotta prove I’m that. I have to prove I'm this ethnicity. People do that a lot, too. "Puerto Rican? You're too black to be Puerto Rican.” Do I have to explain history and slavery and how that worked out here. It's just all over. It's just everywhere, all the time. At every moment. There's never a break. That's what it is, too. Then you’ve got to prove that you're sick?
Lauren: Would you say that these issues of inequality, at least in the health care system, from a gender and race perspective, in particular, are their own public health crisis?
Rhisa: Oh, for sure. Even now with COVID, it’s, like … the African-American community is affected more. And I’m, like, Well, I mean, obviously. Let’s get into why that's actually happening.
Black people don't just have more diseases!
We could get into who brought diseases where, historically.
Lauren: We can also get into who's being treated when. And who’s being used in research studies.
Rhisa: Do these people have access to better jobs and health care and housing. We’ve got to start at the top; you can't just say, Black people have more diseases, Black people have more like hypertension. What??
Lauren: I think of, in a way, everything ties into capitalism for us. There’s this idea of trickle down economics. And what we need to do is turn the whole thing right down and trickle right up instead, right? If we did trickle up and looked at the economic situations, and how capitalism has played into that, and then how it expands into all these other … because unfortunately, we live in a system wherein that denotes one's value. And when we've created systems that keep certain people in oppressed conditions, what do you expect? I commend you for finding a way to gracefully walk the walk. And share about what you're going through. I'm curious, as well, what made you want to share? Was it because you didn't see anyone else like you in the community?
Rhisa: Yeah, I was, like, why am I the one person? I did a podcast and so many people were asking me to talk, and I was, like … am I the first Black person diagnosed with Lyme disease?
Lauren: Yeah, for a lot of people you are!
Rhisa: I was being asked to talk and my email was flooded. And then I started a blog, and I got all these followers, and it was, like, you care what I have to say?
Lauren: That’s gonna be validating though, right?
Rhisa: Yeah. I was, like, oh, my God, do you really care about what the hell I'm talking about? That's crazy.
Lauren: That’s because you're not alone. I think part of it is also that you were isolated for so long in your circumstances. And when you start sharing publicly, people start going, Hey, hang on. I think I’m with you.
Rhisa: Yeah. And then I found some indigenous people and Asian people, and I’m, like, okay, so they're out there somewhere. There's a group. And then I got a lot of people asking me, “What did you do?” Or, “How do you live? What do you do with your life?” They’d ask me anything, random emails about anything. Or, “I think my sister has this, now what?” And I’m, like, “Girl, I wish I had the answer to that question. That’s super specific. I'm still figuring this out.”
Lauren: That's the tough thing, isn't it … you start speaking out, and you want to be able to do it to help people. But you also want to be able to remind people that everyone's individual, not everyone's going to be able to take the same approach to different things. That is a really tough one. And that's what doctors should be answering, those questions. But when it comes to Lyme disease, there are few and far between, these LLMDs, these Lyme-literate doctors, who can actually look at someone from a multi-systemic perspective, do the right labs, and fully support. And that, again, is often people who've divested, mostly mindfully, from the insurance system. Because it all comes back to the money flow, doesn't it.
Rhisa: Yeah, exactly.
Lauren: First of all, I want to thank you for sharing everything that you've shared. I mean, this is such an incredibly personal conversation to have, and one that's potentially very triggering. I'm really, truly, truly honored that you are holding space for this conversation — not just for your followers, but also for the people who are listening to this show, This is extremely meaningful to me. And I know for people who are tuning in. I wondered, as we fly into the tail end of this chat, if you have any tips that you could offer. Speaking of people writing you with a million questions. If you could distill your Top Three Tips for people who are living through their own chronic health concerns, Lyme disease or otherwise. But particularly invisible stuff. What would your Top Three pieces of advice be to your fellow Spoonies out there?
I would say … one, find a support group. Because most people get more answers there than they ever do seeing numerous doctors.
I feel like the support groups have really changed my life, when I found a community. Even when you have a bad day, at least you'll find people that understand. Even when you have an advocate, or family or friends who are there for you, it’s different. Because they can only understand so much. So you want to find a community that knows exactly what you're talking about. Two … I would say, I always say this … fibromyalgia is not a diagnosis. It's a symptom. I will say that till the day I die. That is not a disease. You're not just in pain. How does that make sense? So you are just gonna hurt every day, the rest of your life you’re going to be in pain? No.
Lauren: In some ways you could say this about depression, right? If a doctor is writing you off as depressed.
Rhisa: You’re just sad. Okay, great. No, no, no. Fibromyalgia is not a diagnosis. It's not, there's no way. Because now, I don't even have fibromyalgia.
Lauren: Well, that's a positive that you're not in pain anymore. That's a huge sea change for you.
Rhisa: The third one, I guess, would be … don’t settle. Because I settled for so long, was complacent, sure they were right. You know yourself. Nobody knows you more than you do.
Lauren: Keep searching. Keeps digging. And it sounds like, get second opinions, get third options, get fourth opinions if you have to.
Get 100 opinions if you have to. You're gonna find somebody who knows what they're talking about.
Lauren: And you did. Sometimes, it does take 10 years, but hopefully the more we talk about it, the faster people will find directions.
Rhisa: Right. And then maybe you can have a good next 30 years, finally. Right?
Lauren: Yeah, absolutely. We've talked a lot of downers today, right? There have been a few bright spots in this conversation, but it's been a lot of … Lyme is a very serious disease and this shit is fucked up! But I'm wondering if you could share Three Things that give you unbridled joy. You’ve obviously had to make changes in your life to accommodate your diagnosis and treatment. But what are Three Things that you're absolutely not willing to compromise on in your life? These could be comfort activities when you're flaring hard, or indulgences. Just anything that you turn to when you want to light yourself up. Where does Rhisa go?
Rhisa: Salsa and music, my cat.
Lauren: She has not made an appearance!
Rhisa: She's actually on my bed right now. I'm surprised she hasn't made noise. Maybe it's because of all the essential oils she’s had!
Lauren: Maybe it’s because she’s, like, I know mommy's doing something serious.
Rhisa: She's been with me through a lot. When I'm flaring, she knows. When I would go through high fevers, she would sleep with her back on my back, the whole night.
Lauren: That’s beautiful. They really have a sixth sense about this stuff, don’t they.
Rhisa: Yeah, for sure. The third thing? This is really bad. I don't want any other Lymies to follow this! Bread.
Lauren: I know. I know. I really have a thing for bread. There’s nothing in this world like the smell of fresh baked bread.
Rhisa: With butter, when it’s hot.
Lauren: When it melts on the bread! I know. The thing is, we know it can be an inflammatory food for a lot of people. I'm with you on this one, though. I spend most of my time not eating gluten, but sometimes you just need to eat the fucking bread. And the butter.
Rhisa: It doesn't bother me currently. But in the beginning, it was rough. Gosh. I can give up candy. I can give up cake. But bread, pastries? Oh, my God.
Lauren: When you get out here, I'm going to take you to Tartine and you're never going to forgive me!
Rhisa: It’s funny, right near the LLMD is a huge bakery. Of course.
Lauren: Of course. It's these dichotomies that are always placed side by side in our world, aren't they. Identities of black and white, and identities of sick and well. It is the great leveler, I guess, or something! So what is your ask for listeners today? What can they do to support you and the Lyme community, particularly the Lyme community that consists of people of color who are not as well represented from a medical and social perspective? What can people do to support your work?
Rhisa: Well, me personally, they can subscribe to my blog. Honestly, I had this plan when I started the blog, to have one blog post a month. That didn't work out. Of course, because of the up and down. So my plan is to actually start a small clothing line. This weekend, I'm shooting my first short film.
Lauren: Oh my gosh, this is amazing!
Rhisa: And it's about everything we just talked about.
Lauren: So, documentary style?
Rhisa: It's more like a narrative. Drama. It's only 30 minutes. Because it takes a lot of money. It'll be finished filming by the end of this month; we should be done by May.
Lauren: Can’t wait to see it. We’re gonna have to have you back on the show when this is released.
Rhisa: It’s titled Your Labs Are Normal. Because I've been hearing that shit for a long time. If people can support that, that'd be great. But I'll share more of that on my Instagram, which is @NegraConLyme.
Lauren: And what about your blog address as well. Give us your URL.
Rhisa: It’s the same thing. It’s negraconlyme.com.
Lauren: Perfect. I’ll link to this on the webpage for the episode, too.
Rhisa: Yeah. I just wanted to start with small things like T-shirts, hoodies, hats. Anything that helps with symptoms that we have.
Lauren: And what's next in your health journey?
Rhisa: I guess getting this organ out!
Lauren: That’s a start. Bye, gallbladder!
Rhisa: And then after that, I'll start a new antibiotic protocol. But it's pulsing antibiotics, so it's not every day. The idea is you have one day antibiotics, then you kind of detox the next day. Antibiotic detox again, it's kind of trying to just get everything out. I hope that works, so I don't have to deal with other pills.
Because literally, I take 20 pills a day.
And sometimes you just start gagging. I wake up in the morning, and my throat is, like, oh, God, here we go again.
Lauren: Rhisa, is there anything else you'd like to share before I set you free?
Rhisa: Fortunately, I'm Puerto Rican, so I can keep talking. I guess not! I guess, Part Two …
Lauren: Around your film release.
Rhisa: Yeah. Oh, my God, I'm so excited for that.
Lauren: So am I. This sounds wonderful. It’s also the culmination of all of your passions.
Rhisa: Yeah. Not for nothing, these past few months have been life-changing. What the hell? And I hate saying that. Because the world is literally burning right now. And I’m, like, wow, a lot of good things are happening to me.
Lauren: I say, embrace it. You lived for 10 years with no good things happening. You are allowed to have some joy in the middle of a global pandemic. I would actually say that to everyone who's listening. We’re allowed to also find joy when things are dark. Rhisa, it has been such an absolute pleasure having you on the show. And I'm so glad that we connected. I can't wait to have you back. You have an open invitation to come back anytime. And I hope, when the world is safe to travel, and once more we'll be able to actually connect in person. But I am really, truly just bowled over by your generosity in sharing your story. And I'm so grateful that you took the time today to share and to give us your energy. So thank you so, so much. Get yourself tested for Lyme, guys.
Rhisa: Yeah, seriously.
Lauren: If there's nothing else you learned today!
Rhisa: I don't remember what the websites were, but there are some places … because I know a lot of doctors are, like, “We're not testing you for that,” and they’ll push back. There's some places … i did IGeneX; I spent $1,000 on testing . But there are some other places — now that Lyme is becoming more of a conversation — where you can get tested for it, and it's way cheaper.
Lauren: Now, that’s interesting. If you can remember any of the links, please send.
Rhisa: I’ll have to look back. It was way cheaper. IGeneX is really expensive.
Lauren: So many people can't even afford the in-depth testing. But if there's more affordable options, then please do share with us. And for those who are tuning into this episode, I will post any additional links that Rhisa shares, or that I'm able to find, on the web page for this episode. I know there are also a few connected to Episode 118, which we did with Dr. Kelley, who's an LLMD in Chicago. She mentioned a few different labs that do Lyme testing, but I think it depends specifically what you're looking for, in terms of co-infections.
Rhisa: Yeah, that's a tough one.
Lauren: It gets more and more complicated. But we will absolutely continue to post these resources. And I'm so grateful that you brought it up, and that you are speaking out, and living your life out loud and finding moments for joy in the middle of 10 years of illness and misdiagnosis and being misunderstood and finding your way to light at the end of the tunnel. Very, very happy to hear that you're on the mend in that sense. We're not there yet, but we'll keep working toward it. Rhisa Parera, thank you so much, and we look forward to welcoming you back.
Rhisa: Thank you.