Episode 83: Fibroid Awareness & Medical Racism w/ Tanika Gray Valbrun of The White Dress Project

Episode 83: Fibroid Awareness & Medical Racism w/ Tanika Gray Valbrun of The White Dress Project

Overview

Tanika Gray Valbrun is an award-winning journalist and women’s health educator. She is the founder of non-profit The White Dress Project, an organization dedicated to bringing awareness, raising funding, and increasing education about uterine fibroids. Tanika lives with uterine fibroids herself, one of the 80% of Black women in the US to develop them. As the founder of The White Dress Project, Tanika has successfully worked with doctors, health advocates, and elected officials in multiple states to get legislation passed declaring July Fibroid Awareness Month. Recognized as a thought leader and patient advocate for uterine health, she has also spoken at various events domestically and internationally. In addition to encouraging women to be their own health advocates, Tanika works as a Content Producer for CNN, where she has been awarded three coveted Peabody Awards for her contributions in journalism. She is also the recipient of Georgia Trend and Atlanta Business Chronicle’s 40 Under 40 Award. This episode is a special one, highlighting the current race crisis in America as well as raising further awareness of fibroids during Fibroid Awareness Month. We hope this interview will inspire you all to take action toward combating institutional and systemic racism, and to reconsider your experiences in the medical system through a sharp and discerning lens.

Takeaway

Transcript

Tanika Gray Valbrun The White Dress Project Uninvisible Pod Fibroids Women's Health Reproductive Health Medical Bias

Lauren: All right, guys. Thank you so much for joining us. I am here today with Tanika Gray Valbrun. Tanika is the founder of The White Dress Project, which is an organization that works to raise awareness of fibroids and other women's health issues. Tanika herself lives with fibroids. She's going to tell us all about it. Tanika, thank you so much for joining us today. 

Tanika: Thank you so much for having me, Lauren. I'm excited to chat with you. 

Lauren: It’s such a pleasure. And we're going to be releasing this episode during Fibroid Awareness Month as well, right? 

Tanika: Yes, which I'm so excited about. Because through the work of The White Dress Project, we are the authors of the legislation that went through the U.S. House. So we're always very proud of that accomplishment, because you can imagine anything going through the U.S. House and getting legislators involved can be tedious. But we're really excited about the fact that we were able to get that passed. 

Lauren: That’s amazing. Well, we're going to get into that. But let's start at the very beginning of the story. We'd love to know about your history. Can you tell us how you first realized that you had fibroids, and that you had these health issues, and what steps you've since taken to control your health?

Tanika: Yes, my journey started when I was a teenager, probably about 14 or 15. And ever since I started my period, they have always been seemingly heavy. I've always had really debilitating cramps. I've always had heavy bleeding, always had to go to the restroom, headaches.

So that's just what I thought periods were. I didn't have any concept of what heavy menstrual bleeding is, or that your pain shouldn't be this debilitating.

And so I felt like oh, I'm a woman, this is just how it goes down. And I just accepted it. What  is interesting, I think, about my story is that my mother had fibroids, and she explained to me some of the symptoms. I saw her go through losing a set of twins to fibroids. I saw her go through a hysterectomy. But when I was having my own symptoms, I don't know what happened, but it didn't click for us. Both of us were like, oh, it can't be fibroids. First of all, I was a teenager and they're not usually prominent during your teenage years. So it was just interesting to me that we didn't put that together. Those were some of my symptoms, and I really just dealt with them until I started to become anemic — which was around age 19 or so, and I had to have my first blood transfusion. 

Lauren: A blood transfusion because of anemia?

Tanika: Yes, because of low iron, and low iron contributed to the fact that I had fibroids. Or, because of the fibroids, I had anemia — low iron anemia. 

Lauren: Wow. Okay, and it sounds like, you said, that was your first blood transfusion. So there have been subsequent transfusions as well? 

Tanika: Yes, unfortunately, I've had seven blood transfusions because of anemia due to fibroids. 

Lauren: Wow. So these are totally interconnected conditions. And as you say, it is very interesting that you didn't sort of put things together early on. But I guess that's also part and parcel of being a teenager and running around and working, at school, and starting to live your life. And in many ways, I also wonder, with women's health issues in particular, how early on we become aware of some of this stuff, when we're not necessarily sexually active as well. Some of this stuff doesn't really hit us until a little bit later, too. 

Tanika: Yeah, absolutely. You're absolutely right. I look back, and in hindsight, I'm kind of like, Tanika, what was going on? Why didn't you know, why didn't you talk to Mom about it? But like you said, you're kind of just keeping life moving.

And if you have no barometer for what is considered normal, then you just feel like … this is my plight and my journey as a woman.

So I did exactly what you said, I kept it moving. I made sure that I always had pads with me. I always had a pair of leggings with me. My friends knew me as the girl that always had her backpack with her. If we went on a road trip, I was always the one who would need to stop at every rest stop because I had to pee. So that just became my life. Until I went to a doctor in my early 20s, and he recommended that I get a D&C. At that time, it was a very difficult conversation to have with my mom, because D&Cs are usually performed when you are scraping the uterus due to miscarriage or whatever else you need to clear the uterus for. So there's this awkward conversation of, "Were you pregnant? Are you having sex? What's going on?” It was none of those things. And at that point, I still wasn't diagnosed with fibroids.

Lauren: Wow. So the doctor knew to give you a D&C, but didn't even suggest looking further to see if maybe there was a reason for that?

Tanika: Right.

Lauren: It's like they just skipped to the procedure and didn't even ask you about your history or dig deeper for a diagnosis for you. Which is tantamount to malpractice, if you ask me.

Tanika: Exactly, I would agree. I guess I went to the doctor because of the heavy menstrual bleeding. So I think their reaction was just to treat that, and not look into anything further. 

Lauren: Which actually begs the question … is it less expensive within the medical system the way it is designed here in the States, which we’ll also get into … is it less expensive for a doctor to suggest a D&C than to actually work toward a diagnosis and future preventive measures? 

Tanika: Yeah. And I would argue that maybe it's particular doctors. And that's why we always advocate that choosing a doctor is such an individual process.

And it really has to be akin to dating. You’ve got to find the one.

And if one doctor is not the one, move on, sister, there are others. So that's why we always advocate for that, because it's such an important process along your journey — to make sure that you have that partner and help with you. 

Lauren: I really like that you use the word partner there. Because as you say, it is just like dating. It's that interview process. It's those few initial meetings to see if there's a spark. You're absolutely right. I'm actually curious to know as well, because of the connection with your mom. How old was your mom when she got diagnosed with fibroids for her to be aware enough of your symptoms?

Tanika: Yeah, that's a good question. I'm of Jamaican heritage; I was born in Jamaica. And obviously my mom is Jamaican. I feel like in our culture, you just didn't talk about it. So I feel like I can't even answer that question as to when my mother was diagnosed, but I know that she not only lost one set of twins, she lost two. So she lost four children due to complications with fibroids. And I came in the middle; I am an only child and I'm considered to be her miracle baby. And so it wasn't until I actually got my diagnosis, and it was like, “Oh, yeah, honey, like me, too. That's why I lost the twins …” you know, that sort of thing. That's a good question I need to ask her — when did she get diagnosed.

Lauren: Did you also know what fibroids were by the time you were diagnosed? It sounds like there was an awareness in your family. How was that topic broached? How did you learn about what they were? 

Tanika: That's a great question. I don't feel like I was as versed as I could have been, or should have been – knowing there was a history in my family. 

Lauren: You were a teenager. 

Tanika: Yeah, I was a teenager. And once again, it goes back to keeping it moving. My dad passed away when I was 13.

And I think my mom was just so concerned in making sure that she maintained a normal life for me.

The period stuff … like, “Honey, we'll deal with that later.” My dad died in our home. And you know, it was all about, "We need to move. I need to get you stable. I want you to have a great high school career." So I literally kept it moving. And that's why I always talk about in my story, how I really adapted my life to fibroids. Because I didn't have the opportunity to go to multiple doctors, seek opinions … I didn't have time for that, I had scholarship applications to fill out. You know what I mean? So, I think for a long time, I just kept it on the back burner. And what's interesting about my mom, is that instead of dealing with the diagnosis, per se, she just always taught me how to not have accidents, or how to protect myself. So that's what I know. I can't wear a tampon; I've never worn a tampon in my life. I know how to pad my underwear, like every corner perfectly. Tricks of the trade over here. And I think in hindsight I feel like if I were dealing with, “What's causing this? Mom, let’s talk about your experiences,” then it might have put me in a better position. But I was just always on the preventative.

Lauren: You were always on the go.

Tanika: And just trying to not have an accident. So that's why I'm so versed on, or keen on … all these years I have not worn white. You just become very keen on the things that you have taken out of your life or the accommodations you've made, because of fibroids.

Lauren: Absolutely. And for people who are tuning in who are going, okay, you're talking about fibroids … I sort of know what they are … but can you give people a little bit of a rundown of what fibroids are, so that they understand how serious a condition this is?

Tanika: Yeah, definitely. And when I do this … people always ask me … and I always preface: I am not a doctor. So please, everyone, make sure that you go to your doctor and make sure that you get an accurate diagnosis, and all that. But fibroids are benign tumors that can grow in and around the woman's uterus. And it's important to designate that they are benign. Because people hear tumor, and they get really nervous. But even though they are not cancerous, per se, they cause a host of issues. So for me, I have had all the bulk symptoms of heavy bleeding, pain — because they literally grow in your uterus and take up that space, very similar to where a baby grows. That's why there's often discussion around fertility and fibroids being connected, because they grow in the same place and there's some discussion around them feeding off estrogen. So they can grow at the same rate as a baby and that, in my mom's case, is what happened to her. They basically suffocated the babies, which is so sad. So yeah, those benign tumors can cause all of those bulk symptoms. It’s also important to realize that you can have fibroids and not have those symptoms. So it's important to make that distinction. But you can have the growths, you can still have heavy urination all the time, you can have back pain, and it really depends on the positioning of the fibroids. Where they are kind of determines the symptoms that you have.

Lauren: Absolutely. And over time, you also need to get these removed, don't you, because you can't be walking around with a growth that just keeps getting bigger and bigger, right? 

Tanika: Exactly. Many times, you'll see … even on some of our social media posts where we talk about women looking pregnant, because they grow in that same place in the uterus, and that's why you have those pregnant-like symptoms. It’s important to make sure that you recognize those symptoms in your body. And I always say, hindsight is 20/20.

But if I had known what I know now, I would have really started to journal more, to recognize what was happening in my body, take a look at the irregularities in my period, look at my diet more.

Because all of those things contribute to overall healthy lifestyle.

Lauren: Yeah, absolutely. And we were talking about your mom, sort of tied into this experience because she also is someone who has lived with fibroids. I wonder whether you leaned on her as an advocate? By the time you got your diagnosis, was she the person that you turned to for additional support?

Tanika: My mom is literally one of my best friends. Because she is an only child and I'm an only child. And then when my dad died, it was just the two of us. She is just my heartbeat. I talk to her every day, every other hour, that's our relationship. However, your mother can only speak from her experience. And I think most mothers just want better for their child. So I think what my mom did, instead of probably giving me the real real about fibroids, like I said, she was just, like, "Okay, so this is how you never embarrass yourself.” So it was always about this protection piece, as opposed to being a health advocate.

Lauren: So how did that affect your relationship either with her or with your own body growing up? What was that like?

Tanika: Yeah, I just … that's such a good question. I feel like, looking back at it now, it had to have impacted me. I feel like I didn't get those tools. And if I don't have them, then I'm now trying to play catch-up. And everybody has those moments where you feel like your parents could have instilled a little bit more in this area. But she was just concentrated on making sure that I was well-rounded — she played the role of both parents — and that I got a good education. So to her, this health stuff … I don't you know, she didn't want anything to happen to me. 

Lauren: No, but it's secondary to your education and your upbringing. I think that's pretty generally the case, especially when you're young and healthy, relatively speaking as well. And that's a tough one, isn't it, because it can be so fraught if you discover that you have a chronic illness. And so it's interesting, but it's very fortunate that you and your mom are so close. And it's nice that you guys have remained close throughout this journey as well. You've talked a lot about how you've spent a lot of time carrying your backpack, avoiding wearing white, always knowing where to pad your underwear out and stuff when you're bleeding. So what's a typical day like for you, when you're in the middle of a flare, when you've got active fibroids? How are you balancing the demands of work and life as you're managing your symptoms?

Tanika: That's a great question. I mean, it takes a lot. It takes a lot of planning. It takes a lot of patience.

It takes a lot of making sure that you're always showing up extra, just in case you have to call out sick the next day because you're in fetal position on the bathroom floor.

I was telling someone the other day that sometimes when I'm in board meetings, and I have my period, I’ll let everybody else walk out, and obviously people are, like, “Oh, come on, Tanika, let’s go to lunch.” Or, “What are you waiting for?" And I'll just sit down there at my computer because I'm not quite sure what's happening in my seat. You can imagine, that feeling alone can be daunting. In my office, I always have an extra pair of clothes. In my car, I always have an extra pair of clothes. So after a while, what does that do to your psyche? I used to think like, oh, Tanika, you’re being so dramatic, it’s not that serious. But starting this organization and hearing from other patients, and knowing that I'm not delusional, I really understand the psychological impact that it’s had on me. I look at every seat before I sit down. I often talk about, I've never bought a car with cloth seats. You know, it's those types of things that you just … 

Lauren: You’re thinking a step or two ahead. 

Tanika: Exactly, always, always. And that goes back to my mom. She always taught me that. And I think, too, as a woman, you just never talk about issues below the belt.

Lauren: You don’t. I am on the ‘let's talk about it brigade’! That's why we're here today. It's so fascinating to me, because when you get talking, as you know, from starting The White Dress Project … when you start talking to people, everyone comes with out of the woodwork with something.

Tanika: Oh, girl, yes. Everybody. And the thing with fibroids, I found that when I started talking about it, it was, like, “Oh, yeah, girl … my mom, my aunt, my cousin, my sister …

Lauren: Like sort of flippant.

Tanika: Exactly, exactly. And I thought that was so troubling. Because I’m, like, “No, if this were a guy thing, we'd have commercials and funding and legislation and billboards!” So I really am so adamant about women sharing those types of stories, because if you don't know that I'm sitting in the boardroom room waiting for you to leave because I don't know if I might have had an accident … People need to hear that this type of chronic condition has that type of impact. And if we aren't sharing those stories, then nobody knows what we're experiencing. 

Lauren: And you’re living in shame.

Tanika: Exactly. And that's where the shame and the stigma and taboo topic comes from.

Lauren: Yeah, absolutely. I mean, the more we talk about this stuff, hopefully the less taboo it becomes. So this is a step in the right direction for sure. I mean, it's interesting because you talked about when you meet other women who are dealing with the similar condition, it's a validation. That there are other people who are out there who are thinking the same way and having the same sort of experience with their bodies. I'm wondering, between that realization and experiences like you had with the doctor who offered you a D&C without thinking to diagnose you, have you been confronted and forced to justify the existence of your condition to people who couldn't see it, and didn't believe that it was happening?

Tanika: Yeah, absolutely. I wouldn't say so much because they couldn't see it. But because they didn't believe that it was as severe as I was making it out to be.

I definitely feel like I've had to justify to doctors how heavy my bleeding is, and how debilitating it is, and how I literally feel like I can't get up off the bed.

And them not understanding how serious that was. I remember after I got married, I went to a doctor to deal with my fibroids. And he did an examination, just a pelvic exam, no ultrasound or anything like that. And he said to me, “Just forget it. You probably won't be a mom.” I don't even like to repeat it. But, "You probably won’t be a mom, your uterus is way too compromised. You might as well just get a surrogate.” 

Lauren: And he just said that flippantly to you?

Tanika: Yes. 

Lauren: And a male doctor, too. Man.

Tanika: Yeah, exactly. And that was disturbing within itself because I had just gotten married, and what woman wants to hear that — whether you want children or not, you know. It was so devastating to me. And it was shortly after that, that I found the doctor who did my first surgery. But I feel like many times I have had to justify my pain. I have had to justify the amount I was bleeding. I have had doctors tell me, “How many times are you changing your pad?” Which I understand is a good marker for identifying heavy menstrual bleeding. But sometimes I felt like they were almost asking as if … you know, are you a germaphobe? Maybe you just don't like to see blood all the way on all the pad. So I feel like I've been in those situations.

Starting the organization and trying to explain the condition to male legislators has also been difficult. I've had many legislators tell me that I need to group fibroids with uterine cancer. 

Lauren: Excuse me! 

Tanika: Yes, yes. 

Lauren: Because they're scientists?! Do they know the uterus better? Wow!

Tanika: Right. And I think it's so telling of the ideology that if you're not dying from something, then maybe it just doesn't have as much weight. And I would argue that there are many women who have had myomectomies and have died from complications. Anytime you go into any type of surgery, there are risks. Any doctor will probably agree with me that having seven blood transfusions is not A-okay, either. So there are risks with any chronic disease, that I think more people need to recognize that these things can be debilitating. And let's not even talk about the financial impact. When you're thinking about, if a woman is bleeding that much, how many pads does she have to buy? How many tampons does she have to buy?

Lauren: Pink tax.

Tanika: Exactly, exactly. So, yes, to answer your question … yes, absolutely, I have had to justify what is happening. One more thing I want to say on that point is, I've always been pretty slim. And when I've had the protruding belly, it's always been like, “Oh, my goodness, you ate too much dinner!” It’s  always that …

Lauren: It’s written off.

Tanika: Exactly.

Lauren: And I'm wondering also, with some of these doctors who haven't taken you seriously, and these legislators, how much of that prejudice that you've encountered, how much of that misunderstanding that you've encountered, do you think was related to being a woman? And how much do you think it was related to being a woman of color? Because I'm wondering about how medical bias is affecting the care that you've received and the care of that many of the women who you've met through the organization have received as well. Because from what I understand, fibroids are a condition that affect women of color a little bit more frequently. I'm wondering about how treatment is then reflected back, given the fact that we know that there's inherent racism in the medical system.

Tanika: Yeah, absolutely. I'm so glad you brought that up.

Yeah, Black women are disproportionately affected with fibroids. Our fibroids grow larger. We're more symptomatic than white women. And our treatment options … we're often offered hysterectomy as a first option much more than white women.

In general, those are what the steps are.

Lauren: And again, it’s, let's jump to the hysterectomy because we're undervaluing Black lives. 

Tanika: Exactly.

Lauren: And immediately jumping to a solution that requires no longer-term care. It's the exact same thing that's happening with diabetes in this country, with so many other conditions that are affecting communities of color disproportionately as well, as you mentioned. And I want everyone who's listening to understand that this is not just a Black woman's problem. This is all of our problem as well. If this is a system that's reflecting back and affecting women of color in this way, then it's all of our problem.

Tanika: Exactly, and it is a health disparity for Black women in particular. And as it specifically relates to fibroids, Black women have been diagnosed at earlier ages, are more likely to be symptomatic, and are likely to have different responses to medical treatment.

Lauren: So that's also related to bias, but also gaps in our understanding in research. This is also racism in research because Black women aren't being studied as much. So we have no idea what the results are gonna be. 

Tanika: Exactly. And that is why I think at our organization, we are so adamant about making sure that at least the first step is that our stories are being told. Let's get our stories on the record, so that those anecdotes can be used for research. We need to participate in clinical trials, we need to speak up, we need to participate in studies. And I understand, most definitely, as a Black woman, historically … sometimes I say historically, and I’m, like, historically and present day …

Lauren: Not much has changed!

Tanika: Exactly. What our health disparities are and what the gaps are. So I understand that fear in participating. We can name them all … Tuskegee, Henrietta Lacks …

Lauren: J. Marion Sims testing on Black women.

Tanika: Right. But I also say that it is imperative that we are participatory in these studies and clinical trials. Because if we don't, then we're not counted; our stories aren't heard and treatment plans for us aren't developed. If 80% of Black women will have fibroids by the time they're 50, and let's just be clear, not all of them will be symptomatic … there's something to be said about that. If we are getting them at higher rates, they're larger, they're more symptomatic than white women, then there's something to be said about that.

I love the fact that you said this is something that affects all women because 70% of white women, as well, will have some type of fibroid by the time they’re 50.

Lauren: But that shouldn't change the fact that we should give a damn.

Tanika: Exactly.

Lauren: That's part of this discussion, too. Men should be listening and caring about this. It doesn’t matter who you are. If this is an issue that's affecting your fellow human beings, give a damn.

Tanika: Exactly, exactly. And that was bringing it back to the legislators. That's always been my response to them … “Oh, okay, so we’ll deal with that when your sister and your mom and your wife … ” Once you phrase it like that, it's almost, like, “Okay, so what's the statistic again?” All of a sudden, they become interested.

Lauren: But how many times do you also have to learn how to speak their language? When are they going to learn how to speak women’s language? That's the interesting power dynamic there, too, isn't it. Because it's the prevailing narrative of old white man.

Tanika: Exactly. So that's why … not to get too far off topic, but we gotta vote, we gotta run, we’ve gotta support people … who are women, who can understand. And I also think that it's not that they can't understand, they're just not invested in understanding. That's why, at the level that we are at, what we're doing is making sure that our stories are getting out there. Because literally that is the first step. I remember speaking at the Georgia House early last year, and after I spoke, the legislator came up to me and he said, “You were so powerful, and that was so dynamic, and anything that I can do so that my granddaughter doesn't have to go through this, let’s make it happen.” So forget about my story, seven blood transfusions, he rightly was, like, yeah, all of that is great …

Lauren: This is a big deal.

Tanika: Exactly. And I don't want my granddaughter to go through it. I understand that too. So however we have to make the story relatable is fine with me. If that's the biggest hurdle we have to go through that allows them to comprehend the issue that we are dealing with, then I'm fine with that. I just want them to listen, and I want them to care and not feel like this has to be grouped …

Lauren: … with an unrelated condition. Well, you don't want it to be grouped with an unrelated condition, but also one that is far more deadly, considering the statistics. Where this is something that can be treated over time.

Tanika: Exactly. And I shouldn't have to rank my conditions. I shouldn't have to be competing with someone who has … and obviously, neither of us are saying that cancer patients aren't going through their own …

Lauren: No, no. no. We’re not saying it's not important. We're just saying this is different. 

Tanika: Exactly, exactly.

Lauren: Cancer is one of those interesting ones, too, because it's something that's so universally well funded, well known, well understood, on some levels. And it's often a point of comparison when we're talking about other conditions. And that's the whole point why this podcast exists. Obviously, we have cancer patients on the show, too. But we're looking at these other conditions that have heretofore been far less funded, far less popular in popular discourse. So these stories are getting lost. And that’s exactly why we need to, as you say, keep telling these stories, keep collecting these stories, so that people can hear these first-hand accounts and understand the gravity of these situations. 

Tanika: Absolutely, absolutely. And that's what we strive to do at The White Dress Project.

And I think even with dealing with getting people to listen, there's also a hurdle that we have to cross as women and getting the courage, strength, whatever you want to call it, to share our stories.

There are so many fibroid groups that are out there; I guess they call themselves support groups, they’re are not necessarily patient advocacy like we are. But thousands of women. And I'll go in them and I'll say, “Hey, this is what we're doing.” And I'll get so many DMs, like, “Oh, is this a private page? I can DM you my story. And you know, you and I can be friends. But, you know, I don't want to put it out there publicly.” I feel like anything that is 80% of anything, is a lot of women.

Lauren: But it’s because it's below the belt, right? There’s taboo associated with that, and people don't want people to know, like it's a private matter. And look, for some people. having their close friends and loved ones know the story is enough. For some people, not telling their story is their way of dealing with it. But as you say, the way we're going to effect change is to bring the wave of stories, the 80%, out of the woodwork, so that people understand the the breadth of this situation, too.

Tanika: Exactly. I’m definitely not knocking privacy. I completely get that. I think my point is that we have to understand that the stigma needs to be removed from this. And I have found that through sharing my story, I've really gotten to my healing. I'm still on my journey with fibroids. I'm still currently living with fibroids, even after two myomectomies. And I'm still on my fertility journey, even after going through two IVF cycles. So this is like real life for me every day. To your point … no, we're not knocking privacy and we're not knocking however you get supported. But I just want to put out there that it's so important to share, because it definitely is connected to your healing. And it often supports so many other women. 

Lauren: Yes. Thank you for saying that. I think that's so true. I want to get back into your advocacy work in a minute, but I want to stay on health care while we're on it. Because given your experience, what we're talking about, we're talking about racism and bias in the system. In what ways are you seeing the healthcare system that we have here in the U.S. working for fibroid patients? And aside from what we've discussed about gaps in research and particular practitioners maybe not being the right fit, in what ways is the healthcare system that we've designed here in the U.S. not working for patients? What are the pluses and minuses of the system as a whole right now … bullet points from your point-of-view.

Tanika: I'm not sure, Lauren, that I have a lot of bullet points that I can say are positive.

Lauren: Then go into detail! Who cares about the positives, honestly. This is the interesting thing; part of the reason I asked that question is that some people have nothing good to say because they’ve had bad experiences. And I think that's important, to reflect on your story. So, please share what feels necessary.

Tanika: Yeah, I'm definitely not a healthcare basher or anything like that. I just think we have a lot of work to do in that area.

We've already spoken about the disparities, and we talk about them, we list the statistics — and then everybody kind of goes radio silent.

There’s nothing to be said after that. So we have to deal with the disparities, we have to deal with the gaps. And I think that an important thing that we need to do … that I don't know if some people would even categorize as a negative in the health care arena … but I really feel like we need to redefine what the patient/doctor relationship is like.

Lauren: Yes, the power dynamic.

Tanika: Yeah, this idea that the white coat is angelic? I get it. I didn't go to medical school, and I respect every doctor that does and every doctor who goes into it to truly help people. But this idea that I don't want to seek a second opinion because I may get my doctor upset … I just don't get those types of ideologies, and I want us to dismiss them. We can't tell people what to do, but I want you to do that one.

Lauren: Well, it's the idea of shifting the power dynamic from us working for the system, to the system working for us.

Tanika: Working for us, absolutely! And I feel like, as I said earlier, if we become partners with our doctors, then we understand that, ‘Okay, I've gotten this diagnosis, this is what you are able to do. This is what you studied, this is what you have your certification for. But that's not the route I want to go.’ So then what are you going to do? That's why we also promote at The White Dress Project being your own best health advocate. At the end of the day, nobody is going to care like you care. No one knows the intricacies of your body like you do. So once we go into partnership with our doctors, then it doesn't become this allegiance, we can't let go … “Well, they said I needed surgery.” But there are always other options and availabilities. And granted, sometimes surgery is the best option. But the idea is that you become a participant, you become a partner, you become completely invested in how this whole thing is going to go down. The doctor I told you about previously who told me, “Just forget about it, go ahead and figure out how you're going to pay for a surrogate”, what I realized about him is that he was a visiting doctor to the hospital where I was at the doctor's appointment. He was from a rural part of Georgia. And in his defense, he had just never seen a uterus my size. He had never heard of this type of bleeding. So I have to be abnormal. I have to be the rare patient. So he spoke to what he knew. And that's the thing that we try to tell patients all the time. Doctors sometimes only speak to what they can do, because they don't want to lose you … good doctors won't say this, but they don't want to lose you, they don't want you to go anywhere else, just get on their schedule and get it done. We could talk about some other negative things — bias, unconscious bias. Yesterday, I was talking with one of my board members, and I told her that at this point in my health journey, I really only seek out Black female doctors.

Lauren: Fair enough.

Tanika: Yeah, and that's because it's been my experience.

White males just have not worked for me. White female doctors just have not worked for me.

I haven't been able to build a relationship. I haven't been able to feel like they get me/I get them. So at this point in my health journey, that's what I want. I want a Black female OB/GYN. And like I said, I was talking to my board member and she talked about the fact that she's had issues or felt like her Black female doctor was very condescending. And she's a Black woman. So we have all these types of bias, unconscious bias. That's why choosing a doctor is such an individual experience.

Lauren: But I think that's also about giving women permission to seek caregivers who look like them in the mirror, who understand their experiences. Absolutely. Because they're representative of those experiences, too.

Tanika: Exactly, exactly. So if 80% of Black women will have some type of fibroid by the time they're 50, and you are a Black woman, chances are, you might be one of them, sister, you know what I mean?

Lauren: Or you know them; you know people who have that going on.

Tanika: Exactly. So like I said, it has worked for me and I go into all of my doctors with my journal, with my medical records. This is not just something you get to keep in a file folder. No, this is my life! I have all my medical records in my file folder in my office. So I go to them, like, “Oh, okay, so when they measured them last time, here's what was going on. So I'm not quite sure how you got this.” That's the conversation that we have. And like I always say, it is not to disrespect any doctor. It is not to not respect their level of education, pedigree, all of that. That's all good and well, but I’ve got to do it for me. I got to take care of me.

Lauren: Yes. You're the CEO of you.

Tanika:  I am the CEO of me! I love that! I am the CEO of me, and I know that there are a lot of doctors, especially the ones on our advisory council, that talk about that all the time. And they say, “I love it when patients are like, go get a second opinion.” 

Lauren: Because they're good doctors.

Tanika: They’re good doctors. But the sad reality is that, like anything else, there are those doctors who will not show that level of care. And you’ve just got to keep it moving. Like we said earlier, she’s not the one.

Lauren: Yeah, absolutely. But I really like that you take that approach … in terms of finding a caregiver, you're looking for someone who can understand your experience. You’re looking for someone who won't have the same kind of inherent biases that so many other practitioners might. And you're looking for someone who is also someone you get along with, that you have sort of a rapport with. So, let's dig into more of the work you're doing and what you've just had passed through Congress. Talk to me about The White Dress Project, about all of the initiatives that you guys are working toward to continue creating awareness around these conditions.

Tanika: Yeah, we're so excited because our board is made up of women who are all patients. One of our board members just had her second myomectomy three weeks ago. So we are in this work every day, this is not something that is behind us. We are constantly checking in on each other about new doctors, what did the doctor tell you. 

We’re truly a family and a group of women who really want to support women, because we understand what it’s like to suffer in silence and feel alone…

...and feel like you have to still show up every day, and nobody understands when you don’t show up. So that’s what we’ve tried to create; that’s the environment we've tried to create at The White Dress Project. We've really tried to allow women to understand that you don't have to suffer in silence. You need to be your own best health advocate, and your story leads to your healing. Because I work in the media, I understand how important it is getting in front of legislators to try and get funding and advocacy work done. So one of the first things we did was write legislation to get July declared as Fibroid Awareness Month.

Lauren: Yay! This is national? I love that!

Tanika: Yes. Through the U.S. House. We're so excited about that. And we're working with other organizations like Black Women's Health Imperative to get education, and research legislation, because that's a part of the gap that we talked about earlier. So why are Black women being offered hysterectomies more? What is happening? What is the conversation? 

Lauren: How do we keep calling that out. How do we keep calling the BS out.

Tanika:  Exactly, calling the BS out. So that's our legislative side. And we have gotten a lot of traction on that. We've gotten a lot of conversations going. And like I alluded to earlier, some tough conversations, where we don't feel like we have to justify why appropriations should be there for fibroids. And why NIH or the Office of Women's Health should have more research, other than the generic definitions. Why can't we have campaigns? Why aren't their initiatives? Why aren't more people talking? So that's what we do in our little corner of the world. We try to make sure that that is happening and it's happening often.

Lauren: I love that. And I'm so excited about July being National Fibroid Awareness Month. I mean, this is a really big deal. And I also love that you're working with Black Women's Health Imperative. What an amazing organization as well. What great partnerships. It's amazing what happens when women come together, isn’t it.

Tanika: Absolutely. We change the world when we come together.

Lauren: So true. And I'm so excited to watch what you guys continue to build together. So, we're sort of slidin’ into the end here of our interview.

Tanika: Aww.

Lauren: I know, I'm having so much fun talking to you! But I like to wrap up with a couple of Top Three lists. And to start I wanted to ask you what your top three tips are for someone … maybe they suspect something's off with their period. Maybe they already have a diagnosis of fibroids. What would you recommend for someone who's living that fibroid life, like you are?

Tanika: I would recommend a couple of things. I feel I'm such an advocate for therapy …

Lauren: Yes! Thank you for saying that first. In order of importance, this is a very important one!

Tanika: Exactly.

If you hear nothing else that I say, please know that I am an advocate for therapy. I feel like the mental health component plays such a big role in how all of this goes down, and how we deal with it.

I remember there was a very low point I had gotten into after my first IVF cycle failed, and it was, like, “Well, maybe it's because of your first fibroid surgery … inflammation and scarring and all of that.” And you just become mad … like, what are these things in my body that's causing all this havoc?

Lauren: Yeah, I didn't order this. This is defective.

Tanika: Yeah, exactly. That nobody really cares about that. What is all of this? And you tend to feel like you almost don't have control of your body. And that became very debilitating to me. Once I started to get to that point where I realized I was constantly being sad or mad, or just low about what I felt like my body was doing to me, I realized that I needed to get help. I'm super social. I'm girly girl. I'm the girl that goes to everybody's brunches, right? And when I realized that I no longer wanted to do that, I realized … because I felt like, I don't know … if I go out, who knows what will happen. That was very important to me to make sure that I got a hold of that because I didn't want it to get any worse. And I understood that this is out of your control, there's nothing you can do about it, per se. This is just your journey in life. But then you go to the other side, like: Why? Why does this have to be? So yeah, I say all of that to say that I got to that point, I realized I had to do something about it, and I did something about it. And it has really been a pivotal changing moment in my life. And has allowed me to deal with this. The second thing I will say is, I started this organization because I wanted somebody like me. I wanted somebody to be, like, “You go, girl, you can do this.” I know what it's like to feel like you've got to bring 50 pads with you on a date. I get it when you feel like you can't even spend the night at his house because you don't know. I wanted me, and when I didn't see it, I created it. And I'm not telling everybody that they have to go and start an organization. But sometimes when I scroll Instagram, and I see all the patient advocates … I just met this young lady called Splash of Lyme.

Lauren: Oh, yeah!

Tanika: Courtney, yeah. She has Lyme disease. And I just love it when patients feel empowered to share that story. So I'm not suggesting that you have to start a nonprofit, because it's a lot of work! However, I do suggest finding your tribe. Finding the group that will lift you up, that will support you and truly understands what you're going through. And not people who will just give you lip service. The third thing dealing with fibroids, I would say, is finding a good health team. And these people work for me, right? 

Lauren: Yes!

Tanika: They work for me, honey. So I have my therapist, and then I have my OB/GYN, and then I have my dietician, and then I have my general practitioner … you all work for me, so, what's going on?

Lauren: Be that CEO!

Tanika: Exactly. What's the plan? What are we doing, and how are we working in tandem. I go to an acupuncturist. There's this whole conversation about diet and nutrition and acupuncture, and that holistic world.

Lauren: You’re combining the integrative and the traditional Western; you're really doing complementary therapies there.

Tanika: Exactly. And for me, that has proven beneficial. For a long, long time, I really didn't believe that that was how things were done. Because my doctor never told me about acupuncture. But once again, it goes back to that idea that you have to seek things out for yourself. And now when I go in and ask, they’re, like, "Oh, yeah, acupuncture is great!”

Lauren: And it's like the oldest form of medicine as well!  Why aren't we talking about this more? 

Tanika: Exactly, exactly.

So creating that medical board of directors who work for you and who are invested in making sure that your health journey is what you want it to be.

And that depends on whether you want a family; whether you don't want a family. Whether you want your parts or not. It's all up to you, and nobody can determine for you what you desire. 

Lauren: But that's an important note, actually, especially for Black women who are tuning into this episode. Because if you have fibroids and you've only been offered a hysterectomy, maybe go get a second opinion, right?

Tanika: Yes, not even maybe, girl. Run!

Lauren:  Because is a hysterectomy even a cure, as well? Can you still develop fibroids, even if you have your uterus removed?

Tanika: So the idea is that once your uterus is removed, most likely they will not come back because that is the area where they grow. So if you remove the area …

Lauren: But endometriosis … some of these conditions, they're so insidious, and you still might get growths. None of these are a 100% cure. So you might as well do management strategies instead.

Tanika:  Exactly. And the thing is, even with a hysterectomy, there are other things that are coming with that. We have someone on our board who's had a hysterectomy. And there are a host of other things that come with that.

Lauren: That’s a lifetime of balancing your hormones and dealing with the fallout from that.

Tanika: Exactly. So yeah, your personal medical board of directors is so important. Therapy is so important. Finding your tribe is so important. And the last thing I'll say is … kind of going to the climate where we are… We really all have to do the internal work, right? We have to do the internal work to eliminate our bias.

We have to do the internal work, to allow ourselves to feel worthy. To know that we should be our own best health advocate. Sometimes I'm kind of like, why do we have to shout that from the mountaintops?

But it's because all of us aren't there yet. And that's okay because I'm here to say it. But I want us to understand our worth in that way. I want us to understand that, no, this has to be a partnership because this is my body. And you have the medical knowledge; I get it. But I live with me every day. And I think that we’ve just got to get there. And so that's the last thing I'll say. Those are my top four.

Lauren: Do the work. 

Tanika: Do the work, yeah. In every aspect, right? And I think right now, there's a point where people are saying, reach out. But you’ve got to want to reach out; you have to want to do this type of internal work first before you can impact anyone. And I feel like, for me, starting this organization was a part of that, because I recognized that I didn't want to share and I just learned how to protect myself — but not really how to be an advocate for myself. And once I realized that that was the issue, that gave me the courage and the impetus to start the organization. Because I realized that I really had to do it for me; I really had to do for my healing. And once you get to that place, it's like a game-changer. I feel like my therapist would be very proud of me right now!

Lauren:  I know! I was, like, this is all very good emotional work that you've done, clearing those cobwebs, right? It's so much to do with where you're at mentally with this stuff. And I like that you're sort of wrapping up there with doing the work. Because doing the work isn't just about supporting Black women with fibroids. That's an actionable step you can take today if you want to go and support an organization that supports Black women. You can go and look up The White Dress Project, and we're going to share contact information at the end of this interview. But it's also, as you say, about continuing to do the work. I mean, this is something that, here I am, the white host of a show where I feel the need to represent a very broad range of voices that actually represent what chronic illness looks like. Because it affects more than just white people, who, by the way are the most willing to tell their stories. So it is about making it okay for everyone to tell their story, and being open to hearing these other stories and being open to these other experiences of the world — because your experience isn't the only one.

Tanika: Absolutely. And I really must say that I'm grateful for people who understand that, like yourself.

Lauren: Look, it's a constant work in progress.

Tanika: Yeah! And that’s the thing, Lauren, we all are, right? But once we acknowledge it, that is the part of getting to a better place — the acknowledgment of it. So I definitely am grateful and thankful for the opportunity to chat with you. And you having a genuine concern and a genuine interest in my story, and the story of other women who are like me So I just applaud the work that you're doing.

Lauren: I applaud the work that you're doing. We can have a mutual appreciation applaud!  I mean, it's so important. And I've got one more question to ask you, because this is sort of a fun one — since we've now decided that we're going to brunch when I meet you in person one of these days! This is another Top Three List … top three things that give you unbridled joy. So let's get into the joy as we wrap things up, I want to know things that you're totally unwilling to compromise on. This can be guilty pleasures, secret indulgences, it can be comfort activities if you're in a flare. What are the top three things in your life that set you on fire, that light you up?

Tanika: Yeah! So this sort of thing lights me up. I get so excited about the opportunity to share my story, and to hear other people's story. Now I'm a journalist by trade, so I guess it's always kind of been in me. I've known I wanted to be a journalist since I was seven years old. While everybody was, like, “I want to be a doctor!” “I want to be a lawyer!”, I was, like, “Well, I'll interview you!” I guess I just am really attracted to storytelling and sharing my story and hearing the stories of others, and really getting to what makes people tick. I guess that's why I like to converse with my girlfriends and go out, because I feel like that is where you have the opportunity to really connect with people and see what they're made of. So that, honestly, as corny as that sounds …

Lauren: No, I don't think that's corny, because it makes me tick in the same way. I get it!

Tanika: So, another thing when I'm in a flare moment, really feeling down, reality TV is … (laughs)

Lauren: Trash television. There’s nothing like it. 

Tanika: Oh my God, it’s my guilty pleasure. My husband will be so mad at me. He's always, like, “Babe, what are you feeding your mind?”

Lauren: Trash! But it is part of story, isn't it? Sometimes you need to see another story, and let it get ridiculous to put your own in perspective. 

Tanika: Oh Lauren, I'm about to use that all the time! 

Lauren: That’s a great way to justify watching trashy reality TV. (laughs)

Tanika: Absolutely! I love it! What else gives me joy? I absolutely love to travel in groups. Traveling is a big thing for me. I love to go with my husband. But I also like to just get like a group of friends together.

This past weekend, we just got back from camping. And it was so good, because Corona has just shut the world down.

So for travelers like me, I'm just, like, “When are we going to get to travel??”

Lauren: You can just use a virtual background on Zoom. That'll take you to the beach. 

Tanika: Well, there's that. So yeah, I love to travel. And we got to go camping this weekend, so just getting out and bein’ with nature and just hanging out — it was the best. So yeah, those are my top three. And oh, I love to shop.

Lauren: You’re a girl after my own heart!

Tanika: Yes, I'm a shopper, honey!

Lauren: Brunch. Shop. Maybe I won't come for the camping, but I will brunch and shop with you.

Tanika: Yeah, I was thinking like, I'm so not a camper. But I was a Girl Scout, so I feel like it was kind of in me. I'm such a girly girl, and I was, like, I don't know, camping as an adult …? But we had the best time.

Lauren: That’s awesome. That’s really great. And look, maybe this time you didn't have to bring a backpack full of pads?

Tanika: Well, I did, and it's so crazy that you say that because I thought about it the whole way — because you're coming on a camping trip. It was only a couple of days, so you don't want to overpack. You don't want to walk in and you're the girl with three bags. It's so interesting that you say that because I did come with it.

Lauren: But that's because you've also done the work to remove the shame for yourself in a lot of ways, too.

Tanika: Right. But like you said earlier, it’s still a work in progress. Because I still thought about it, and I still made sure that I brought my non-transparent backpack.

I’m fibroid girl, and I'm patient advocate, rah, rah, rah. But then I still have those moments…

Lauren: You’re still human. 

Tanika: Yeah, absolutely. I remember when I was starting the organization, my mom was so proud of me. But she said, “Well, honey, don't tell everybody that you had 27 fibroids removed.” And I remember being, like, "But why? Because it's true.” I'm not sure what she said, but that stigma is still there. And I still think of her every time I write a post that has period or blood or pad in it. I'm like, let me block her from this post!

Lauren: Anyone but close friends!

Tanika: Anyone but Mommy! So I still have those moments, is what I'm trying to say.

Lauren: Yeah. And I think that's the point here, that it's okay to falter. It's okay to be imperfect. All of this is a work in progress. And if anyone takes anything away today, it's that. But also support Black women. Support Black women who have fibroids. Support your community. Support people. Be human.

Tanika: Be human. Be kind. Absolutely.

Lauren: Now tell everyone where they can find The White Dress Project.

Tanika: Yes, yes. So, on Facebook we are The White Dress Project. On Instagram we are @WeCanWearWhite. And on Twitter, we are @WeCan_WearWhite. And our website is TheWhiteDressProject.org.

Lauren: Perfect, and we'll link to all of this on the webpage for the episode. So guys, log on to UnInvisiblePod.com and check out the latest episode for details there as well and links. Tanika, it's been such an honor speaking to you. What a joy, what a pleasure.

Tanika: Thank you so much. Just one last thing I want to say: July is Fibroid Awareness Month. We'll have a whole campaign on it, so you can see it on any of our social media channels; we’ll be rolling that out pretty soon. So just stay connected with us and support us and we'll be eternally grateful.

Lauren: I love it. Thank you so much, Tanika.

Tanika: Thank you, Lauren. Talk soon.

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