Episode 47: Devri Velazquez

Episode 47: Devri Velazquez

Devri Velazquez – or, as she has aptly proclaimed herself, “pretty, sick. chick” – is a content creator, writer, editor, speaker, model, and advocate for chronic illness. She lives with a very rare form of vasculitis called Takayasu’s Arteritis. Diagnosed in 2011, she was told by doctors that she might not live to see 30 – and she turned 30 last month! Not only has she defied the odds with her physical health, but her mental health has played a big role in her ongoing wellness and healing. Since diagnosis, she has worked tirelessly to advocate for awareness of this rare disease, connecting with individuals all over the world living with similar conditions. She sat down with Lauren to talk about what motivates her, how she approaches her mindset, and why hard boundaries in her relationships have kept her in good stead. We also touch on gender, ethnicity, and sexual identity as they apply to her medical experience.

Key links mentioned in this episode:

Devri Velazquez

Devri on Insta

Tune in as Devri shares…

  • that she was diagnosed during in her last semester of her undergrad degree
  • that her early symptoms included brief vision loss, rapid weight loss, jaundice, limp joints, hair loss, and heart palpitations
  • that it was confusing to connect the dots of her symptoms – and that at the time she felt like an outsider looking in on her body, disconnected from it entirely
  • the revelation that caused her to look into her health more deeply: her mom, a nurse, urged her to go to the hospital
  • that it was lucky her parents knew people at the local hospital – because those connections got her a diagnosis within days of checking things out
  • that she saw how hard people rallied around her to find an answer
  • that she was so sick at diagnosis, she worried she’d die in her sleep
  • that she was on bed rest for a full year after diagnosis – which is the antithesis of her personality
  • that her partner helped take care of her that first year after diagnosis, which really humbled her
  • the importance of asking for help – it’s OK, and it’s necessary
  • that as intense as her physical symptoms were, the mental battles that she faced were harder
  • some background about Takayasu’s Arteritis
  • that the biggest registry for Takayasu’s is in Japan, and consists of about 1,300 patients
  • that 1 in 2-3 million people may be at risk for Takayasu’s – so, in essence, she is the only person in Brooklyn living with it
  • that she had to get her mind around the idea of death, and come to terms with it
  • that she has created discipline around her diet, rest, and relationships
  • that when she was diagnosed in her early 20s, medical professionals told her family that the low life expectancy with Takayasu’s meant she had a 40% chance to live 10 more years – and she just turned 30
  • that she lives in a constant 8 or 9 on the pain scale, but has learned to accept that level as her 2 or 3
  • that she’s learned grace from her experience with chronic pain
  • that her pain is focused mainly in her joints, and she occasionally uses a cane as a mobility aid
  • that as a freelancer, she is unable to consistently maintain health insurance
  • that she takes great inspiration from the world around her
  • that she feels more pain when she stands still – which is both a reality and a metaphor for her life
  • the role of mindset in her health
  • that she would like everyone to have access to healthcare
  • that artists and creatives aren’t taken as seriously as others in the healthcare space, and they need to be
  • the need for greater compassion in politics and in healthcare
  • the burden of her healthcare costs, which make her feel like her chronic illness is a punishment
  • her experiences of judgment, harassment, and abuse in the healthcare system as a queer WOC with chronic illness
  • how the #MeToo movement has taught her to raise her voice in uncomfortable medical situations
  • that she shares her story to remind others they are not alone
  • that she experienced her first bout of depression at 13, and has had support from her family since the beginning
  • that she utilizes therapy for her mental health, and that she started her own meditation practice at the age of 12

 

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Devri Velazquez sits wide her hands framing her face. She wears an orange peasant top on a background of smooth cement walls and a teal velvet banquette. Her hair is braided and pulled away from her face, and she wears eyeshadow that complements the color of her top.

Lauren: All right guys, thank you so much for joining us today. I am here with Devri Velazquez, who is a content creator and chronic illness survivor. She lives with Takayasu’s disease, which is a rare disease that she’s going to get into and tell us all about. So Devri, thank you so much for joining us! 

Devri: Thank you for having me. 

Lauren: Oh, total pleasure. So why don’t we start from the very beginning … when and how did you first realize that you were sick?

Devri: So, everything happened in 2011. It was over the course of literally a few weeks, or maybe a month. My brain fog is so bad, so I don’t know what exactly started first. All I know is that literally everything was happening day after day. It was so close, all of my symptoms. 

It’s like I woke up and an alien or something was kind of inhabiting my body, because I felt the changes so rapidly. 

I lost my vision for a few minutes. One time, at the store, I was literally reaching for something on the shelf. And then everything turned to black, mid-reach, so I couldn’t find the thing I was trying to reach for on the shelf. And another thing that happened in that same time frame was that I had really rapid weight loss. I lost maybe 20 pounds, and I didn’t even realize it because I wasn’t around family or anything … I was in my last year, or my last semester of undergrad, and I was away from people who had known me. So I didn’t have anyone around me to tell me that I looked sick or I looked different. My skin was becoming pale, my eyes were becoming kind of jaundiced; my hair was falling out. I just chalked everything up to stress, because I was working also. And speaking of work … I remember I was sitting at the desk and my wrist kind of fell limp while I was typing. And I just assumed, ‘Oh, I have carpal tunnel’ — because I type so much and I’m on the computer a lot. And so I had all these things but I didn’t connect them because they just seemed like one-off kinds of things that were happening. At the same time, I was 20 years old, so I wasn’t as connected to my body the way that I am now. And so I was kind of witnessing these things as an outsider happening to my body, but I just wasn’t connecting anything. Another thing was, my heart rate was extremely high. I had really bad heart palpitations where the normal heart rate for someone my size and my age at the time was maybe 80 to 90 beats. And my normal heart rate was maybe 160 to 180. 

Lauren: Whoa. And that was a resting heart rate, too.

Devri: That was a resting heart rate. I would be laying down and it felt like I was running a marathon. And so the my big revelation that caused me to really look into what was going on was, I had a family reunion. I met up with my family and with my parents. My mom’s a nurse, and she saw me … and she’s normally super chill … she doesn’t worry … she’s not one of those people who over-worries about anything. 

She always has been the person who’s calmed me down when I worried about something. When she saw me, she looked at me as if she saw a ghost. 

She doesn’t cry; she’s just not one of those people. She looked at me, and she was devastated.  I remember noticing her expression, and becoming scared and worried. She took my pulse in the bathroom during the reunion. There was a big party going on, but we were in the bathroom and she took my pulse and she said, ”We need to get you into a hospital.” We were so excited to see our family. My great grandma was there; we were celebrating her 95th birthday or something. We were really excited about being around family, but she was, like, “None of this matters. Let’s get you to a hospital.” And she and my dad took me to a hospital … and it was actually also their 20th anniversary or something …

Lauren: Oh, man, it was a lot at once. 

Devri: There was a lot happening, and I got tests done, and luckily, because of my parents’ friendships with people in the medical industry, or the healthcare industry, I got a diagnosis maybe a week later. 

Lauren: Oh, that’s so lucky. That’s unusual. Usually with all those symptoms, we hear that people wait years for a diagnosis. How did that happen? Was it that they were actually looking for the zebra? Were they looking for an unusual cause? 

Devri: Yeah, and that’s something I still am so grateful for to this day. And I still feel that impact. It helps me want to survive and want to continue thriving, because in that moment, I understood … even if I didn’t fully understand it … I saw how hard people were rallying for me, people who I didn’t know personally, who were friends of my parents … everyone wanted to find an answer. So it became important for me to want to keep this thing going. I didn’t know what it was. I didn’t know what was going on, but I was ready. I was in the driver’s seat. I was nervous. I was so scared, I’m so scared. 

Physically, I felt like I was going to die, and I felt like that that whole first year of my diagnosis. 

Every single day, I woke up nervous to open my eyes because I thought I was going to die in my sleep; it was really bad. And I was on bed rest for that whole year. Which, if anyone knows me, before then or after then …

Lauren: It was not you.

Devri: It was not me at all, to be in one place physically. And to have to be forced to bed … I had to stay in bed all day.  I had to be taken care of financially. I had a partner who helped take care of me, bathe me, cook dinner and do all the things that I was so used to doing on my own. That really humbled me … that year was just such a big transition for me. 

I was humbled in the way where I realized … first of all, it’s okay to ask for help. And it’s also very necessary. 

It was a means to my survival. And the mental weight was so much bigger than the physical stuff; as crazy as the physical stuff was … it was so painful physically, but the mental battles that I faced that first year on all those new medications and everything … I was so many different things. I was angry. I was depressed. I was all these things. It was just such a life-changing year for me. 

Lauren: So, tell us a bit about your diagnosis and and how it works. It’s Takayasu’s disease. Is this something genetic? Do we know why you came down with this?

Devri: Yeah, we don’t really know why. 

And that’s something that I’ve also had to release, the curiosity of how or why. 

My mom has an autoimmune disease, and her mother has an autoimmune disease. And I have two sisters, two biological sisters. So I do know that it runs in the family as far as autoimmune diseases go. But the interesting thing about Takayasu’s is that it affects women mostly in their ‘20s. That’s when they get diagnosed or become really sick. And women of Japanese descent, which is interesting. It has a Japanese name because a Japanese doctor discovered it. Because it was predominantly, I guess, found in women who lived in Japan. And so that’s interesting — because I’m not of Japanese descent. I took the test and everything. 

Lauren: I was gonna ask if you’d had your ancestry done!

Devri: I feel like I could probably pass for someone who is of Asian descent, but I have none. That was another interesting thing. 

We don’t know. Why me, why Takayasu’s, how did this happen? 

We don’t know if it was something that was dormant in my body and I was just going through a stressful time in my life, and then it kind of erupted after that. With autoimmune diseases, that happens. We don’t know. And I’m the only sister, I’m the only person in this generation who has the illness. So, it’s interesting. 

Lauren: So Takayasu’s is an autoimmune. 

Devri: Yes. 

Lauren: And is it something that you can pass on if you have a family?

Devri: I don’t think there’s enough information on that either.

Lauren: Because it’s such a rare disease. This is the thing with rare diseases, too, that they’re so often underfunded in terms of research because fewer people have them. 

Devri: Exactly. Right now, the biggest registry for Takayasu’s is in Japan, and it’s about 1300 patients. The number is super small. And right now in America, I’m one of every 2-3 million people. I live in Brooklyn … and I like to give that as an example …  because there are about 2.5 million people who live in Brooklyn. 

Statistically speaking, I am one person in all of Brooklyn, New York, who probably has this; that’s how rare it is. 

And if we went over to Manhattan, 6.5 million people there … that means that I’m one of three people probably who have it.

Lauren: It’s unbelievable, isn’t it?

Devri: It’s crazy!

Lauren: It must make you feel kind of special, though!

Devri: Absolutely. 

But it also can make me feel pretty alienated and misunderstood as well, because no one can really understand and relate … you know, not many people can. 

Lauren: Totally. So what steps did you take to control your health? You had that year in bed, and you were trying out different medications. And it sounds like the main thing was your heart, right? That all of this stuff was affecting your heart. So how did you get to where you are now where you’re functioning really well and you’re healthy? 

Devri: Like I said, it was more of a mental battle than anything. 

I think I had to really get a hold of the idea of death. The reality of death — because it’s not an idea, it’s true. And I had to come to terms with that. I had to find something inside of myself that told me it’s okay. None of us gets out of this thing alive. 

So if I want to do something, Devri, do it, and in order to do the thing that I wanted, or to pursue my dreams that I’ve always had … they’ve been in me, I’ve always innately had this ambition or this drive, and it’s never gone away since I was a little girl. In order for me to continue pursuing those goals and dreams, I told myself I needed to be more fearless. And in order to do that, I need to be disciplined around my diet, around my rest periods. I need to set hard boundaries for myself with friends and family; I need to be okay with saying no to things. That part, I still struggle with. 

Lauren: So do I!

Devri: Because I am such an overachiever. I’m such a ‘yes’ person when it comes to …

Lauren: And it’s always us. I can’t tell you how many times I’ve been sitting in an interview and been like … why is it us Type A people, the ones who get sh*t done, that it always happens to? It’s so interesting! 

Devri: Yeah. I think we just have a capacity to kind of hold and carry more. 

Lauren: Yeah. And you write about this stuff a lot in the poetry that you post on Instagram, and in all of your various writings. It’s really interesting. I’m fascinated by this idea of mortality … because, does Takayasu’s also affect your life expectancy?

Devri: Yeah, so I got diagnosed when I was 20 years old, a few months before my 21st birthday. I actually overheard a conversation between my parents and the doctors in the hallway while I was heavily sedated, and they were discussing the mortality rate. I’ll never forget that conversation because I don’t think they knew that I heard them talking. They were talking about funeral arrangements. And it really hit me. Yeah, it was a tough conversation to hear. But at the same time, I needed to hear it for some reason. I heard it so clearly. And so at 20, the life expectancy was 10 years; there was a 40% chance that I would live 10 more years, which is less than 50%. That’s less than half of a chance that I’ll get to see 30. My 30th birthday is actually in a few weeks. So I’m, like, ‘Wow, I’m here. I made it.’ 

I honestly didn’t think that I would live to see 30. 

And it’s the best year or the best season of my life yet. And I’m in awe and I take no credit; I really don’t take any credit for it. I feel like I’m just kind of sitting back in awe, just like a lot of people who know me, because it’s just so amazing — how much things have changed. I still deal with my pain but, as you know, this is our normal. This is kind of what we go through. When we see the pain scale in a doctor’s visit on the paper, I kind of feel like I’m always at an 8 or 9 … I don’t know. But for me, now my 8 or 9 on my pain tolerance levels are maybe a 2 or 3 because I’ve endured so much. I think it’s just my capacity to carry so much, I’m able to do it. And I know I’ve learned to be more graceful about how I handle it. I wasn’t always great about that.

Lauren: Well, how could you be great, from the get-go. I mean, that’s kind of a big thing to be carrying around, especially at such a young age. And in terms of the chronic pain, where are you feeling pain on a daily basis? Is it like chest pains? 

Devri: Yeah, I feel chest pains a lot, where it feels like I’m having a heart attack. 

Even still, I never want to get caught slipping where I undermine my own pain and think, ‘Oh, it’s not a big deal.’ 

But I’ve gotten better about monitoring things where I don’t feel like I need to always go tell someone, and I can just kind of ride it out and let it pass. I don’t know if I would recommend that as good advice. Because I do feel like we need to speak up if something’s going on with us, as I mentioned. But I do feel like I’m more in tune with myself, where I can sit and kind of let something pass. 

And that’s the thing about my pain — even if it’s excruciating, and there are times when it is absolutely excruciating, where I feel like I’m dying — I still know that it lasts only for maybe a minute. 

And that’s something that helps me, that I know I’m in the worst pain right now in this second — while I’m standing in line or while I’m doing whatever it is that I’m doing — but I know that it’s not going to last, and that helps me. And then it always passes. And so that helps me because in the moment, it can feel just so horrible. But that’s the great thing about my pain … even if I have it throughout the day, each little event is only maybe a minute or two minutes long.

Lauren: So you’re still able to function. 

Devri: Another place that I have my pain is my joints. That’s my main area. I walk a lot in New York. I have a lot of wrist pain, a lot of shoulder and knee pain. I have a cane that I use.

Lauren: Wow. It’s just amazing. So you overheard this conversation with your parents and the doctors. And obviously your mom sounds like she was there from the get-go, taking you to the hospital and everything. So although it sounds like you’re advocating for yourself really gracefully at this stage, did you or do you still rely on someone like your mother or someone else in your life as a personal advocate, and how’s that affected your relationships? 

Devri: Absolutely. I do rely heavily on my friends, on my community. I rely heavily on them, from a distance. I’m very self sufficient and independent in my personal life, and I pride myself on that. I like to get things done on my own. But I do rely on my friends for moral support, and to pick me up from the doctor’s office when I’m getting my treatment done and I can’t take public transportation. Even financially. 

I’m a freelancer, so I don’t have regular health care. 

And so I have friends who will pay for an office visit or pay for my medication, and they’re great in that way. And then of course, my mom … she’s been keeping a huge book of documents since the day I got diagnosed. So I can always call her and she’ll pull out the exact test from that year, or she’ll explain things to me in depth. Because she’s so analytical in that way, she’s great about that. She’s very science-based. She’s so great about that, where she can break down scientific or medical things for me in a way where I’m able to understand. Because it’s hard. I don’t always understand what’s even going on. I wish I could just open my chest and kind of look in. It can be really overwhelming, all of the numbers and all the labs and the tests. 

Lauren: So you’re relying on your friends and on your mom, and obviously you have these close relationships. Have you become even closer because of it? And do you think that your mortality is also playing a role in that? 

Devri: Yeah. I’m single, but I’m dating. And even when I go on dates, or when I hang out with potential love interests, the first thing I think about is: Would they be able to hold me down if I’m going through a major episode? That’s important to me, that’s something I have to ask. And for that reason I’m actually really grateful, because I understand that I don’t have a lot of time to play around or to do things super casually. So I’m really intentional about any new friends, any new lovers, anyone who I’m inviting into my space. Because I do protect my own body, mind and soul — so much and so hard. That’s important for me. It’s mortality — just the concept, the reality that death is going to happen. 

I don’t want to waste any time; time means a lot to me. And every single day, I try to make it all count.

Lauren: It’s interesting you say that because I feel like I only know you from Instagram, right, and from talking today. But I really see a joy for life and for being with your friends and family. That’s all throughout what you’re expressing outwardly. And it’s really great, I think, especially for other Spoonies … to be tuning in and seeing this kind of attitude, this kind of outlook. Because you don’t seem to miss an opportunity. You’re always getting out there. When a trip comes up, you’re taking the trip. When these new relationships come up, you’re diving in headfirst. You’re engaged with various communities. And I think we can all take a page from that book, because it’s something that really feeds you, too, doesn’t it? Like, it’s something that’s quite nourishing. 

Devri: Thank you!

Lauren: So, what does a typical day look like for you as you’re navigating your symptoms and managing pain — and also getting excited about being in the world and living life? 

Devri: So that’s basically what it all comes down to. I have the pleasure of being able to work remotely, because I’m a creative. So, I write, edit, and model. I go and do public speaking events. Ironically, these two things, I’m able to connect with a lot of people. I’m also able to have a lot of solitude and a lot of moments to myself. So, I love traveling and doing those things because I have a good balance. In the interim of getting to a place or destination, I have so much time to myself to write poetry, to listen to podcasts or music, or to reflect and meditate. And then when I get to the destination, I can turn on and I can become my extroverted self. And I can connect, I can tell stories and share stories. It’s great and I can engage with people. And then getting back home, I’m able to decompress through my solitude again. 

Lauren: It’s like a perfect balance, it sounds like.

Devri: Yeah, it’s a great balance. I love it. Like you said, it nourishes me. It really does, and it’s not one thing over the other. They both equally nourish me. I love talking to people, and I love hearing people’s journeys and stories — because humans inspire me so much. And I love even just people watching. I’m a big coffee shop worker, so I’m always somewhere in a corner listening to people, watching people, looking at their outfits, asking myself questions about …

Lauren: Existence!

Devri: Yeah! I’m that person; I’m a big philosopher. I’m always self-analyzing, just my own thoughts. I’m always just going inward. And then at the same time, I’m able to work and I’m able to put work out and create. So I’m always getting a good balance of those things. But yeah, that’s what a day in the life of Devri looks like. Every single day is so different. Before this, I was at a climate change protest outside. 

Lauren: Yeah, this is Climate Strike Day.

Devri: I was out there doing that just now, in the middle of the crowd of thousands of people. And I had my sign up, and then I put my sign down to get on the call with you. And then after this, I’m going to finish work and then I’m going to go look at an apartment.

Lauren: Amazing! It just sounds like a typical day for someone in their 20s or 30s. It’s really just getting sh*t done, but also engaging with your community. And are you having pain today? How are you managing all that in-between?

Devri: I’m good; right now, I’m pretty good. And it’s weird because, in the crowd we were standing for a long time, and …

When I’m standing still, I start feeling the pain more. And I think that’s also a metaphor for my life.

Which is why I like to occupy myself. I like to keep myself busy. People say I’m a busybody. For some people, it bothers them; they wish that I would just stay put. But if I am not constantly moving or trying to be productive or doing something that produces some result, then I will be thinking about how much pain I’m in. And it makes me feel like I’m suffering and agonizing in life. So I realized the trick to dealing with that is just constantly keeping myself busy. And not just busy, like busy work, but actually being productive. 

Lauren: It’s interesting, just hearing your mindset. And talking about mindset, I’m wondering if you’ve noticed, or if you feel, that mindset is playing a role in your continued health? That you’re in that 40% survival right now because you’ve been in such a good place mentally, and that has actually made your body function better?

Devri: Yeah, definitely. When people say mind over matter, and they say all of these things that we see on signs … it’s true. We can take my life as a testament to those sayings, because it is true. I’m a realist. I’m not one of those people who’s super naturally optimistic. I’m always questioning everything; I’m a critical thinker. 

Lauren: And that doesn’t have to be a negative thing. 

Devri: Right! I’m always asking the ‘why’ for everything. I don’t just accept things as they’re handed to me, or delivered to me. And for that reason, I still can attest to the fact that I do think that a lot of this has to do with my mindset. In my mind, I’m so alive. And I’m so filled with life, that I do think that it kind of naturally expresses itself through my actions. And even if I’m in pain … like I said, I could be in excruciating pain … I still am able to handle things gracefully, in a way where people around me wouldn’t even notice. Because I’m just so full of life. It’s like a light that emits itself. I wasn’t sad. I feel like I don’t have to do a lot of work for it. I think I put in so many years of that self-work that now it happens more naturally, where I don’t have to try as hard. But I am super intentional about the food I eat, the people that I’m around, the environments I’m in. I try to set really hard boundaries for myself; I don’t try to, I do. If something doesn’t make me feel comfortable, I will walk away and leave. And I don’t always feel the need to explain myself. For better or for worse. Yeah, it’s definitely a mental thing more than ever.

Lauren: Yeah. And I guess saying ‘mind over matter’, that’s a platitude, and it over-simplifies the actual state of being that you’re in. But that there is a very important mental component to your healing or to your wellbeing on a daily basis is really the point there. With that in mind, and despite the fact that your friends and family know that you have this illness, have you been confronted or forced to justify your illness to other people — in situations where maybe you’ve been having pain, or you’ve had to set a boundary that someone wasn’t cool with? Have you found yourself in situations where you’ve had to be, like: “You can’t see it. But I’m going to tell you there is something else going on.” 

Devri: Absolutely. I’ve had to do that more than I would have liked. I’ve had times where I have just opted out of explaining, and then that person never heard from me again. Because I do think that some people … I have to meet them where they’re at, and sometimes that means that if they’re not in a place to receive information or to become enlightened, it might not be worth over-exertion of my energy or effort to try to enlighten them or educate them on something. Maybe they can catch me in a few years when they’ve reached that point in their self-journey. But a lot of times, what I’ve realized is that it’s not my job to go out and inform everyone. If they’re in a place that I can meet them at, that feels comfortable to me, then I’ll go ahead and take that extra step in explaining something. I don’t want to put layers or levels on it … but just to simplify this, some people can be at a level 2 in self-work, and I might be at maybe a level 8. To me, that won’t be worth it; the return won’t be as great. I’m going to put out more than I might receive in that situation. And so I’ve realized some battles are not worth me fighting, and I have to just gracefully walk away. But if they’re at 5, and they’re super eager to understand but they’re just really misinformed, then I might take a few steps down, and be more patient with them and be more willing to explain.

Lauren: Which is also hugely graceful. We’re talking about someone who’s got limited time in this life and that you’re going to take the time out to explain it to someone … now you can just refer them to this episode of the pod and you don’t have to explain!

Devri: Yeah, I love this. This is really good. 

Lauren: Yeah, that’s great. So, we know that you’re doing some public speaking stuff, and you’re obviously engaged with a number of patient advocacy groups. Can you tell us a bit about your advocacy work, especially in the chronic illness space? 

Devri: Yeah. I’ve been speaking publicly since around 2015. I was a beauty editor for many years, and so I naturally started out speaking about beauty and wellness. But a lot of the conversations in the panels I was on focused on external beauty and external wellness — skincare fads and all of those consumer-based things that didn’t really resonate with my personal health journey. And so I don’t remember exactly how it started and where it started, but I wanted to serve my Spoonie community. Because I felt the beauty and the wellness industry … they’re booming, they’re great, they don’t need little old me. 

My Spoonie community needs me; the people who are chronic illness warriors and who are fighting this battle every day, they need to be affirmed. They need to continue hearing stories about people like them. 

And so that’s when I really started diving deeper into that space. And as I opened my mouth and started talking more about my health journey, that’s when I felt less alone. Because this is the one thing that separates me so hard from the average person. Nowadays, a lot of people have natural hair and Afros and there’s a lot of other causes and lifestyles that are out and open that I can relate to, and that’s great …

Lauren: That are all parts of your identity.

Devri: Exactly. There’s so many layers to who I am. But at the same time, it’s so rare for me to come across someone who has an autoimmune disease, and who’s open about it. 

We’re not as rare as we think we are, but I think a lot of people just don’t speak about it. 

I want to continue hearing those stories as well. So, in order to do that, I feel like I need to lead by example. And just keep blabbing my mouth about what’s going on, so that someone can write me an email and say, “Hey, I’ve gone through a similar experience.”

Lauren: Yeah, absolutely. So, in terms of that advocacy work and your experience in the medical system, you’re obviously very well-versed when it comes to being in the doctor’s office. In what way are you finding that our health system is working? And in what ways do you think it falls short, or requires improvement? I know this is a very big question, but I mean, you can really just think about it in terms of your own experience, especially. 

Devri: There’s so much that needs improvement. That’s my biggest challenge as a content creator. I freelance and so I’m very project-focused or project-based. A lot of my work comes in as sporadic projects that I’m given. Which is great, because I have a lot of freedom in my schedule and my creativity. At the same time, this type of model of job doesn’t provide me with consistent healthcare. And especially in the US. I would like health care for everyone. I feel like, just generally speaking, artists and creatives are not taken as seriously in the healthcare space, or else we would have easier access to basic healthcare needs that we have — let alone someone who has a chronic or rare disease or an illness that affects their livelihood. 

I just wish that we were taken more seriously.

Lauren: By employers as well as doctors, it sounds like. 

Devri: Exactly, yeah. 

Lauren: So how do you think that we could create that improvement in the medical industry? Or in our work environments? Are there inroads, do you think, and ways that we can really go about creating health care for all? Is it about electing the right people?

Devri: That’s a good question. I honestly don’t know. I wish I had the answer to that. I think, as far as decision-makers in office, we just need more compassionate people. I think that we have people who are sensitive to certain issues, but I’m still not impressed when it comes to healthcare. I’m just not impressed with what I’m hearing and what I see — because I’m affected and impacted directly, and I haven’t felt those things directly. 

I know that I pay an arm and a leg for my treatment, and the treatment keeps me alive so there’s no other way around it. I have to pay thousands of dollars, or hundreds of dollars, for medications. I have to. If I’m not responsible about getting those things and paying for them, then guess what … there’s no more Devri on this earth. And then I die, that’s really just what happens. I do think sometimes it feels like having a chronic illness is a punishment because of that. 

Because I am also this person who wants to create. I know who I am and what I contribute to the world, and it’s not working for someone else’s 9-5 company. That’s not me; that has not been me. Thankfully, I’ve been making a way for years and I’m privileged to say that. But at the same time, it’s a struggle. And people don’t understand that behind-the-scenes struggle to scrounge up money to pay for an appointment, or to go pay for a refill.

Lauren: And it’s interesting, too, because you live in New York, and obviously you’ve got access to some of the best doctors at the hospitals in New York. But by the same token, it’s also one of the most expensive places in the country to live. You’re sort of taking the good with the bad. I know it, and I think so many of the people tuning in today … we’ve been there, that feeling that you’re living paycheck to paycheck … you make your money and then it goes into your rent and your healthcare. And then it makes it harder to eat well, or to travel and see the people you want to see. But I guess that’s why credit cards were invented?!

Devri: I’m actually thinking of getting my first credit card, because I’ve never had one.

Lauren: Oh, that’s impressive! You’ve made it this long without a credit card? I am so impressed! (laughs) You’re so much more fiscally responsible than I am, hearing that!

Devri: Honestly, I need to do it though, I really do. I’ve been thinking about that so much this year. Because oh man, carrying cash on me all the time, it’s limiting. 

Lauren: And it can be exhausting work, too. And then that takes a toll physically and it’s sort of this vicious cycle, isn’t it?

Devri: Absolutely. 

Lauren: So, can you also talk to us about the role … because you talk about this a lot on your social media channel as well … can you talk to us about the role that identity for you — be that gender identity, race identity, all of these parts that make you who you are — have played in your health journey? Have you experienced prejudice in the healthcare system as a woman of color, but particularly as a woman of color with invisible disabilities? What’s it been like for you? 

Devri: Absolutely, even a woman of color who is queer. 

I’ve brought my partner to doctors’ visits before, and gotten a weird vibe from the doctors once they saw that this is my partner who happens to be a woman. 

So there’s just so many different layers to that whole struggle of just being taken seriously. And sometimes going to the ER, but having makeup on … 

Lauren: Oh, I know what that’s like, yeah. They think you’re well because you look fine, and you’re, like, “No, no, let’s take the makeup off so you can really see!” 

Devri: Exactly! And I’ve had doctors in the emergency room one time … I lived in DC and I remember this one man doctor who came in … I was, like, keeling over. I had a ruptured cyst. And then on top of that, I had a kidney stone. I was just in really bad shape. But he came in and he held my hand — and kind of caressed it. And he looked at me, deep in my eyes — even though I was probably looking so not good. But I remember it felt like he was hitting on me! It was so weird! He caressed my hand and said, “We’re going to get you taken care of.” I felt like I was on a date at a bar or something! And I was, like, wait a minute …

Lauren: And involuntarily as well. 

Devri: Yeah!

Lauren: And you were, like, ‘I’m not into you, buddy. I just want to feel okay!’ That’s weird. Well, you do hear these stories about certain doctors that have been going down recently, who have taken advantage of patients when they’ve been on anesthesia or when they’ve not been well. There are people who predate, who are predators … who go after patients when they’re vulnerable.

Devri: That’s sick.

Lauren: Ooh, it’s so creepy!

Devri: I’ve also had a male doctor who was checking my heartbeat, and he had a stethoscope. My hospital gown … I guess I maybe I had it on backwards. There’s usually a flap open in the front. And he just ripped it. He ripped it very violently and stuck this stethoscope under my breast. And the way he ripped it felt very sexual, but it just felt really gross. Really bad. And I’ve had someone … I don’t know what type of doctor … but he had to put his finger in my butt to check my stool or something. 

Lauren: A gastroenterologist, or something?

Devri: Yes. yYes. And he shoved it. And I remember I cried. I was maybe 21. But I cried afterwards. It wasn’t until years later, I think especially during the #MeToo movement and all, I started realizing, ‘Wow, that wasn’t okay.’ Even though my mom was in the room. She was looking at me; she thought my tears were just a result of physical pain. But I actually sat and cried for a long time after he left the room. At the time I couldn’t figure out why that bothered me so much. He just came and just did this thing real quick. And it’s almost like he was exerting some kind of …

Lauren: Power.

Devri: Power, yeah, it was like some kind of weird power dynamic that he got out of that. I never saw that doctor again. But I just remember that it felt really bad and sick. I felt so gross afterwards.

Lauren: This whole #MeToo movement … it’s awful that it’s had to happen, but it’s also so empowering for so many of us. We weren’t raised to disagree with doctors, were we? We weren’t raised to be, like, “That makes me uncomfortable.” And then to suddenly feel, ‘Oh, I can actually say no to things.’ Or, I can say, “That hurts.” Or, “I’m uncomfortable with this.” It’s different from the situation when you were in the hospital in DC and you were sort of out of it a little bit, it sounds like. It’s interesting, this time we’re in right now, this sea change that’s happening, and how that may affect the state of healthcare and how women in particular are cared for from this point onwards. I’m so sorry you’ve had to go through such awful experiences.

Devri: We all have stories to tell. And like I said, none of this for me is about me. I only share these stories because I just want to encourage people to know that it’s normal, that they’re not alone. And survivors and women and people who’ve gone through similar experiences … I just want everyone to know, “We’re all here. I see you, I hear you. I have a weird story that can match yours.” But it’s not even about matching your story. 

I’m telling my story to let you know you can feel comfortable telling yours.

Lauren: That’s a really beautiful perspective. In terms of the mindset, have you done all of that work yourself? Has that all been self-motivated, or have you gone to a therapist or done spiritual work? Has there been a combination of therapies that you’ve used to get yourself in the right headspace?

Devri: Yeah, definitely. The self-work stems from therapy. I was in therapy on and off since I was maybe in fifth grade. My parents definitely affirmed my unique identity from a young age. I’ve always been kind of this “disturbed artist” type, where I’ve naturally been more depressed throughout my life. My first really big bout of depression was when I was 13. And ever since then, they always have asked me for permission — which I love — they always gave me the freedom of choice. So, whether or not I wanted to go, and if I wanted help, if I was open to receiving help. I do feel very lucky in that way. They gave my sister and I a lot of freedom. Sometimes even when I was younger, I would be sad about that. As I was older, too. I was always wondering why, in my mind, they weren’t holding me accountable for things. They weren’t forcing me to go get involved in sports and things. But I realize they just saw who I was, and they trusted that I knew enough about myself to make my own decisions. And so therapy was one of them. And I started going to a school counselor when I was in fifth grade. And then I stopped for a bit, and then I started going to therapy again when I was, I think, 15 or 16. I also started meditating on my own when I was 12. That’s when I got into Enya and Celtic music. I got candles. I don’t even know how I learned about this. I don’t know if I saw something on TV or what, because no one in my family was doing this. But I became very ritualistic around coming home from school, turning off my lights, putting on my candles, putting on my Enya … and I would just lay flat and I would start from my toes and work up to my head and I would name off in my mind everything I was thankful for in my body. I was doing that in sixth grade. I don’t know, it’s so weird! 

Lauren: You’ve been “touched by an angel” somehow! (laughs)

Devri: Yeah! No one was doing that around me. I lived in a pretty rough environment and I had a really crazy upbringing. So I don’t know how I even learned that or what made me curious about it. 

Lauren: It was your reaction to the environment? And the fact that it was your reaction to the environment is very telling as well … you were already built to survive, weren’t you? You really set yourself up for success. It’s really interesting. So … I’m coming to the end of the interview, and I like to wrap things up with a couple of Top Three Lists. I was wondering what your top three tips would be for someone who has chronic illness or suspects they might be entering this world and joining the Spoonie club. What would your best advice be for people in this position? Top three?

Devri: Top three pieces of advice? First one is: Don’t be afraid to talk or to speak up. What comes with that is … we have to be unapologetic if we’re going to make people uncomfortable. It’s about you. It’s about affirming out loud how you feel. And you have to let go of any perceptions you think that other people are going to have. Because there’s going to be all kinds of things that people from the outside are not going to understand. They’re going to offend you. They’re going to downplay you, your symptoms. Be prepared for all that — but still speak up. Don’t let that stop you. 

Because the more you speak, the louder you get in your speaking, the more confident you become in speaking … the more people are going to listen to you. And they’ll believe you eventually. 

Lauren: So, use your voice. 

Devri: Yeah, yeah, use your voice. Honestly, I feel like that was one, two and three! 

Lauren: (laughs) I feel like this whole interview has been so peppered with such wonderful advice, too. Everyone’s going to be, like: Okay … mindfulness, meditation, therapy, changing my mindset. You’re such an incredible person. And I know people are going to be so inspired by this. But if there’s more you want to add to the pieces of advice?

Devri: I think it all starts there. Definitely. Just speak up. 

Lauren: Yeah, yeah, absolutely. And I think that’s not just people in the Spoonie community who can take that advice, right? That has wider implications, that kind of advice, and it’s really important. We were talking earlier about how you’re very mindful about what you put in and on your body, and your relationships. So I’m wondering if you have any treatment or lifestyle changes that you cheat on? Maybe you have guilty pleasures, secret indulgences — top three things that give you joy that you’re not willing to compromise on? Even if it’s a comfort activity if you’re having a flare-up with your pain, or something. 

Devri: Definitely sweets. I am all about sugar. I’ve been eating two donuts … oh, that’s so bad!

Lauren: I love donuts. They’re my favorite!

Devri: Yesterday in the morning, I had this really great donut that I took a picture of because it was so pretty. I had another really great donut at night, and I was, like, ‘Wow, I’ve had two huge donuts today.’ I stress eat, but I stress eat with sweets and with sugar. I’m not proud of it!

Lauren: But life’s short.

Devri: Yeah, it’s like, I do have to treat myself. And another thing would be coffee. I’m a big coffee addict. 

Lauren: You and I are going for coffee and donuts when I’m in New York!

Devri: We are! I already have a couple of places …

Lauren: Let’s go on a coffee and donut hop! We’ll make an afternoon of it!

Devri: And my oat mocha. I love oat milk, because I don’t drink whole milk, and it’s the closest thing to tasting like whole milk. So that’s something I have every morning. It also has a lot of calories and all that good stuff, but I don’t drink or smoke. I’ve gotten rid of those vices years ago. So that’s why I make up for it with the donuts! (laughs)

Lauren: I think that’s fair! So, donuts and coffee. And mocha with oat milk. Is there anything else? 

Devri: No. Honestly, that’s it. And sometimes the donut is a cupcake. I can switch all of those out. But it’s really those two things. Those are my really bad habits. 

Lauren: I really feel you on that. Do you have anything else that you want to share with our listeners? And of course, please share where they can find you and your work.

Devri: I feel like we all keep up with each other because we all have to stick together as advocates. We’re not just survivors, but we’ve done something really special with our survival. I’m really just proud and excited to be a part of this club because it just gives me hope. People like you, you give me so much hope.

Lauren: It’s a very loving club, isn’t it? We’re quite inclusive, I would say, as a club. I’ve had people on who have said there are certain cliques in the different factions of the chronic illness community. And I think that certainly exists. But I think for the most part, this is one of the more accepting communities because really you have to take people at face value; who they tell you they are is who they are. And so there’s a lot more natural, open acceptance in that way. 

Devri: That’s so true. We’re from many different walks of life. But we all have this really rare and special thing in common. And that trumps every other thing that we don’t have in common.

Lauren: And it really does make you instantly connect with someone on a much deeper level, which is part and parcel of why this podcast exists — because these conversations are always so much deeper than you would expect just meeting someone for the first time to be. And it’s because there’s that shared common ground. 

Devri: And it’s so hard to explain it. I feel exactly what you’re saying, to my core.  And I could say that out loud. But someone who doesn’t understand just wouldn’t understand.

Lauren: And that’s fine, because they’re not in the club!

Devri: Right! And there’s still so much to learn, I think, too. And someone on the outside … there’s a lot of beauty in all of this. The last thing, I guess, is that everyone can follow me and find me … everything is my name. So Twitter, Instagram. Even YouTube, I have stuff on there. I’m a writer; I was an editor for many years, so I have a lot of written content in blog posts and things like that. So even if you just Google my name, guarantee you’ll find some kind of source of hope for some topic that you’re dealing with when it comes to mental health or relationships or city living or creative entrepreneurship … anything. My name is Devri and the last name is Velazquez … just type in a V and it will pop up!

Lauren: And we’re going to link to a lot of this stuff on the website page, too, so people will be able to just click through — in both the transcript and in the little intro before your episode. Devri, this has just been such a privilege to chat with you today and to get to know you, and to welcome you to the Uninvisible part of the Spoonie club! I really look forward to keeping tabs on the rest of your health journey. Please keep us posted on all of the work that you’re doing, and we’ll continue to share it with all of our followers. 

Devri: Awesome. Thank you so much!

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