Transcript

Lauren: Okay guys, thank you so much for joining us. I am here today with Bukky Ade. Bukky is a sickle cell advocate. She's also a filmmaker and a photographer; you may recognize her as @KweenPhotos on Instagram. And she's going to talk to us today about life with sickle cell anemia. So Bukky, thank you so much for joining us.

Bukky: Thank you for having me. I'm so glad to be here.

Lauren: Such an honor. We’ve been in touch for a while and it's nice that we've finally been able to make it happen. So, you may know, I love to start at the beginning of the beginning. I would love for you to tell us when and how you were first diagnosed, when you first realized you were sick, and what steps you've taken to control your health since then.

Bukky: As you know, sickle cell is a genetic blood disorder. So you're born with it. But my mom told me that my first crisis, I think, was when I was 2. I had an infection; I still have a scar from it on my right arm. I was born in Nigeria, so, you know, I don't know what the state of medical care was in the ‘90s in Nigeria, but that's how they treated the infection. And then we came to the States. And I think my first big crisis I remember was, I was a pre-teen, maybe, I was 12 or 13, and I was staying with my aunt for the weekend because my parents had traveled. And they were so shook, they did not know what to do.

I ended up going in the ambulance for the first time. That was the first time I really remember having a crisis.

Lauren: And realizing how serious it was, it sounds like, too.

Bukky: Yeah, yeah.

Lauren: Wow. So were you diagnosed, then, when you were born, when you were really little — before this first infection, when you were in Nigeria?

Bukky: Yeah, I'm gonna guess the the infection is how my parents knew.

Lauren: So neither of them knew that they were carriers of the sickle cell trait, maybe? 

Bukky: Well, my oldest brother has sickle cell as well. So they found out then. 

Lauren: Oh, interesting. Wow. You guys both have it. So how have you been able to stay healthy and maintain control over your health since being diagnosed and going through these crises? And for those who are tuning in, crises are generally chronic pain and really serious body pain. And often people end up in the hospital, with crises. So how have you been able to maintain your health so that you can prevent crises from happening, and you can stay well and active?

Bukky: Honestly, it’s God. Because I know sometimes, as much as I try to prevent it, sometimes I still live recklessly … aka, I think I'm a normal person …

Lauren: Oh my God, I’ve so been there! I feel you so hard. That was me last week!

Bukky: I’ll really be looking out, but also, you just have to know your triggers. Cold, I know, is a trigger. Exercise, I know, can be a trigger.

So for the longest I wasn't exercising, but then I started again, and I just had to learn what my limits are and how much I can go.

Lauren: Yeah, exercise and movement. It's so important, but then when it's a trigger … I’m with you on that, too, because I get really fatigued really easily. And it’s, like, well, how am I supposed to even be moving my body when moving my body is the thing that triggers me. It's a lot. But it sounds like you’ve figured out the balance for yourself.

Bukky: Yeah, I think now that I'm getting older, the biggest thing I need to figure out how to control is stress. I think that’s what's caused my last couple of crises. The thing is, sometimes your body is stressed, but your brain doesn't even know it.

Lauren: Oh my God, you’re speaking to my heart right now. That is so absolutely true. And I think stress is so insidious, too, because our lifestyle is organized around constant stress, being a person living in the US … and the work/life balance, which we'll get into as well. We're expected to be overachieving and be overwhelmed all the time.

Bukky: Yeah, pretty much. I'm trying to get ahead of it, basically, trying to see what is causing the stress. Because you can't really mitigate all of the stresses in your life. But we can try, I guess.

Lauren: What does that look like for you in terms of trying to get to the root cause and manage that? Is it meditation and more awareness?

Bukky: I don't know, I've just started realizing that, so I haven't even gotten that far.

Lauren: Premature question!

Bukky: ...

 If you’ve got the tips and the gems, let me know!

Lauren: Meditation. I hate to be that person who’s, like, ”Have you tried yoga??” (laughs) But meditation really helps.

Bukky: I’ve just started this year. Last year, I was really big into lifting. I was, like, I'm gonna do yoga. And then COVID happened, and all the yoga studios closed, and I just haven't done any at home.

Lauren: So it sounds like you had crises growing up, but it really is, at this point, about mitigating stress so that you can prevent future crises — and also staying well in the interim so that you're not running yourself into the ground. I know you mentioned you had this crisis as a child with the infection, and you also had the experience when you were with your aunt as a pre-teen. Did you find that you needed to develop an advocacy relationship, either with yourself or with anyone else in your life along this experience journey to diagnosis and treatment? And has that impacted your relationship with either yourself or an outside advocate?

Bukky: I think that started once I moved out of Pediatrics; I started advocating more for myself. Just because, adult care … oh man, I was not ready.

Lauren: Well, I'm glad you bring that up because this transition from pediatric to adult care … it's one of the common themes that comes up in these discussions … that it's a really shocking one, because you go from all the care to you having to do all the work. And no one teaches you how to do that. You have to become that advocate, hell or high water, right?

Bukky: Right. And it’s taken me a couple of tries. I remember I went to a couple of hospitals that basically don't know how to treat sickle cell in the ER.

Lauren: I'm like shaking my head. You’ve got to be kidding me right now.

Bukky: ...

It’s, like, I didn’t come here just to keep taking the same medicine I have at home.

I remember I was at a different hospital, which by the way is the hospital that my hematologist works at, and they were, like, “Oh, we see you bouncing around hospitals. Why is that?”

Lauren: Oh, no. Did they think that you were seeking pain medication?

Bukky: That’s always the case. That is always the case.

Lauren: And do you think this is because you're a Black woman, and they were, like, oh, she's suspicious. Do you think it was some inherent racism?

Bukky: Definitely.

Lauren: Yeah. We're gonna get into that, too. But this is an interesting one, because probably the largest percentage of the population affected by sickle cell is people from Afro-Caribbean backgrounds. So there's some racism that comes along with the treatment of this illness as well. In terms of becoming your own advocate, what's that journey been like for you? Because I know that you're settling into this role as a sickle cell advocate for others, right? But going from being a child and being taken care of, to having to do the advocacy legwork yourself, what does that look like in terms of your self-worth and how you see yourself?

Bukky: Wow, that's a big question.

Lauren: I don't joke around! We get straight into it. (laughs) 

Bukky: I think it's just me questioning if I’m strong enough, honestly, to do the work.

I feel like recently, I'm just tired. Between actually being sick and advocating for myself, I'm just tired.

No one person should have to do all of this work. I would just like to go in the hospital and be taken care of, without having to tell the doctor what to do, without having to fight the doctor when they don't want to listen to me. So for me, it's just about, I guess, stamina and learning and trying to figure out the best way to communicate these things without it feeling like an additional burden.

Lauren: Talk about stress, right? It’s sort of a vicious cycle, the stress cycle, I think, and this is also personal. It's hard not for it all to be like a personal stressor, right? This is your health. I touched on this idea of balancing work and life and how stress also affects our day-to-day. And I'm wondering what a typical day looks like for you? How are you maneuvering around the expectations of the world and your life as you manage potential crises and try to keep triggers at bay?

Bukky: Pre-COVID, specifically last year, I'm going to say that was non-existent. I literally ran myself to the dirt. I produced my first film last year. 

Lauren: That's a huge accomplishment. Congratulations. 

Bukky: And I also got snatched last year. 

Lauren: What does that mean? 

Bukky: Fitness wise, I was losing weight, and I almost had abs. I was really close to having abs. 

Lauren: Wow, okay, I'm impressed.

Bukky: Then my health went to sh*t. Literally, starting in July. My film screening was in August, and then in September, I was in the hospital twice.

Lauren: So it’s like, pursuing your passions has made you sick.

Bukky: Kinda. Because I still have a day job. I'm a technology consultant. So I would come home and work a little bit on my film — and then go to the gym and sleep on my feet. Or if I didn't do gym, then I would just do the film. Or if I didn't need to film, I would just do the gym. I felt like I managed; I didn't feel super stressed.

I honestly don't know if the two are related because I feel like I've always been, like, go, go go.

Even in college, I was in a bunch of activities, extracurriculars, and had a job. And I was only in the hospital one time in college in four years.

Lauren: That’s pretty impressive, yeah.

Bukky: Prior to last year, I hadn't been hospitalized for four or five years.

Lauren: Things got a little out of control. I guess, repeating that cycle, not giving yourself downtime. And it's that tough thing. It's what you mentioned before … sometimes your body knows before your brain does or before your heart does … you know that your body will shut down when it needs rest. But it never happens at a convenient time, does it.

Bukky: Ever!

Lauren: Never, ever! What about now, with COVID? Has that, in a sense, reduced some of your everyday stressors because everything's a little more contained now?

Bukky: Yes and no. Yes, in general, because I have less to do. But no, because I’m mentally still putting a lot of pressure on myself. I'm trying to get over the guilt that I haven't worked out all year pretty much. I haven't been able to go to yoga. And I want to work on my next film and stuff, but I guess I haven't been motivated. But also I want to give myself time to just rest and not do anything.

Lauren: And that ever-looming question of, is COVID the time that we're all supposed to be resting, right?

Bukky: Right, because I remember at the beginning, everyone was, like, “Oh, you should come out of this with your film done, and your book written. Come out of it having lost a few pounds.” And I'm just, like …

Lauren: I’m over here taking a nap!

Bukky: Right? Honestly. I actually took this week off, because I was in the hospital two weeks ago. I should have taken last week off, but I was trying to push through and see.

And then I was also feeling guilty about taking the time off, because I had just taken a week off from being in the hospital.

Lauren: Well, talking about that guilt, too … do you think that's also a particularly female thing? If you were a dude being, like, “I need the week off,” do you think that you would feel less guilt? Is that a guilt that you put on yourself because you've been taught to push through things?

Bukky: I don't know, I don't think that's a female thing. I think that might just be a chronic illness or sickle cell thing.

Lauren: I think it’s a chronic illness thing. Not just sickle cell, trust me!

Bukky: I was out in March, I was out in April. And then in June. I didn't take any time off after those hospitalizations. I just went right back to work. So this time, I had been feeling like I needed time off, but I wanted to save my PTO for my brother's wedding. But now I’m, like, I need to take this time off for my mental health and just do nothing. Or think about myself and not have to wake up and log in. Even though we are at home, it’s still taking up mental space. And that's what I need to clear up.

Lauren: Yeah, I totally understand where you're coming from. So you mentioned that you've been in these situations where you've gone to the ER and the doctors haven't even known how to treat sickle cell. Which is appalling to me. Can you talk us through any situations that you have may have been in, where you've been forced to justify your illness to other people who didn't understand it because they couldn't see it? Because it wasn't like you were in a wheelchair necessarily, but because it's invisible, you had to validate the existence of your diagnosis to people who just didn’t get it?

Bukky: It's crazy, because I feel like it's easier in the outside world than it is in the hospital. I actually was in the hospital and I was on a PCA. Basically, it's when you push a button to get the pain medicine, and I was, like, “This PCA isn't doing anything for me. Can you increase the dose?”

And the doctor was like, “No, because I don't want you to overdose. And it seems to be working because you fell asleep.”

Lauren: Oh, you can't sleep when you're in pain … of course you can sleep! You're so used to chronic pain. Wow.

Bukky: I literally told her, “Yeah, because pain medicine is the only reason why people fall asleep.” 

Lauren: Good for you. 

Bukky: I was so shocked that she actually said that. Like, seriously?

Lauren: Well, I wonder about that, because this with sickle cell, the crises cause chronic pain, and so you're going into the hospital and requiring pain medication. Is this also something where you're being judged by people who presume that you're a pain medication seeker and that you're an addict? It also sounds like you've largely not been taken seriously when you tell people you're in pain. That's the general experience … either that people don't even know what sickle cell is, and they don't know how to treat it — even in the hospital where your hematologist works. Or they presume you're an addict or make some kind of judgment about you because of the way you present.

Bukky: I think based on the male experiences I've heard, maybe it's a little better being a female. I think, just in general, my experience has been that people don't know how to treat sickle cell and they don't believe I'm in pain … obviously, because I know how to manage it. But even when I go in kicking and screaming, then they think I'm being dramatic.

Lauren: I've had a man on the show with sickle cell, who said that his mother's advice when he went into the ER was to be crying. Because if he went in kicking and screaming, people would take his pain more seriously. Whereas when you're a woman kicking and screaming, you're dramatic. So let’s dig a little more into this concept of prejudice in the healthcare system, particularly in regard to self-identity or the way that you present. You’re a woman of color. Can you see these circumstances being vastly different if you presented otherwise — if you were a white woman asking for pain medication, if you were a man. Aside from male/female that we just talked about, what role has race also played in your experiences?

Bukky: ...

Honestly, I think my experience might actually be worse if I was male, just because we know how America treats Black men.

I mean, obviously, we know America also treats Black women like sh*t.

Lauren: Yeah, I mean, the health care system kills Black women and the cops kill Black men. That's pretty much what we know. Right? So you've literally had that experience in the system where you've been brushed aside and not taken seriously.

Bukky: Yeah, I've waited in the ER for five hours, just to be given not even the medicine that I need.

Lauren: Would you also say that racial and gender inequality in the healthcare system is a public health crisis?

Bukky: Yeah, yeah. 100%.

Lauren: And a lot of your experience has to do with the fact that sickle cell anemia disease largely affects Afro-Caribbean communities and other communities of color. This is one that some of these ER doctors aren't even educated in. And then when they are educated, they're not taking it seriously. Have you ever had a positive experience in an ER? It sounds like it's been pretty tough the whole way through.

Bukky: I do appreciate that there have been one or two doctors who ask, “What do you normally do?” And then they actually listen and do that. I've experienced where they wanted to, but their procedures don't allow them to. A lot of ERs only give morphine, and they don't give anything stronger. At that point, it's above them; it’s a systematic thing, obviously.

Lauren: But then it's also related to racial oppression in the healthcare system, too, if you're not going to provide solutions for people who need something stronger than morphine, legitimately.

Bukky: As soon as I go to an ER where they say, “We can only give you morphine,” I already know that I'm going to be admitted, because that's not gonna do anything.

Lauren: So are you picking and choosing your hospital, too … if you end up in an ambulance, you're going, “Don't send me here. Send me here”?

Bukky: Yeah. I just transferred care to Hopkins now that I'm in this area. They are the best at sickle cell in this area. Adult sickle cell. That’s been dramatically different, like worlds apart.

My hematologist is a Black woman. And the first time we spoke, I almost cried because she just knew, she just understood. I didn't have to explain anything.

Lauren: It's interesting that you bring that up, because I think one of the things that you and I also shared with each other a couple of weeks ago was about the app, Health In Her HUE, right? Where you can be matched with a health care provider who literally looks like you, so understands your experience. It sounds like you had to do that.

Bukky: Yes, my primary care now is also a Black woman. So I’m hoping that starts to get better. But that was after years of me just kind of blowing in the wind with adult care, and going with the recommendations of other people that I knew. I knew I should have changed hematologists and primary cares a long time ago, but I don't know … it just didn't seem like that big of an issue — until it became a big issue.

Lauren: Well, that's our unwillingness to make ourselves a priority and make our health a priority when our society says ‘Keep going, keep going.’

Bukky: Yeah, yeah. Oh, I said I have other things I need to do. I remember last fall, I was so tired. I felt like I was in and out of the hospital, in and out of the clinic. I was, like, I do not want to make another appointment.

Lauren: Absolutely. Well, there are services that exist to do that for us, because it can be such a full time job, right. It's exhausting enough to have a chronic illness, let alone be trying to live a full life.

Bukky: A full life, yeah.

Lauren: The Black practitioners who you have now, these Black female practitioners … was that by design? Were you specifically going, let me find a Black female doctor who's going to understand my experience more deeply. Or did it just happen — and it was a relief?

Bukky: ...

Honestly, I didn't think I was ever gonna find a Black female hematologist.

So that happened by happenstance. But the primary care was intentional.

Lauren: It makes sense. It's so wonderful that of all the places in the world, your Black female hematologist is at Hopkins. It makes a lot of sense. So, let's talk about advocacy work. Can you talk to us about your advocacy work, and what that looks like, and how it fits into your life?

Bukky: My brother actually started a website called SikCell. That’s been a while now. And I just help him be the community manager for that, managing the discussions and things that go on there; it’s basically a social network for people with sickle cell, and also caretakers. Additionally, as a photographer, I've started a project called The Warrior Series. Rather than photographing sickle cell warriors, as we call ourselves. One of the times I was in the hospital, I was looking for documentaries on sickle cell. And everything I saw was just like … oh, people with sickle cell don't live past 30 … or they can't have kids … or all these other things that were just really old and outdated and sad. And I just wanted to create a different narrative. So if you're in the DMV, and you have sickle cell, and you want a free photo shoot, hit me up!

Lauren:  I love that. When we get to the end of the interview, we'll also share where people can find you and how they can get in touch. But it's so amazing because this has also overlapped with current events … a lot of the Black Lives Matter marches that you've been going to, and Juneteenth, and it's been beautiful to see these aspects of who you are come into play in your photography work. I know it's probably very exhausting right now, and going to these marches is hard, too, when you're chronically ill, right? 

Bukky: Yes. I honestly felt reckless going, because I was, like, uh, I don't really have an immune system right now.

Lauren: I know, and COVID, yeah. But the good news is, the studies have shown that the COVID spreads that have been happening have not been related to the marches.

Bukky: I know!

Lauren: You were doing the right thing.

Bukky: Yeah, but I went out there with my mask and everything, and I just thought it was important because I knew no one was going to be photographing the Black Disabled Lives Matter March. So I thought that was important to go to. And then Juneteenth. Living in DC, I just felt like that was also important to capture. I hadn't really done street photography since the Women's March and Trump's inauguration. That was a while ago.

Lauren: 2017. Yeah, that was a fun time. A fun time overshadowed by a horrible time. But it's just amazing because what you're doing is creating visibility, right? This is all about the invisible. This whole show is based on the invisible. And what you're doing in terms of advocacy work is addressing directly this idea of visibility, and showing all the aspects that make us human. And that make the Black community so vibrant, too, especially with the recent marches. So that's been really beautiful to watch, and I encourage everyone to go over to Bukky’s Instagram and check it out. Let's also talk a little bit about the health care system. We've seen it really not work for you in a lot of ways — but it's getting better. Overall, in what way are you seeing the healthcare system maybe work? You don't have to say that there's anything that works if you don't think there is. And in what ways are you seeing it fall short and requiring improvement?

Bukky: I think it works when you have doctors that care. 

Lauren: Makes all the difference.

Bukky:  It really does. It really does. 

Lauren: But it sounds like your experience overall has also been in the wider world of health care, not being taken seriously and not having practitioners who listen. But at Hopkins, it's been a totally different experience. It's been a lot more comprehensive, it sounds like.

Bukky: I don't want to sing the praises of Hopkins too much!

Lauren: Yeah, everyone's gonna run into roadblocks.

Bukky: And we know they have a problematic past.

Lauren: Talk to us about that. For those who are listening and who are, like, what does she mean? What is the problematic past? What happened?

Bukky: Just the way they've treated Black people.

From Henrietta Lacks... to just a general disregard.

Lauren: Medical racism. And for those who don't know who Henrietta Lacks is, there's a film, The Immortal Life of Henrietta Lacks, that’s available out there. Just the idea that Black people are just bodies and not human, right? That's what that is all about. It's about testing on Black people, not telling them, using their bodies, basically. And it stems from a tradition of slavery.

Bukky: Right. It's funny because I was talking to my roommate about how Hopkins hematology is so good, and she basically alluded to the fact … yeah, if you've had years to do whatever to Black people, then of course, your research is going to be extensive.

Lauren: Wow. But also rarely acknowledging Black people in the research as well, right? Little research is done on Black subjects. It's already mostly male subjects, let alone the male/female thing. But then race is so rarely considered in research, and we're trying to create change around that. But absolutely, we don't know enough. But the research that has been done has been manipulative, it hasn't been ethical.

Bukky: Right.

Lauren: So I want to know, what would you say if someone were to tell you, “I think I have a

chronic illness." Or maybe they're diagnosed with sickle cell. What would your Top Three Tips be for someone who is living this Spoonie life, living with invisible illness? What would you recommend to people who are in the same boat?

Bukky: The first thing that comes to mind is, give yourself more grace. Oh man, that goes a long way.

Just allow yourself to do the best you can.

I know it sounds so cliche and corny, but at the end of the day, your health is more important — because you can't do any of the other stuff you want to do if your body isn't letting you. And then the other thing that Jameisha from YouLookOkayToMe actually told me was that you basically have to re-envision what your life looks like. That's something I've been working through. I don't think I fully accepted that. I still want to live the life that I had planned and imagined for myself.

Lauren: An able-bodied life, right. One where there’s no roadblocks.

Bukky: Right. And that's not saying that you won't still live a full life, but a full life might just look different for you. Maybe you won't go to the gym four times a week anymore. Maybe you'll just go once or twice a week. As long as you're still making that effort and getting out there.

Lauren: Yeah, knowing that that's enough.

Bukky: Right. And the third thing would be, find good specialists, people who care about you and will listen to you. Because that goes a long way, man; that goes so far. Like I was telling you before, my first rheumatologist … when he told me about the diagnosis, I was, like, “Okay. Can you tell me about it?” And he literally told me to go on WebMD.

Lauren: Wow.

Bukky: Yeah, I was so in shock. I couldn't even respond. I was like, wait, why am I paying you if…

Lauren: … if I can go on Google?! Absolutely. I think that's great advice. Find a specialist who really listens to you and believes you.

Bukky: Even if that means you have to go to 10 different people, it’ll be worth it.

Lauren: So true. This is my favorite Top Three List. What are the Top Three things that give you unbridled joy? Obviously, you've had to make lifestyle adjustments to work around potential triggers to keep your body well. But what are three things in your life that you will not give up, no matter what? These can be just things that you turn to you for joy, guilty pleasures, secret indulgences, comfort activities when you're in a crisis. What are those things that you cling to, to keep a smile on your face?

Bukky: I’ve recently started a post-hospital ritual of getting a manicure and pedicure.

Lauren: I love that, and she's got the manicure right now!

Bukky: I must admit, I felt a little reckless going to the nail salon during COVID. But I really just had to.

Lauren: You treated yourself. Well, that's the thing. It's that idea of, I deserve this. It makes me feel beautiful. It makes me feel complete. And that's really important and you need to prioritize it. All right, what else?

Bukky: ...

I will say, I've recently started understanding the art of a bath, like a proper bath with bubbles.

Lauren: Oh, yes. And some candles. Don't forget your candles!

Bucky: Yes, with a nice little book.

Lauren: Yeah. It's really embracing relaxation from home. I love that. 

Bukky: And the third thing would be music. Oh, man, music gets me through. When I'm in the ER, when I'm in the hospital … I spent the whole week in the hospital by myself because they're not letting people in because of COVID.

Lauren: That's really hard. It's hard enough to be in the hospital, but when there's really no one around, and you don’t even have social interactions to keep things light for yourself.

Bukky: Exactly.

Lauren: Yeah. Music’s really important. I love that. What would your ask be for listeners today? What can they do to support you and your work, your advocacy work and your community? What can people do to show up for you right now?

Bukky: I would say, really just learn about sickle cell. Because there's still so many people, Black people in particular, who don't know. Every year during either World Sickle Cell Awareness Day, or in September during Sickle Cell Awareness Month, I post: “Do you know your genotype?” The same people, or even new followers, still are, like? “What is a genotype?” And I’m, like, yeah, we need to talk about hemoglobin and genotypes more.

Lauren: Tell us right now.

Bukky: Basically it's the way you know if you have sickle cells or sickle cell trait. The main ones are AA, which means you don't have it. And then there's AS or AC, which means you have the trait. And then there's the different mutations. The most common one is SS and then there's hemoglobin SC. And there’s beta thalassemia.

Lauren: So it's basically your genotype is based on your blood work, but it's the genetic code in your blood that tells people whether or not you have sickle cell or sickle cell traits?

Bukky: Right, and you get it from your parents. 

Lauren: So, learn about sickle cell. Where would you tell people to go? Do you have a few resources that you would recommend?

Bukky: I would say Sickle Cell 101 is really good. They put out a lot of general and specific information on what sickle cell is, life with sickle cell, and advocacy and general stuff. I know they've been to congressional hearings and things like that. They have a podcast now, too. 

Lauren: They do. 

Bukky: Obviously you listen to it.

Lauren: Yes! Go check out Sickle Cell 101. So what's next for you in your wellness journey, and in your advocacy work? What's next for Bukky?

Bukky: In my wellness journey, I guess just trying to manage stress. I'm just taking it one day at a time. That's all I've been telling people for the past month, honestly, because I don't want to overwhelm myself.

There's a lot going on right now. And thinking more than a day or week at a time is personally just too much for me right now.

And for my advocacy work, my next film … I'm trying to get funding … it's going to be called Chronically Crushing It and I want to interview celebrities, entrepreneurs, famous people, millionaires — people who've made it with chronic illness — and ask them: What’s the secret sauce?  Because I need to know! Nick Cannon, Ava DuVernay, Selena Gomez, I know all have lupus. The president of Howard University, who's also a surgeon, has sickle cell. And he still operates to this day, even as the president of HU. Like, sir, you need to tell us. How did you get through med school with sickle cell?

Lauren: I can't even imagine. It's funny. I watch Grey's Anatomy and I often sit there thinking … these people don't sleep. How could you do that? I can't, I can't function.

Bukky: Yeah, I’ve been spending a lot of time thinking about this. Doctors are really one of the healthiest people, or the healthiest groups of people. And I think that's what the disconnect is a lot of time in the care. They’ve never been sick, or seriously sick. And so they have the knowledge but they don't have the …

Lauren: … the first-hand experience. Yeah, that's a really good point, because you have to be able-bodied to get yourself through med school. Also with a lot of these chronic illnesses, I think, as we age, our triggers become more severe, right. As we're naturally aging, sometimes our bodies tend to react more severely to triggers and stuff. Because in my 20s, I was fine. In my 20s, I could have pushed through stuff. But in my 30s, I can’t. So maybe that's part of it, too, if you do it on the younger side! So, next for advocacy is some more film work and working on that stress day-to-day. Bukky, can you tell everyone where they can find you, where they can find your work, and remind them of your brother's website as well?

Bukky: Yes, so the website for the sickle cell community and caretakers is SikCell.com. And you can find me at KweenPhotos on Instagram and Twitter, and on Facebook, backslash Kweenphotos. And on YouTube …there’s not a lot of YouTube content. September, there might be more YouTube content, hopefully. And at KweenPhotos.com, you can purchase prints now. I finally set up my print shop.

Lauren: That’s awesome. And there are some beautiful images in there from the marches and the Black Disabled Lives Matter march, too. Thank you so much for being on the show. It's such an honor to talk to you, to get to know you better — because we've been trying to connect for so long, really for you to have taken the time today. The last few months in particular have been extra exhausting for the Black community. Not that every day isn't already exhausting. So I really want to express my gratitude and appreciation for you taking the time and giving us your presence today. Thank you so much.

Bukky: Thank you, and thank you for the work that you've been doing. I love how you amplify melanated voices.

Lauren: I’m tryin! It's very core to the work. This is the thing, isn't it … if we're going to be allies, we have to learn how to be intersectional and fully intersectional allies. And look, I'm not perfect. We're all learning as we go. But I'm always trying to make things better. So thank you for helping me do that. 

Bukky: Of course. As I get more into the advocacy world, I notice the space is very white.

Lauren: It’s very white! Hashtag advocacy so white. That was one of the things … when I first got into this space, too, that I was really shocked by. There wasn't a lot of representation; it made me feel uncomfortable. And it's surprising how comfortable and easy some white people are about it, because they just don't think to look outside themselves or their communities. And I think we need to challenge that, because that's not really what chronic illness or disability or advocacy really looks like, is it. In fact, we learned advocacy from Black women.

Bukky: I think that’s why I’m so obsessed with YouLookOkayToMe, because she was the first Black person actually publicly, openly, talking about chronic illness.

Lauren: And has a really strong following and people who are really plugged into what she's doing. She's amazing. She's an incredible person. I'm honored to work with her and call her a friend. And to be sharing space at the table with someone like that. I mean, Jameisha is really incredible. Well, thank you so much. And thanks for reminding us how white this space is. Because guys, if you're tuning in, we're trying to change that narrative. And it's not about trying, it's about doing, right? Reminding everyone that the voices out here in the advocacy space — the patients, the leaders — they’re not all white. In fact, most of them aren't. So if we really listen, and we really dig … hopefully, you won't have to dig so much in the future. It’s a smorgasbord. But it really is a great reminder to this community that we need to be looking. You need to look outside your own experience, always. Bukky, thank you so much.