Nkem Osian is a Public Health Analyst at the United States Department of Health and Human Services, where she analyzes and monitors Ryan White HIV/AIDS Programs in Los Angeles County. In this role, she ensures the uninsured, underinsured, and vulnerable individuals with HIV have access to optimal, life-saving treatment and care. In addition, Nkem is a patient advocate and member of the board of The White Dress Project (WDP), an organization focused on raising national awareness about the uterine fibroid epidemic and in filling the gaps in care, education, and research in the field. She herself lives with uterine fibroids, and shares her story to help break down the walls of silence that surround this common — and commonly unknown — gynecological condition.
Tune in as Nkem shares:
- that she was first diagnosed with uterine fibroids in 2015 because of excessive bleeding and clots
- that she normalized her body’s gynecological dysfunction until she was entirely unable to function at all
- that she developed cardiomegaly (enlarged heart) to compensate for the lack of blood in her body caused by uterine fibroids
- that she has yet to have fibroid surgery because of (not unreasonable) fears about the process
- that she has been prescribed various forms of birth control to manage her bleeding
- that BC is masking her symptoms and not treating the root cause, but she’s been working through her own fears about fibroid surgery
- her concerns about fertility in relation to the presence of her fibroids
- that she didn’t know how to effectively advocate for herself until she became a member of The White Dress Project
- that she felt immense shame about her diagnosis until she made a friend who showed compassion and encouraged her to seek further care (and yes, people who work at HHS can indeed feel timid about their own health!)
- that based on her research, individuals living with HIV are more likely to be victims of intimate partner violence (IPV)…and those living with intimate partner violence are more likely to contract HIV
- the importance of community in patient advocacy — and how this work can strengthen our humanity
- how collective action can make a difference
- how fibroids have affected her relationships and experiences
- from whence she draws her strength
- why your relationship with your healthcare providers should be a partnership in your care
Lauren: All right, guys, thank you so much for joining us. I am here today with Nkem Osian. Nkem is a public health analyst for the US Department of Health and Human Services. She's also a board member at The White Dress Project. You guys might remember that because we had their founder Tanika on the show recently. Nkem also lives with fibroids. So lots to discuss here. We're going to jump into it. Nkem, thank you so much for joining us.
Nkem: Thank you for having me, Lauren.
Lauren: It’s an absolute pleasure. So you know, we like to start at the beginning of the story here, and I would love to jump into your fibroid journey. How did you first realize that you had fibroids and how have you kept your health under control since the diagnosis?
Nkem: So I was first diagnosed with fibroids in 2015. At the time, it seemed like my period just changed so drastically. I was literally changing my pads every 30 minutes, I would clot so much; the clots would be so big, I felt like clots were just pouring out of me like all the time. It was painful. My periods lasted two weeks or more. I would bleed in between periods. At the time I was working in New York, but living in New Jersey, so I would commute by train or bus and have so many accidents on the train, on the commute to work or the commute from work. And I just never expected … blood just gushing down. I don't mean to get so graphic!
Lauren: But I mean, this is the reality of life with fibroids!
Nkem: Right, and I remember this one time vividly … thank God I was wearing black. I was on the train, and I just felt a pressure in my abdomen; it was really tight. Apparently, a whole bunch of clots were getting ready to come out, which is why that happened. And it just gushed out. The blood was literally tripping down my leg and I was thanking God that I wore pants; that I wasn't wearing white; I was wearing black. Because it was so embarrassing.
And even at work, I would stain my clothes, stain the chair. It was humiliating. And I felt so ashamed.
So, just to backtrack a little bit … at the time, I didn't even think anything was wrong, to be honest with you. I kind of just normalized it in my own head. And I said to myself, I'm a woman, women always go through changes in their body. This is me just going through that change. It's normal. But it got to a point where I couldn't take two or three steps without feeling like I was going to pass out. Every step was a struggle.
Lauren: So you had brushed your own symptoms aside until you couldn't function anymore.
Nkem: Right, But Lauren, even at that point when I felt like I couldn't function, I still didn't go to the doctor. It was at the urging of my sister, who's a doctor; she noticed that the inside of my eyes were really pale. The inside of my mouth was really pale, and the palms of my hand were really pale. So she said, “No, you look white.”
Lauren: You were losing too much blood, too much iron.
Nkem: Exactly. So she said, "You need to go to the doctor, like right now. Make an appointment, get the blood work done.” So I did that, got the blood work done. My doctor called me; she said, “You need to go to the emergency room right now because your hemoglobin, which is your blood level, is fatally low. It's a 3.” A normal hemoglobin level for a woman is between 12 to 15, and I was a 3. So I went to the emergency room, they ran a host of tests, of course. They also ran an echocardiogram on my heart because I had this cough that wouldn't go away. They found out that I had developed something called cardiomegaly, which is an enlarged heart. The reason my heart was enlarged was because my heart was working in overdrive to compensate for the lack of blood in my body. It was horrible. I needed a blood transfusion. They said, “We're nervous that if you walk out of these hospital doors without getting one, you can go into cardiac arrest at any moment. So you need a blood transfusion."
Lauren: They didn’t mess around with you at all.
Nkem: They basically said, your hemoglobin level is not conducive to life. Those are the words they used … “not conducive to life.”
Lauren: That’s scary.
Nkem: Yeah. So I got the blood transfusion. And of course, they attributed all of this, at the time, to one large fibroid that was on the surface of my uterus. And at the time, like I said, I was living in New Jersey, so this was at a New Jersey hospital. And the doctor said, “Because it's in the best location, and because you only have one, I don't want to perform the surgery on you. Instead, my immediate concern is managing your bleeding, because we don't want you to continue to bleed out profusely like you've been bleeding for the past several months.”
Lauren: But if that's a root cause concern, surely removing the fibroid would prevent all the bleeding, no?
Nkem: Right, it would. But honestly, Lauren, in retrospect, I was kind of happy with that. I'm a different kind of patient.
I was kind of happy with that — only because I was scared to have surgery.
Lauren: And I guess the idea also, when your hemoglobin is that low … the idea of surgery is, like, can you actually survive surgery safely?
Nkem: Yeah, at that level, no.
Lauren: It’s microscopic. Yeah, that is really scary. Okay, so you opted not to have the surgery. So what happened next?
Nkem: They just put me on birth control. Initially they put me on the oral contraceptive to manage the bleeding.
That worked for about a year or so, until it stopped working.
So they switched the birth control to the Depo-Provera shot, which I've been on since 2017. And I'm still on it. I was only supposed to be on it for two years. But the amount of relief that it is giving me … I can't see myself not being on it. It's bad because it doesn't treat the root cause of the issue. It's just masking it; it’s masking the symptoms. It's not treating the root cause. But I am very fearful. I'm very fearful about getting surgery. I'm very fearful about what that looks like for me. But I know it's a decision I ultimately have to make, because I know I cannot be on this Depo shot for too much longer. Because of the long-term side-effects.
Lauren: Yeah. Well, depending on what your plans are, if you are planning to have children or start a family. I mean, that is also a concern. So have you been monitoring the growth of the fibroids since then with regular ultrasounds?
Nkem: Yeah, and I'll tell you, those fibroids grew. I grew many more fibroids. So it's turned from being just one big fibroid on the surface of my uterus, to having fibroids all over my uterus in different locations, different sizes. And I think that was another concern that I had with the surgery, too, because I was fearful that if I did have the surgery, there's a 50% chance that they might grow back. So I don't want to keep having surgery, perpetual surgery. Like you said, I do want to have kids, I desire to have kids. And constantly having surgery to remove fibroids can compromise that for me. So I think that was part of my fear in having the surgery done.
Lauren: I wonder along the journey … and we're going to talk more about The White Dress Project because it's interesting, when you are wearing black and bleeding versus wearing white … that's the whole reason it's called The White Dress Project is that you can bleed and you can wear your white. But I'm curious to know how you got connected to The White Dress Project and whether that's also influenced now meeting other women who are living with the same condition. Whether that's also influenced your future plans and desires to get surgery, and maybe giving you a little more confidence in surgery, too.
Nkem: Like I said, I started this journey in New Jersey. I moved to Maryland in 2017, about two years into my fibroid journey. I felt so alone at that point, because at least when I was in New Jersey, I was with family — I was living with my mom, dad, and my little sister. But when I was in Maryland, I was by myself, so I was in search of support, community — because I did feel so, so very alone.
And in my search, I stumbled across The White Dress Project. And I thought, this looks interesting.
So I read what the mission was all about, and I was, like, this is amazing. This is something that I need. I was initially searching for support. And I reached out to the DC, Maryland, Virginia chapter of it. And they got back to me; we had conversations about me being involved in it. The rest is history. And it has definitely helped me in terms of creating a sisterhood … one, among women with shared experiences. I feel like we're all united with those shared experiences, shared vision, shared mission, shared hope. And, two, I know being a part of this organization has definitely helped me become more confident in the next steps to having surgery, because every single person on board has had at least one surgery because of fibroids. I'm the only one that has never had surgery to remove them. The only one.
Lauren: Wow, that's really interesting. You mentioned the sisterhood, obviously, through The White Dress Project, and also your family when you were still living in New Jersey. Did you find, throughout this journey, that you really needed an advocate in terms of finding health and getting healthy? And who is that for you? And how has that changed or impacted your relationship with them?
Nkem: It's a couple of people, actually. From the very beginning of my journey, I definitely realized that I needed a personal advocate. When I was first diagnosed with fibroids, I I didn't know much about the condition. And that lack of knowledge made me a bit fearful. I didn't know how to effectively advocate for myself. My mother actually also struggled with fibroids, but she never really discussed it with me until I was diagnosed with it.
Lauren: Why would that be? Is there a reason she withheld?
Nkem: You know, I think it's partly because I was so young when she was first diagnosed, when she was going through it.
Lauren: It’s hard enough to understand a period, let alone fibroids, right!
Nkem: Yeah, and I think it's because it's been normalized so much. ‘All women have fibroids, you'll be fine.’
Lauren: Actually, that's not the prevailing wisdom. The prevailing wisdom is that a lot of people don't even know about fibroids, and yet 80% of Black women and 70% of white women are going to develop them by the time they're 50, right?
Nkem: I know, I know. And I feel like a lot of women develop them.
But I also feel like you probably don't know about it, unless you've experienced it.
Or have known somebody who's experienced it.
Lauren: Or unless they're severe enough that they're actually causing issues, because some people have them and are asymptomatic.
Nkem: Right, exactly. And some women find out that they have them when they're pregnant sometimes …
Lauren: Or though routine procedures, right. Really interesting. So you and your mom didn't really talk about it. But your sister was obviously on top of your health as a doctor, you mentioned. What about the other people in your life who you were able to talk to about it and lean on in terms of having an advocate?
Nkem: It's funny, I have this close friend that I developed a friendship with because we worked together when I was in New York — that I told you about. I started working there before her. And before she started working there, I felt alone in that job. And I felt ashamed, because I was always staining, everywhere. And I was, like, oh my gosh, I don't know who to talk to. I had this mindset that people were looking at me, like, how many years has she been having her period and she's still bleeding through stuff? I just felt so ashamed, and I couldn't talk to anyone until my friend Alma came along and I was able to confide in her. The first time I told her, we were going to lunch and it was right around the corner and I couldn't walk, Lauren. I could not walk.
Lauren: It’s fascinating to me that you literally work in public health. You work at the Department of Health and Human Services, and yet there was still shame associated with this condition, or at least the symptoms of the condition. And I think this is sort of part-and-parcel of being a woman in the world, that here you are having a pretty typical female experience … but there's shame around it. It's kind of mind blowing. It's probably bad enough that we already associate periods with shame. We're talking about them more here in the US, but in other parts of the world, women have to leave the village when they have their periods. And when there is that kind of association, that there is a lack of hygiene or something — when it's a natural process. I mean, part of it is just normalizing the conversation about periods, let alone the other conditions. But it's so lucky that you found someone that you could confide in.
Nkem: Right, right.
And she was there for me every step of the way. She understood what I was going through.
Not because she was going through it herself, but because she's compassionate, because she's empathetic. She listened to what I was experiencing. I talked to her about fibroids, and because I educated her about it, she was so compassionate. Not that she felt bad for me, but she didn't want me to go through that. And she actually urged me, “If you can, get the surgery. Because, first of all, fibroids are not supposed to be there. They're not normal. Second of all, you want your quality of life back, you want to improve your quality of life. And if improving your quality of life means getting those fibroids out, then do it. And I'll be there for you, supporting you every step of the way.” And that encouraged me so very much. She was amazing.
Lauren: And it sounds like it sort of created your friendship, but also has strengthened it.
Nkem: Yes, yes. That's exactly what it is. And I thank her so much for that. It’s amazing.
Lauren: What about the other influences in your life? Have you had other advocates?
Nkem: Honestly, I really haven't. Except for my mom, my sister and Alma. In addition to The White Dress Project, of course. Tanika has been such a strong supporter; she’s, like, “I understand that you don't want to get the surgery now. You know, I'm here for you. I'm supporting you. I can only guide you, but you have to be the one to make that ultimate decision. And whatever decision you make, whenever you're ready to get the surgery, just know that I'm here for you if you have any questions.” Because she's been through this rodeo twice already with the surgery. Tanika has been such an amazing part of my journey. Such an integral part of my journey. And I so, so appreciate her for everything. And for starting the organization!
Lauren: Absolutely. And also, on a certain level, how can you not end up being girlfriends with someone who you're talking to about this very personal experience, who shares that experience with you, as you mentioned earlier. It gives you an opportunity to become closer to people. And it sounds like in all of these cases, when you needed someone to stand up for you, they've done it and done it willingly and with compassion and empathy and care.
Nkem: Right, exactly. And I think every woman needs that, suffering with fibroids. I think they need an advocate. I think they need someone who's their cheerleader, their champion.
Because so many of the women suffering with fibroids are suffering alone and in silence.
That's why The White Dress Project was created, to create that platform so that women don't have to suffer in silence. So that we are bonded together as a community, fighting for the same issue, for the same mission. It's been amazing the reach that the organization has had since its inception. And I'm so proud to be part of something that's so much bigger than my own struggle, so much bigger than myself. It's so meaningful, you know, so meaningful for me.
Lauren: Absolutely. So, I know that there's no such thing as a typical day, particularly in the midst of a global pandemic. But I'm wondering, is there a typical day for you? And what is that looking like as you're balancing the demands of work and life, and managing symptoms?
Nkem: Yeah, that's a great question. So with COVID, my workload has actually increased. The work that I do with the United States Department of Health, in the HIV field, changes on a daily basis, especially with COVID. And like I mentioned to you before we started, we just completed our week-long virtual conference today. So I was focused on that for the past couple of weeks, because I created a training institute at the conference, the Intimate Partner Violence Institute; I worked so hard on that. So I was definitely focused on that for the past couple of weeks to ensure that it was executed successfully now that the conference turned from in-person to virtual.
Nkem: The intersection between HIV and IPV is actually bi-directional. People with HIV are more likely to become victims of intimate partner violence, and people who are victims of intimate partner violence are more likely to contract HIV because of the very nature of their victimization.
That's my second passion, IPV trafficking, gender-based violence as it relates to HIV.
So that's what I've been working on in the past couple of years, trying to just explore that area and become more knowledgeable in that area.
Lauren: It’s just incredible. This is such meaningful work. And then what you're doing as a board member on The White Dress Project … such meaningful work. Everything you're doing is about patient advocacy and community.
Nkem: Yeah, it's about giving a voice to people who don't have a voice. About marginalized populations who've been silenced. It's about advancing equity in a world that's so filled with injustice and inequities and inequalities. I've always said to myself, I want to be involved in work that gives people a voice, that serves humanity, that advances humanity, that strengthens humanity, that unites people.
Lauren: As a citizen of the United States, it's very reassuring to know that there are people like you who are working in public health, under government jurisdiction, who aren't pleased with the status quo, who are actually trying to make improvements. Because I think a lot of the narrative that we get direct from the government is: ‘Things are great, we're doing great.’ But actually, it's about doing even better.
Nkem: Right. It’s about not accepting the status quo. It's about evolving, it's about changing. We’re living in changing times, so we have to change with the times. Change doesn't come easy, nor does it come quickly. But if we have people coming together collectively, to take action against those injustices, against the inequalities that are so pervasive in this country … collective action is so strong. Strength in numbers. We can make a difference, we've made a difference.
History shows that through collective action, differences can be made.
It may not solve all the problems in this world, but it'll change something, and it will make somebody's life better.
Lauren: I’m fascinated about this relationship you have with body shame. Your relationship with your own body's functions and like the symptoms of the fibroids. When you're working as an advocate for so many other people, in what sounds to me like a challenge to their potential shames associated with perhaps being victims of intimate partner violence or living with HIV … that so much of your work is about saying that there isn't shame in this. And yet you still, yourself, struggle with your own personal shame, or have struggled with your own personal shame around your own body. It's really fascinating that this idea that we can be both, we can be both advocates, and still be working through our own stuff, right?
Nkem: I think being an advocate helps you work through your own stuff, your own challenges. Because as you're empowering other people, you're also empowering yourself. I truly believe that. When I first started with The White Dress Project, for example, I never knew how to advocate for myself, especially in the healthcare system. It can be extremely intimidating. But now I don't take any crap from physicians! If you're not providing me with the optimal treatment and care that I deserve, I will not hesitate to seek a second opinion, I will not hesitate to find another physician. I don't care what you think; this is my life. This is my health, and I deserve better.
Lauren: I’m mentally clapping, and I’m nodding at all this stuff! I'm gonna break my neck! It's really amazing. This idea of growth, that we can be learning as we're teaching, that we can be constantly growing and changing, that we are subject to change, that we're allowed to evolve. That permission to evolve, both personal self and professional self, simultaneously. It's such a beautiful idea that nothing has to be perfect; we can constantly make it better. It's a very hopeful perspective.
Nkem: It really is. And even with sharing my story, if you had asked me a year-and-a-half ago to come on your show and tell my fibroid story to the world, I would have been, like, "No, I don't think so.” I was not comfortable sharing my story in the beginning; I really wasn't. There's just so much cultural misconception around the condition. And I just didn't want to put myself out there like that; I didn't feel comfortable putting myself out there like that.
I grew up being told that you're not supposed to tell the world your personal issues, especially when it comes to health.
That's not anybody's business, except for yours and your family. You don't need to tell the world.
Lauren: That's a pretty common narrative.
Nkem: Absolutely. But now, I see how that can be very selfish, keeping your story to yourself. I think it's so important to give the world the gift of your story, because it can really help somebody else going through the same thing. And that's why I now, so freely and willingly, tell my story without hesitation. I don't even have to think about it any more.
Lauren: So it's almost like between your work with The White Dress Project and the Department of Public Health and Department of Health and Human Services, you have actually, through that work, found a way to empower yourself. You take empowerment from the people around you. But to actually create this balance between work and life, because your work is actually directly feeding your spiritual life in that way.
Nkem: Yes. Oh, my gosh, you just said it, Lauren; you just said it. That's exactly what it is.
Lauren: Because I'm one of those people, too. And I get it!
Nkem: You took the words right out of my mouth. You said it more eloquently than me!
Lauren: I don’t know, you’re very eloquent! Look, you’ve been through this journey of grappling with your personal shame, grappling with your diagnosis, the potential of future surgery. These fibroids, unless you're looking at an ultrasound, or you're showing fibroid belly, as they call it — when we get the swollen belly — they're not visible. So have you ever been in situations where you've been forced to validate the existence of your diagnosis to people who couldn't see it, and therefore didn't understand it?
Nkem: Yeah, oh, yeah. I think some of my friendships, I became a little distant because of my situation. They would ask me to go out, and I’m, like, “No, I just can’t,” and I would have to justify it to them, justify why I can't go out. “I don't want to go out because I fear having an accident. I fear clotting all over the place. I fear just being humiliated. I've been humiliated so many times throughout this journey, I don't need another humiliation.” I felt bad, but at the same time, I'm valid in how I'm feeling. If you knew the struggle, if you knew the physical and mental toll that this journey takes on so many women, then you would understand why I feel the way I do. And it's nothing personal against you. I'm not saying no, for no reason. I have a valid reason. So I’ve definitely had to justify my situation to many people, many friends, boyfriends.
I actually didn't even want to date because I don't want to be out on a date and I bleed through my clothes!
Lauren: Who wants to, yeah. No one wants to bleed, period.
Nkem: I know. I know. So, yeah, it's definitely forced me to justify my condition to a lot of different people in a lot of different situations, in a lot of different areas of my life.
Lauren: But it sounds like having to justify to other people, while it's obviously been a struggle, it's only made you stand even firmer on your own two feet.
Nkem: Oh, yeah. I think it's also caused me to be resilient. Regardless of whether people understand where I'm coming from, I'm going to continue to stand confidently, boldly. And courageously in my truth. I'm not gonna allow that to make me feel small, to allow me to retreat. I'm going to continue to accept my journey, embrace my journey. But also, not be fearful about relationships or losing relationships, because my mind and just my well-being, I think is so much more important. That's where I was coming from when it comes to that … to continue to stand boldly, courageously, confidently in my truth, regardless of whatever situation I find myself in.
Lauren: Where does that strength come from, for you? Does it come from a combination of being able to do this work that's feeding into your self-confidence, being able to have the advocates in your life that you can lean on, and also having your own inner strength that’s sort of risen to the occasion? Is it all of that stuff working all at once?
Nkem: I think it's a combination of so many different things. I definitely think it’s the fact that just physically, when I was first diagnosed, I was going through all that, and I still showed up at life. I was going through the physical pain, the physical trauma of having fibroids, and I still showed up at life. Upon reflection, I feel like that made me stronger without even realizing it.
Lauren: FYI, if you're a female, if you get a period, you're stronger. Because the world has not been designed around your needs.
Nkem: Right! So true. Oh, my strength comes from serving as well. Serving other women, serving other people who are disenfranchised, who are marginalized, I get my strength. And knowing that my story and my lived experience is helping to change somebody else's life for the good, for the better.
I get my strength from that; that actually fuels me.
Lauren: Will you be my friend, please?? I’m loving everything you’re saying! It’s so inspiring. We all need people around us who are growing as we're growing, too. You also bring up this idea of understanding, like with friendships over the years, that people might not have understood. But it brings up this idea in this world, in this country in particular right now, we're dealing with a lot of divisive stuff in the news and reasons to not understand other people. But it's amazing how, if you push past understanding into empathy … I don't need to understand what your experience is. If you tell me it's hard, that’s all I need to know. Really, if you're having a hard time, period, you're having a hard time. What is there to understand. It's as simple as just accepting your friends at their word.
Nkem: Right! And I think, if somebody is truly your friend, then they would understand. They would understand and they wouldn't make you feel bad about your struggle or about your situation, but instead they would be there to support you.
Lauren: And then you make new friends because of being true to yourself, like we did!
Nkem: Right! Be true to yourself. People will respect you so much more if you're just true to yourself. I so believe that.
Lauren: I am on board with that message. You may have lost friends along the way and gained new ones. But what about within the healthcare system? Have you experienced, perhaps undue prejudice — or privilege, either way — particularly in regard to the way you present, the identity that you present with. You present as a Black woman when you're in the healthcare system. And we also know that fibroids are slightly more common among Black women than among other races. Can you see your circumstances going through the medical system with fibroids maybe being different if you presented otherwise, if you walked in as a white woman, a white man. If you came in and you were someone different, and your identity was different, would your experience have been different?
Nkem: I can say most recently, in 2017, when I first moved to Maryland, I found a doctor online. She looked really good on paper.
Lauren: Ay, there’s the rub! (laughs)
Nkem: But my very first visit with her, she did an ultrasound on me. And she made a comment while she was doing it. She said, “Hmm, your uterus is massively distorted.”
Lauren: Fibroids! Why would you say that to a person?!
Nkem: I know, and I just taken aback by it, because I had never heard of my uterus described like that, to be honest. That was the first time. I knew why!
Lauren: Yeah, exactly. Why make a judgmental comment like that?? Ugh.
Nkem: I know. And she was, like, “You know, your uterus is the size of a woman who's five months pregnant?” I’m, like, “Yes." And even when I asked her, “What does that mean that my uterus is massively distorted?”, she didn't answer me right away. She just nonchalantly shrugged it off. She said, “Just what I said.”
Lauren: Oh, thank you for your words.
Nkem: Wow. Right. At that time, I was still very new at The White Dress Project; in 2017, that’s actually when I first started with the Project. So I kind of endured that, and I said to myself, okay, let me give her the benefit of the doubt.
Maybe she's just having a bad day.
Lauren: That’s so kind of you! How many white men would give someone the benefit of the doubt when someone pissed them off in a doctor's office. This gender and race experience … how much is a patient willing to forgive a doctor? Depending on these complex layers of identity … wow.
So you gave her the benefit of the doubt, and … ?
Nkem: Right, and I just noticed this pattern of constantly speaking to me like I was little, like I was less than. She was very sarcastic, very condescending.
Lauren: Did she know that you work for the Department of Health and Human Services, too?
Nkem: No. I don't have those conversations with her.
Lauren: Maybe if she'd known?
Nkem: I know. I unfortunately endured that for about two years, until I said, no, I can't take this anymore. I need to find another physician. Another reason that I didn't get surgery is because she actually told me I needed it. And I’m, like, I don't want her. I don’t trust her. So that's another reason … I probably would have done the surgery two years ago if I’d had a different doctor.
Lauren: But in the meantime, you’re paying her, she's getting services that you're paying for. And whether you're paying directly or your insurance is paying, she's being paid to treat you. She's your employee. She was disrespecting you the whole time.
Nkem: Very disrespectful, rude; I just couldn't take it anymore. I don't even know why I decided to stay for two years. Two years too long. I should have left her that first time.
Lauren: Well, you are at a different point in your own self-empowerment journey. So have you now found a doctor who is working for you in the best way?
Nkem: Yeah. He's amazing.
Lauren: I’ve had really good experiences with male OBs.
Nkem: Me too!
Lauren: I think it's because they're a little more gentle. And they have to have a female nurse with them in the room, and they ask a lot more permission questions, don’t they.
Nkem: They do! It's amazing. I've been going to this particular physician for the past, not even six months. So it's really new. And, Lauren, when I tell you it’s like night and day between this physician and my previous one, it's literally like night and day.
He takes the time to explain my condition to me, he draws things out for me.
He’s so compassionate, he's caring, he listens to my concerns, to my fears; he addresses those concerns and those fears.
Lauren: And this is not to say that a male OB/GYN is better than a female; it's just happens to be the experience that you and I have had. We also need more females who have had vast experiences, and we need more women of color in particular to be practicing medicine. There’s a lot of complex stuff at play here. But I'm just so thrilled that you found someone who wasn't practicing medical racism.
Nkem: Right. It's amazing. And you can tell he's very genuine. And I think a lot of doctors can take some notes from him.
Lauren: Would you say, having had this experience yourself … certainly racial inequality, perhaps a bit of gender inequality in the healthcare system … would you say that these kinds of inequities in the healthcare system are a public health crisis?
Nkem: Oh, absolutely. I work in the field of public health. And there's this fundamental principle that forms the bedrock of everything that we do. And that principle is that health care is a right and not a privilege.
Lauren: Then why are we still paying into insurance? If the Department of Health and Human Services sees health care as a human right, then what are we doing, America?
Nkem: It’s about the leadership administration. Whoever’s in the administration basically leads everything.
Lauren: And that changes every four to eight years.
Nkem: Exactly. That's why it's so hard to have a solid system.
Lauren: You need that to be a private system so that you have consistent leadership. It's kind of ironic, isn't it.
Nkem: It’s so ironic. So true.
Lauren: So, talk to us about your advocacy work. Because at some point along this journey, in finding sisterhood, in finding the people who could speak to your lived experiences, you became an advocate yourself. And you were already doing that through your paid employment. So what does that journey look like for you? Can you talk to us about
what you've been doing to raise awareness of fibroids and of health inequities?
Nkem: So, as I mentioned, my journey, at least with The White Dress Project, started out with me just seeking support for my own journey and my own struggle. But it's really evolved into advocacy, and this sort of lifelong mission to advocate for women who are suffering in silence and suffering alone, with this condition. It’s been so rewarding to be a part of this, to be a part of something that is really giving a voice to women, and is really making an incredible impact. And creating that platform where we can share our stories — because there's so much power in our stories.
And it's not easy to be that vulnerable. But there is so much strength and power in that vulnerability.
Sharing my story through The White Dress Project, it’s so healing and it's so liberating for me. And I know that it's healing and liberating for other women who hear my story, and it helps to break down the walls of silence — the guilt and the shame that keeps women suffering in silence — and it gives women hope. We all know also that storytelling is such a critical tool for advocacy. For far too long, our stories and our voices have been neglected, overlooked, silenced. But through my advocacy work with The White Dress Project, we are changing that. We're changing the narrative. The patient voice and story are at the center and at the forefront of everything that we do, and it's going to continue to be at the center and the forefront of everything that we do.
Lauren: Do you think that's also something where your work with The White Dress Project has in turn influenced your work in public health?
Nkem: Oh, yeah. With the the Intimate Partner Violence Institute, for example, that I created for this conference, it’s all about people with lived experience. I wanted them to hear right from the mouth of those who are going through it. Because it's easy for me to go up there and have some PowerPoint slides talking about that intersection, and all of that. But I don't think that resonates with people the way the lived experience resonates with people. And I feel it's like that for everything. You need to hear from the people that whatever issue you're trying to change is impacting; they need to have a seat at the table. They have to be at the beginning, middle and end of the change process. So that's why they influence each other. My work in public health at the Department of Health influences my work at The White Dress Project, and vice versa.
Lauren: How beautiful is that. This may be a tough question to ask you. And I don't know how much, professionally speaking, you’re able to speak to this question. But I'm going to ask anyway … In what way is our healthcare system working for patients? And in what ways does it require improvement? You're already working toward creating improvements, certainly in terms of utilizing and leveraging story to create conversation and to open people up to these other experiences. But I'd love to get as much as you can share with us of your take on that.
Nkem: From my knowledge, when it comes to this complex healthcare system, I guess a couple of things come to mind when it comes to what's working well for patients and what's not. We do have quality health care services. The United States has medical equipment, and ensures that citizens are able to get quality medical care. In addition to that, we also have some of the best-trained physicians and surgeons in the world. And we also have the freedom to choose our own health providers, if you have insurance. In and of itself, these are great qualities in our healthcare system that work well for some patients. But the problem is that there's unequal access in these high-quality services, which brings me to the areas that need improvement. I think there are more areas that need improvement than areas that are working.
Lauren: I am so glad you can say that. I'm also so glad we have people like you who are going to bat for everyday patients. So please, proceed!
Nkem: That’s my lifelong mission, Lauren, that's my lifelong mission!
Lauren: I’m on board with that. I'm buyin’ what you're selling!
Nkem: Yeah, we need people to be on board. So, what's not working? Health care services are exorbitantly expensive. And if you are uninsured, or underinsured, you will have access to very limited medical care. There's millions of Americans who are uninsured and underinsured.
And despite the fact that health care is so expensive, we have some of the worst health outcomes in the world.
Lauren: Yes, absolutely.
Nkem: In addition, we may have some of the best physicians in the world, but some of those great physicians are not providing equal high quality treatment and care — due to racism, and bias and discrimination. And these are just a few of the many areas that need improvement within our healthcare system. And these shortcomings, they really do negate that principle that I mentioned before — that health care is a right and not a privilege. And I don't know exactly what it will take to fix these complex issues that exist within the healthcare system.
Lauren: You sort of answered that, though. Like, the way we change it is by continuing to share patient stories.
Nkem: Right, continuing to share patient stories. But also I think it'll take stakeholders from different sectors uniting, coming together.
Lauren: Well, it’s either removing the private element. Or making sure the private element is broad.
Nkem: Right. Exactly. And it's gonna take … I'm gonna quote John Lewis right now.
Lauren: Ooh yes, because we ought to make good trouble!
Nkem: We’ve got to come together to make good trouble, And this quote resonates so much with me; he said, “It is going to take ordinary people with extraordinary vision to redeem the soul of America.” You know, by getting into good trouble.
Lauren: It gives me great hope that you're one of those people.
Nkem: Oh, thank you.
Lauren: How can I not hear your story and see where you are in your professional and personal life, and think otherwise. Guys, this is the kind of person we have on our side, and that's exciting.
Nkem: Yeah. One person can't change it all. But you can do something. You can do something.
Lauren: And everyone has different ways.
Everybody has their own gifts that they can contribute to the movement for change.
And whatever platform, whatever gift that I've been blessed with, I definitely want to continue using it to effect positive change.
Lauren: Well, I'd say you're a direct descendant of John Lewis in that sense. So, I'd love for you to offer some top tips here, Top Three Tips for someone who … maybe they suspect something's off, and they've got some kind of invisible condition brewing. Or maybe someone who's already been diagnosed, and they're living with fibroids, just like you. What would your Top Three Tips be for managing and living with invisible illness?
Nkem: At The White Dress Project, we're always talking about being your own best health advocate. And for me on my journey, I'm just using my experience to provide those tips. It's so important to be informed. It’s so important to know your options. Do research about your condition, and about the options that exist. Because pain bias, for example, is real. Medical bias is real. Discrimination is real. Medical gaslighting is real. So it's so critical for us to be informed about our condition, and about our options if we’re going to be effective collaborators in our treatment and in our care. The second tip, I would say, would be to trust yourself. You know your body better than anybody else. Physicians actually rely on you knowing your body to come up with a diagnosis, and if you suspect that something is wrong or off, then it probably is. So don't delay going to seek treatment. Don't allow doctors or anybody else to lead you to second-guess yourself. And I guess my last tip would be to seek a second opinion. If you're being dismissed, if your doctor is not listening to you, I would say seek a second, third, fourth, fifth opinion if you have to. And don't be intimidated by your physician. Your relationship with your physician should be a partnership. We're working in collaboration with our physicians to ensure that we are receiving the best quality care that we deserve. And if you're not receiving that, then you need to have the courage to be able to seek care elsewhere. I will reiterate this: We are our own best health advocates. Invest in your health and pursue optimal health, the way you pursue everything else in life. Because health is wealth. So we need to invest in it. And all of these three tips are us investing in our health.
Lauren: And investing in ourselves.
Nkem: And investing in ourselves, absolutely.
Lauren: Here's a fun Top Three list. This one’s my favorite, because it gives us a chance to get to know you even better. You’ve probably had to adjust around life with fibroids and maybe make lifestyle changes. I'm wondering what the Top Three Things are in your life that you turn to for unbridled joy. These can be secret indulgences, maybe comfort activities, maybe it's a guilty pleasure. But I'm wondering what your Top Three Things are that you turn to when you just need that grounding, fulfilling moment of total joy. Where do you go?
Nkem: Okay, so these might be boring! (laughs)
Lauren: No, I bet they're not. I'm sure I'll be like … yep, yep, yep.
Nkem: Okay! I'm a woman of faith. So, my faith is first.
Lauren: Why would this be boring? This is super exciting. Okay, great …
Nkem: Because you were talking about guilty pleasures!
Lauren: No, but it's also just a place of joy. And joy means different things for different people in different ways. I get the most from doing couch potato stuff. But faith is a place that you go. I think that's quite clear in the spiritual journey that you've undergone, and that you're sharing with other people. Even if it's not from a religious perspective, there is a spiritual element at play here. And your faith has obviously played a huge role in that.
Nkem: Oh, yeah. Just to speak a little more about that … my faith really does keep me grounded, and level-headed. It provides that light for me, in times of darkness. Whenever I'm feeling down or discouraged about any of the challenges that I'm experiencing, first and foremost I turn to my faith to get me through those hard times. My faith is absolutely something that I will never compromise. My faith has taught me really to look at my struggle with fibroids, and instead of asking, why is this happening to me, my question should be: what is this teaching me?
Is it teaching me resilience? Is it teaching me strength? Is it teaching me to use my experiences and my stories to empower others?
Essentially, my faith definitely gives me hope beyond my fibroids. It really does. I would say the second thing would be my family. My family is my support system.
Lauren: Nothing boring about this! (laughs)
Nkem: I’m judging myself! (laughs)
Lauren: It’s all right, we all have moments. (laughs)
Nkem: Yes! My family Lauren is really my support system, my foundation, my rock. And I don't know how I would have made it this far in my journey, both mentally and physically, had it not been for my support system that I find in my family. And lastly … I think I alluded to this a little bit previously … serving, serving women struggling with fibroids through The White Dress Project has been truly rewarding. Just knowing that my story and my advocacy have made such a positive impact in the lives of others, it really fuels me. It motivates me, it keeps me going. And that's something I will definitely not compromise, serving others. Even through my work with the United States Department of Health, it gives me so much joy knowing that I'm giving a voice to people who are marginalized, people who have been hidden in the shadows and forgotten, neglected.
Lauren: We’re honoring lives past and present — and future.
Nkem: Right. Exactly. So these are things that I will never compromise, that keep me going, keep me happy, keep me joyful.
Lauren: And they create a legacy as well, which is just a beautiful thing.
Nkem: Yeah. It’s such a rewarding, fulfilling thing for me. I live by quotes.
Lauren: Gimme, gimme!
Nkem: Just talking to you just made me think of a quote by Muhammad Ali. He said, “Service to humanity is the rent that we pay for our room here on Earth.”
Lauren: Yes! Oh, you give me goosebumps!
Nkem: I take that with me everywhere. It's so true. I so believe that I wasn't put on this earth to serve myself. I wasn't put on this earth for that.
I was put on this earth to serve others, to be a light to others.
Lauren: But that also doesn’t mean that you aren't allowed to take time and light yourself up, too. It goes both ways.
Lauren: I love that. You're picking some good quotes here today. What incredible, inspiring people. So what is your ask for listeners today? What can they do to support you and the fibroid community … but any community that you're a part of. You're taking part in so many different intersecting forms of identity. How can they support you and your community in the work that you do?
Nkem: Right, so when I think about The White Dress Project … you know, Kamala Harris just introduced …
Lauren: You mean our future Vice-President?? You mean our future President??
Nkem: Oh my God, yes, I was so joyful when I saw that. I was, like, thank you, Jesus!
Lauren: So tell everyone what happened … because Kamala has officially introduced the first bill, right?
Nkem: So the bill was initially introduced in the House back in March, by Congresswoman Yvette Clarke. But it didn’t get as much attention, because, I guess, Kamala Harris is more popular than Yvette Clarke. But we definitely appreciate … I don't want to say more popular … that sounds so bad … more high-profile.
Lauren: Yes, more high-profile. So the bill is to increase research into fibroids, correct?
Nkem: Yeah. One of the primary goals of the bill is to allocate about $30 million over the course of four years from 2021.
Lauren: Thats not a lot of money! In the health world, that’s pocket change.
Nkem: Yes So Kamala Harris introduced it in the Senate on July 30.
Lauren: At the very end of Fibroid Awareness Month! God bless you, Ms Harris! We love her.
Nkem: Right! It's the best Fibroid Awareness Month that I've been a part of like. That was the culmination.
Lauren: And it's been a bad year, and a weird year, and that's a highlight, for sure.
Nkem: It’s such a highlight, oh, my goodness, such a beautiful highlight. So I urge women, I urge supporters of women suffering with fibroids to call your Congressperson and tell them how important this bill is to you, to people around you. And ask them to co-sponsor this bill, please.
Lauren: Now, is there information on The White Dress Project website in order for people to contact their local representatives via email, phone, whatever is easy?
Nkem: Oh, yeah, we should put that up there!
Lauren: Okay, that’s forthcoming on The White Dress Project website. But you can go to your local government website, find out information for your local rep, and just call and say, “I want you to support the fibroid bill that Kamala Harris is now bringing to the Senate.”
Nkem: Exactly. Because we're definitely in conversation continuously with their offices. Even now that Kamala Harris has become the VP pick, they’re still very interested in the bill.
So that gives us so much hope.
Lauren: They’re an engaged office.
Nkem: Very much so. So we're going to be talking about ways to continue the momentum for this bill. It might take a while to make it into law, but …
Lauren: But it’s also not inconceivable, because it's not a ridiculous ask.
Nkem: Exactly. It really isn't. It's important. Nine out of 10 Black women will get fibroids, 70% of white women will get fibroids; 80% of Black women will be diagnosed by the age of 50.
Lauren: It’s such a common diagnosis, yeah.
Nkem: It’s so common! We can no longer overlook it. It's an important women's health issue. So we're really excited about this bill.
Lauren: Let’s support, support!
Nkem: Yes! Also, sharing your story. That's the big way that you can support the community.
Lauren: And we both offer ways. You can share your story through The White Dress Project, you can share your story through UnInvisiblePod. Contact all of us; we want to help you.
Nkem: Yes. And Lauren, I'm so grateful to you for your partnership.
Lauren: Oh my gosh, I’m so impressed by the work that you guys do. And by you as an individual. It's so fantastic that we all found each other. Well, I'm glad you reached out to me!
Nkem: Because I follow your podcast on Instagram. And I'm like, I love this! I love the fact that she's bringing invisible illnesses to the light. It's so important. I love your platform and the awareness that you're raising.
Lauren: Well, I love your platform and the awareness you're raising in society.
Nkem: Thank you!
Lauren: Absolutely. No, thank you. I truly appreciate that. So one more question for you, which is: What's next in your advocacy and in your wellness journey? What is next for Nkem?
Nkem: So regarding advocacy, we're going to continue to educate, advocate, tell our stories, tell our lived experiences. We're going to continue working together for change. That's not going to change. We're going to continue fighting. With regard to my wellness journey, I'm actually in current conversation with my physician about getting these fibroids out,
Lauren: I’m so proud of you!
Nkem: I had a conversation, a telehealth appointment, a few weeks back with my physician, and I said, “Yeah, I think I'm ready to take that next step to get these fibroids out.” Because I'm tired of being on the Depo shot. I feel like I'm a slave to the shot. Because it gives me so much relief that I have to take it every three months. There's just so much anxiety around that … what if I miss it? If I miss it, I'm going to end up bleeding again. And I don't want that. I feel like the shot is controlling me, and I don't want that.
I want to take back control of my life and my well-being.
So the only way to do that, currently, is to get surgery and to get these bad boys out.
Lauren: I look forward to seeing them out. And good riddance to those naughty fibroids! Don't you ever come back! On the flip side, Nkem, you are always welcome to come back. It has been such an honor speaking to you. Can you also tell everyone where they can find both the the US Department of Health and The White Dress Project, where they can find all of the stuff that you're doing, including the Intimate Partner Violence Institute?
Nkem: You can find the Intimate Partner Violence Institute that I created … it's not up yet, but it's going to be on something called the Target HIV Center. You just Google that, and click on it.
Lauren: We’ll link to it on the website for the episode, too.
Nkem: Perfect. So on Target HIV Center you'll see that, in addition to the other sessions from the conference. The White Dress Project, you can find us on Instagram @WeCanWearWhite. On Twitter, WeCan_WearWhite. Facebook, We Can Wear White. Our website is TheWhiteDressProject.org. And you can email us at WeCanWearWhite@gmail.com. So, please feel free to reach out, follow us, get involved in the work that we're doing. We definitely would love to have all of you join.
Lauren: Yeah, beautiful. I love that so much. Nkem, is there anything else you'd like to share with everyone?
Nkem: No. I love people so much and I'm someone that you can always reach out to if you're having any difficulties — whether it's fibroid or anything else. I’m a very positive person, even in the midst of challenges. So feel free to reach out to me, and I hope everybody is really staying well and staying safe during these challenging times. I hope you're all taking care of yourself, mentally and physically. Because health is wealth, and we need to take care of it. We need to invest in health. Thank you, Lauren, again.
Lauren: Nkem, thank you so much. It's such a joy to speak to you and I can't wait for everyone to hear this episode.
Nkem: Thank you. I'm so excited. This is amazing!