Real Pink Podcast by Susan G. Komen

Transcript

Adam: 00:00 If you’ve ever received a breast cancer diagnosis or you know someone who’s experiencing breast cancer, you know that it can also be hard to ask for help even when you really need it. However, there’s an unspoken cultural phenomenon of people of color keeping ailments to themselves and in some cases, even when it is too late, we advocate that talking about your diagnosis and your treatment with your support system can be empowering, healthy, and important to your wellbeing. Your friends and family want to help, but what if they don’t know? Today I have the pleasure and honor of speaking with Kwanza Jones. Kwanza Jones is a catalyst through her work as a sought after speaker, an accomplished artist, investor, and philanthropist. Kwanza is dedicated to sparking change. She’s also the founder and CEO of supercharged by Kwanza Jones, a personal development brand that boosts people and organizations to better improve the world together. Kwanza sits on several boards, including Susan G Komen. Kwanza welcome to the show.
Kwanza: 01:03 Hey, I felt like you included a drum roll.

Adam: 01:07 We can add that in. I love that.

Kwanza: 01:12 That’s it, the drum roll and guess what we’re here for the podcast today for.

Adam: 01:18 That’s it, drum roll please, I’m excited to hear from you. I know you’ve got a really interesting perspective on this, so let’s start with that. Why don’t you just, just give us a little bit of your story, why you’re involved with Komen, and why we’re talking right now.

Kwanza: 01:28 I remember when I was talking to Paula, Paula Schneider, who’s the CEO of Susan G Komen, and she was asking if I would consider being on the board, and I thought about it a lot because obviously everyone has always lots of things going on in their lives, but for me, ultimately the reason that I connected with Komen and that I joined is , not only is health important to me, but we also know breast cancer affects and impacts more than just women. I was really thinking, where in my life has there been someone who’s been impacted? And I realized that someone was me and I was impacted, not because I was diagnosed with breast cancer, but that I had two aunts who were, as well as a very good friend and her mother, unfortunately, she battled it for 10 years and she didn’t ultimately win that battle.

Kwanza: 02:23 And after ten years she died from breast cancer. So that’s really the big thing for me is ultimately Komen is about eradicating breast cancer. That’s what it is. And it’s that simple. And when I think about where and how this disease has impacted adversely so many people’s lives, almost everyone knows someone, whether it’s a family member, whether it’s a friend, whether it’s a colleague, whether it’s someone who may go to your church, whether it’s a neighbor, everyone can think of an instance where it’s impacted them adversely and has impacted someone in their lives or in their circle and in their sphere. So I just really, really believe in what Komen is doing and I want to be a part of it.

Adam: 03:13 Oh, that’s fantastic. And I’m glad you are because that way we get to chat about it. Yeah. And so you mentioned that you have a personal connection. Tell me a little bit more about that. Did you have some family members or how did that happen?

Kwanza: 03:26 I did, and even as I was saying a little bit before is that I had actually two aunts that had breast cancer and I didn’t know. And it’s interesting because one was on my father’s side, one was on my mother’s side. And I distinctly remember when I found out for one of my aunts, she was much older and I was helping her get dressed. And when I was helping her get dressed, I realized she did not have a breast. One had been removed and she had had a mastectomy.

Adam: 03:58 Wow.

Kwanza: 03:58 And it was quite frankly shocking because it’s usually you think, Oh, someone had some sort of illness, you would hear about it and had never heard about it. And then it was doubly shocking when it was a similar encounter with another family member on the other side. So I realized there’s definitely something potentially culturally that was impacting people, sharing these stories.

Kwanza: 04:26 And once again, those are some of the things that I was thinking about in terms of joining, Komen. Is it’s just everyone to impact how it is, if there’s any way being abled especially in communities of color, not exclusively, but especially in communities of color if we’re able to have these conversations more because it makes a big, big difference when you think you’re going to the doctor and you are going and getting checkups and then they ask about your medical history and you’re thinking, Oh okay, well my medical history is such that “Oh I haven’t been impacted at all by this disease.” And then later you realize actually I have quite a bit. Yeah, definitely. So those are things where the conversations matter, the communication matters, the stories matter and sharing those things. And when we look at it, I think there was a statistic, I remember reading that the African American women die from breast cancer, 40% greater than white women. And it’s like, wow, that’s staggering. And even if sharing that statistic helps people understand, we’ve got to tell our stories everyone, not just African American women, not just women of color, but everyone. We have to continue to share these stories.

Adam: 05:43 That’s right. And, so just considering your story a little bit more, do you think there’s any specific reason that your family members didn’t talk about their diagnosis with the rest of your family?

Kwanza: 05:53 You know, I think it’s a couple things. One was one of my aunts was much older, so I suspect at some point my family was saying, “Oh well, you know, you’re too young. You don’t need to know about all of these things.” But I understand when you’re younger, what I don’t understand is as you get older, then when do you share this information? When do you bring it up if you’re not proactively asking? And I remember in both instances I proactively asked and said, “Oh, this aunt had breast cancer and did this on the top breast cancer.” And found out the answer was yes. And so it made me wonder what if I hadn’t the best that I ever found out? And so I think definitely from a cultural perspective, and of course I can’t speak for all African American families, nor do I say that I am intending to, but I do think there is, I think there’s a cultural norm of having to struggle in silence.

Kwanza: 06:56 And when you’re struggling in silence, that means you cannot show any weakness at all. And if you have a disease or if you have an ailment or if you have a medical or health issues such as breast cancer, it’s nothing that was shared. And I’m wondering if it was nothing that was shared because it’s a situation of saying, Oh, we have to be the ones, especially women to make sure the households are held together to make sure families are held together and especially in an African American community. So those are some of my best guesses as to why it may not have been. But what I think is critical is if you think about how do you change the story, how do you change the narrative? And instead of it being that, “Hey, even if you’re saying, okay, I’m an African American woman, I’ve got to hold everything together. “

Kwanza: 07:48 Even if you think from the perspective of will because I need to try to hold them things and I have to make sure everything stays together. That’s exactly why I need to share so that I can get support so I can get more help when I need to. And then on occasion it’s okay to share the burden and not have to suffer alone.

Adam: 08:08 And has your family been more open since you found that out? Do you communicate more?

Kwanza: 08:12 Oh, completely, Adam. Oh my goodness. Let me tell you and for that I’m thankful. Quite frankly, it’s not solely just about breast cancer, it’s about any sort of health issues that you’re having. You’ve gotta make sure you have to make sure the communication is there. And what happened in this instance specifically because of finding out about the breast cancer that two of my aunts had and having the conversation about it, it was a door that opened and it opened and it was open. And then from that point on we were able to have a lot more open discussions and dialogues.

Kwanza: 08:51 I really look forward to a time and a place in a world where talking medical issues such as breast cancer is as easy as saying, Oh, I have a hat. You have a hat. There’s no stigma attached to it. There’s no shame attached to it. No one asks to have breast cancer. It’s like, no, you’re not asking for that. But if instead of just like, “Oh, okay, so how are you doing? Oh wow. I went to the doctor and I found these things out and I really could use some help.” If we get to a place where it’s just that common, then we will be able to even have more changes because I think so many times people are thinking that, okay, well it’s still someone else that that’s impacting.

Adam: 09:30 Yes. That’s right.

Kwanza: 09:37 So that’s my goal, my dream, my hope beyond eradication is that even as we have the lead up to trying to just completely get rid of it and have the research behind it and have the support and the conversations behind it, that we can just really talk about it in a way that’s open. And I think of it even like this, we’re talking and we’re on this podcast speaking about it in many ways this, and I wonder if this, for a number of your guests has been one of the instances where they’ve been the most open about speaking about it because this is a platform and a forum for them to be able to,

Adam: 10:13 Right. And sometimes it’s, it’s easy to speak to a stranger and so especially a stranger with a nice hat.

Kwanza: 10:17 Adam, that’s it.

Adam: 10:22 That’s it. That’s the secret. So, I would, I would gather about what you’re saying, it sounds like this has actually made your family closer. Is that a, is that a good assumption?

Kwanza: 10:31 Absolutely. Absolutely it has. And I think it’s one thing that you have a tradition of oral history. You have a tradition of that,’s the way stories are shared, you don’t have everyone who’s writing blog posts about it. You don’t have everyone that’s writing a book about it. So this oral history and oral tradition is so important. So when I think, wow, if we’re able to talk even more, especially when you have those age differences, it’s like if you don’t, if you don’t talk, think about how much you’re missing out on and you’re never going to be able to know.

Adam: 11:06 That’s right.

Kwanza: 11:07 So the openness, I’m so thankful for it. I’m so thankful for it.

Adam: 11:10 Yeah it’s, it’s important, right? And it helps you to better care for yourself and know more about your health and your history and hopefully it can help you know, your family for generations to come as well. And, that’s really critical.

Kwanza: 11:21 Well, and it’s interesting because I know there were some things, even when you go and you’re getting various different tests before ,people would always ask, “Oh, on your mother’s side,” they would never ask about the father’s side. Never ask about, okay, well is there anyone in your family in your father’s side? So once I found out that my aunt had, then I started sharing that information because it’s still important to know now the doctors will ask in general, anyone on any of the sides in your family who has been affected by it..

Adam: 11:52 That’s right. So zooming out, speaking just a little bit more broadly, you know, there are a lot of articles and studies about keeping ailments a secret, and that’s not really being talked about. Any thoughts about why that’s not a topic of discussion right now?

Kwanza: 12:07 Yeah, it’s, you know, and I think mental illness is one of, of many elements that people, people do keep secret. And I think in part it’s because you can’t physically see it. Think about it, even with breast cancer. So oftentimes if you’re only looking at someone being ill is something that you can physically see and identify with your own two eyes, then you’re missing out on a lot of things such as mental illness, such as various cancers, such as other different struggles that people are going for. When someone says, “Oh, I broke my leg”, there’s no shame involved with that. If someone says, Oh, well you know “I’m depressed.” Okay, why is there the stigma and the shame there? I think that’s where secrecy comes from is because of shame. So it takes, it takes, I would say everyone to normalize these conversations to make sure there is no shame at all.

Adam: 13:04 Right. Well and I think with depression or breast cancer, you didn’t ask for depression or breast cancer. It’s something that happens to you. There should not be shame in that and therefore if there’s not shame in it, then we can share it openly and be honest with communities and get support. Right?

Kwanza: 13:20 I think it even begs a deeper and bigger question, which is, is it the person who is suffering feeling shameful or is it the person who is not, who is making someone feel ashamed of it?

Adam: 13:36 Or is it both?

Kwanza: 13:37 Or is it, exactly and that’s what I was getting at. I think it’s both. You have to think there has to be something, something that’s preventing people from being more open about this and what is it? If we can get to the issue of like, what’s the root of this? Why is it

Adam: 13:52 right? Because you do deserve that people help you and you do deserve because every, everyone has value and, and needs that support. That’s right.

Kwanza: 13:59 And I think that what you just said is so important. It’s like, yes, you deserve to have someone help. You deserve that support. Just literally always thinking you don’t have to do it alone. And I always think that there’s, even with my company, I always say no one succeeds alone. Sometimes you need a boost. And I think in this instance it’s the same thing whether you’re dealing with trying to develop personally or whether you’re trying to get through and be supported when you’re having some sort of physical or mental health issue.

Adam: 14:31 That’s right. That’s right. So what advice would you give to families who keep their ailments a secret?

Kwanza: 14:40 Ooh, it’s an oversimplification when you say just talk. Because if it were as easy as people just talking about it, more people would. So I would say the advice is find something that you can compare it to that is easy for you to talk about. Think of it in that same way, which ultimately means it’s a mindset shift. And then share from that place. If you, if I were to ask you Adam, “Oh, what’s one of the, you know, have you read a good blog or have you seen a good movie lately” I suspect you’d be able to think of something almost immediately to be able to say, so using even something as simple as that saying, “All right, well I can just equally share health information” especially now I get it if people were saying, “Oh, I want to be private and I don’t want to disclose it to people, I don’t know” well disclose to people you do know and just know that oftentimes there will be more people who will be there and willing to help and support than who won’t be. And I’m wondering if part of it is that “Oh, I don’t want to be a burden.” Quite frankly, I’m even thinking of my mother in this instance who is like, “Oh no, well I didn’t call you because I figured you were really busy.”

Kwanza: 16:02 Okay, well likely but that’s not a good reason not to call. I think it’s akin to that like, “Oh well I didn’t want to be a burden” because I’m thinking this and everybody is transferring what their feelings may be on to other people as opposed to it being like just try, you know what? And if you have a conversation with one person and it doesn’t go as you anticipated, have a conversation with another and have a conversation with another.

Adam: 16:28 Yup, that’s right. That’s right. I love that. I love that. So last question. What advice would you give to someone who may have a diagnosis and would like to share that with their family and ask for support?

Kwanza: 16:42 Ooh, wow. It’s so interesting because I think about this and in many ways I feel ill equipped to even answer it because I haven’t had a diagnosis. But I think if I had, what would I want someone to give me for advice? And what would I hope that they would tell me if I were concerned about sharing or not sharing. And the advice would be once again, understand that no one succeeds alone in any way. So the advice would be no one ever succeeds alone. So in terms of being able to successfully have a support system to successfully be able to continue with everything that’s involved with the diagnosis, not only just the, physical things that you’re going to have to deal with, but even mentally and emotionally, what’s gonna have to happen that really- just know no one succeeds alone. So in order to be more successful, lean on people, let them be a boost.

Adam: 17:51 Yeah. And if I can have one thing, no one succeeds alone. And that’s okay. Right and that’s okay.

Kwanza: 17:58 Well, I think it begs the question where is it and how did it become this unwritten rule that people think, “Oh, I have to do it all myself.” Like where or where is it and how is it determined or believed that, “Oh, if I’m reaching out for help, to get help from others, then it diminishes me in some way.” And I think in many instances, that’s what ends up happening is people think, Oh, it makes me look weak if I share this diagnosis, if I’m talking about an illness, if I’m saying I’m not completely 100% okay. But you’re saying it is, it’s okay. It’s okay. In fact, it’s like, it’s, it’s not expected that you would be because no one is.

Adam: 18:44 No one is, no one’s 100% okay all the time.

Kwanza: 18:47 Oh, Oh, completely not, we all have something- so true.

Adam: 18:53 That’s great. Well, Kwanza, this has been fantastic. I can’t thank you enough for coming on the show and just sharing your story and your insights and I just really appreciate your time. I’d love to have you back some time.

Kwanza: 19:06 Thank you. Thank you. Thank you. And Adam, I would absolutely love to be back at any point in time. And once again, being on the board of Komen has been so wonderful and I do just want to, I want to share one thing, and that is, Komen now has the African American health equity initiative they’ve been working on, specifically to make sure that women in communities of color understand that research is being done. You should share your stories more, and it’s just something that I thought would be important to share. It’s been great talking to you.

Adam: 19:42 I love that, thank you for sharing that.