Fresh Take: Rebecca Bloom, WHEN WOMEN GET SICK

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0:30Hey, everybody. Welcome to Fresh Take from What Fresh Hell? Laughing in the Face of Motherhood. This is Amy. Today, I am talking to Rebecca Bloom. She is a women's health workplace and benefits advocate, a storytelling coach, editor, and content strategist. A former workplace and benefits attorney, Rebecca advocates for women coast to coast, in particular with Bay Area Cancer Connections, where she has served as a healthcare advocate, insurance, and workplace advisor for women fighting breast and ovarian cancer for over 26 years. Today, we'll be talking about Rebecca's new book, When Women Get Sick, an empowering approach for getting the support you need.

1:11Welcome, Rebecca. Thank you so much, Amy. I'm so happy to be here. So let's start with your path to becoming a healthcare advocate, which started, I believe, after taking care of your mother during her illness and what you learned during that process. So tell us about that. Yeah, definitely. So this turned out to be both professional and personal. It was just a mashup, right? I had this esoteric legal background where I developed these kind of ninja skills, employee benefits, health insurance, HR, compensation, workplace stuff. And then I moved to California from New York, and my mom was diagnosed with breast cancer.

1:47And she had it all. She had my dad, the greatest guy who was a lawyer. He had health insurance. He had a great job. And it was still a maze to get everything together. Second opinions. What decisions do I make? How do I make them? Who do I talk to? How do I get this done? So I went back to California and I met with the executive director of Bay Area Cancer Connections after that experience. And I said, hey, if this can happen to my mom, could I help your clients? And really, the woman laughed because she said, you know, it's not often that somebody with that specific background like that. I mean, it's less than 1 % of any big law for learning that stuff.

2:27And so she said, yeah, let's do it. Let's figure out how to bring you to all the people in our community and see what you can do for them. And then five years later, my sister was diagnosed. So I became super high risk. I had been medium high risk then. And so I had my own journey of dealing with that and navigating that. I also have two daughters who are now in their 20s, almost 31 of them. And so this just became so personal. It was about passion and it was about professionalism all mashed together. Let's talk a little bit about the health care system for anybody who hasn't actually gone through cancer or helping somebody with cancer or just any kind of severe illness that the health care system is designed to confound.

3:10Right. So let's set the table a little bit for what's wrong with our health care system as it currently exists. Yes, it is designed to confound. That was a really great phrase. It's designed to confound. It's designed to instill fear. It creates debt. It creates extra layers of complexity that really have nothing to do with healing. And that's exactly why I do this work, because I'm not a doctor. That whole world is its own thing and it's complicated. But what I have found is there are so many junctures where you could actually have the right conversation or create the right relationship to make those confounding moments better.

3:53And that's exactly why I wrote this book, because I've helped thousands of women at Bay Area Cancer Connections and also in New York, because I'm sort of back and forth all the time. And I thought to myself, what could I do to amplify this so that more people could understand these things? They're not secrets exactly, but they are useful techniques for moving the ball, smoothing the path, filling the potholes, seeing what could happen before it happens, anticipating it, setting yourself up for the better. So that's why I did this. But I want to talk specifically, if you don't mind for a second, about why our system is particularly challenging for women.

4:32I do, because you say in the book, could this book be for a man and a boy? And is it useful? Yes, but this is a book for women. So why is that? Yeah. So here's the thing about it. Women have been under-researched endemically. Like before, I think it was 1995 or 1997, women weren't even in part of research and clinical trials. How nuts is that when you think about it? Think about how that carries forward. An example would be the female heart attack. Right. Which manifests completely differently. Completely differently. And it's still called atypical. Right. Like if you walk in and you're not clutching your chest, they don't think, oh, could this be a heart attack?

5:09Because that's the typical symptom, but it's not as typical for women. You know, my daughters always laugh with me if I'm sweating or I'm fatigued or I have weird pain. They're like, Mom, is this a female heart attack? And it's almost a joke, but it's serious, right? Under researching of women over that long of a period that trickles out, it really radiates forward in a way that makes it harder for women to get diagnosis. Women are diagnosed later than men for so many conditions. So you have that. Then you have the economic issue. Women tend to be under-resourced, underemployed or unemployed more than men.

5:49So do the math, right? Then you have the hysteria problem. I don't know if you've ever read Dr. Elizabeth Komen's book, All in Her Head. I think I have read that. I'm certainly familiar with the idea that women are much more likely to experience chronic pain. That's right. And things that we call syndromes because they don't have a blood test or a definitive thing. Those sorts of things are much more likely to be experienced by women and they're misunderstood and underdiagnosed. True, but they're also treated like they're hysterical and get dismissed. Like literally your anxiety is making you think you have POTS, right, right, right.

6:21I have read in, you know, I help so many women, some of them show me their electronic health records. I've read the notes. Doctors say things about women that they might not even say about men sometimes. They talk about their reactivity in a certain way that is coded, it is. So there's that. There's the hysteria. There's also just the dismissal of women's pain that you just mentioned, right? Did you ever have occasion to listen to the podcast called The Retrievals? I sure did. And you mentioned it in the book. I'll put the link in the show notes because everybody should listen to this podcast.

6:53But tell us a little bit about the case that was uncovered. You know, this is at Yale New Haven Hospital, and it's a story around women who are there for reproductive endocrinology, right? So it's mostly IVF and things like that. And there was a nurse who had an addiction problem who was stealing the fentanyl and replacing it with saline. And these women were not getting their fentanyl when they were having their egg retrievals. And they were complaining about their pain. And people were dismissing it like, oh, no, no, no, you just feel pressure. from this, but that's it. I mean, I don't know what, you know, and this went on and on.

7:29They were getting salt water instead of fentanyl for something that would be extremely painful. Right. They were telling the truth. Right. I mean, it was like a crazy scientific experiment. Like you back out the pain relief and you see what happens. And that's what the retrieval showed. It saw what happened. And in that case, as I recall, what finally cracked the case was not six, eight, 10 women all expressing the exact same, I'm feeling excruciating pain in the same place. It was instead somebody being like, what are all these empty bottles of fentanyl? Like they found the physical proof that the nurse was doing it.

8:00And that's they're like, gee, I guess people have been mentioning. That's right. Like they're not getting any pain relief. That's when it was all put together. Exactly. And that was incredible journalism, the way that was all put together. And that was presented to people. It was a New York Times podcast. So excellent. So that sounded pretty familiar to me. But you also talk about I wanted to talk about how women are more likely to be uninsured or underinsured and how that can happen. So it happens a lot of ways. First of all, just economically, more women are in low wage jobs or underemployed.

8:31So they won't have employer provided insurance in those situations. Also, those jobs are less stable. So even if they do have the insurance, they could lose it more easily. That's one piece of it. Another piece is divorce. You know, nobody talks about this, But when a divorce happens, the rules say, hey, the spouse who is no longer married to the other spouse has to get kicked off. I have a story in my book about a woman who it was a good divorce. They really tried hard to be humane and treat each other right. But when push came to shove and the I's were dotted and the T's were crossed, one of the spouses had to lose the coverage.

9:09And then she got sick. and her whole family, her children and her ex-spouse were covered at the good medical system. And she found herself not able to access that care. Stuff like that happens all the time. And you talk in the book, too, about how comprehensive health care, good health care, you call it table stakes. Like it's absolutely crucial. And I remember being a young woman just out of college, living on my own, my dad telling me I had to get health insurance. And I was like, I have to pay my rent. I don't have money for health insurance. And I think that decision can sort of play out, right?

9:40I have kids to worry about and my health care comes after these 10 other things. Definitely. And Amy, I'm so glad you brought that up because this is one of the things, this is the oxygen mask thing. You really do need to put your oxygen mask on first. And women, particularly mothers, are conditioned to put everybody else first. There's a real tension there. Like you said, you know, you go, I have to pay my rent. I have to do this. Well, let's amp that up. I have to feed my kids. I have to pay for ballet lessons. You know, whatever it is, right? These things that you want to give your children, they can sometimes get in the way of you having what you need.

10:15Those table stakes, like I call them. Yeah. And then there's the, as if we need more problems, we need the reproductive health rights of women are under attack in the United States. You're getting different care depending on what state you live in. No question about it. And women's lives are endangered by that. That's another reason that I wrote this book. It wasn't in there, but I'll give it to you. I went to an event in Brooklyn called the Brooklyn Night of Ideas. I think it was 2023. And there was a woman speaking there. Her name is Catherine Colbert. And she is really just a rock star lawyer in reproductive rights.

10:48And she wrote a book called Controlling Women. And it was before Roe was reversed. But anybody that was paying a speck of attention knew that that was coming. And the book was so interesting to me. And I met her and had a conversation with her because the book basically says, OK, we lost in the courts. We've got to find other ways. And she's got a list of ways in this book. And, you know, I went right up to her and fangirled her and wanted her to sign my book. And I said, Catherine, may I call you that? And then I said, what can I do? What can I do? So she said, well, who are you and what do you do already?

11:24So I told her who I was and what I do already. And she said, double down, get the message out. You know how to help women in the workplace and the health space. Those are two huge arenas where differences can be made. Get out there, talk to people, write a book. Do you know how to write a book? Sounds like you do. Do that. Get an agent, go. And that was really one of the reasons that I did this too. I'm happy helping women in this bespoke one-on-one way. It's satisfying. But when she said that to me, I thought, wow, she's right. I've got to do more. And that's why I did this. Okay. So we've set the table for the problem and why it's a particular problem when women get sick.

12:04But this book is not just about, here's all the reasons why this is a problem. It's about what happens next. So we're going to take a break. I'll come back. We're talking to Rebecca Bloom. Her new book is called When Women Get Sick. Amy, let me tell you about a magical place that is so exactly designed to be in closed space, year-round fun for the whole family, that I bet you already know what I'm going to say before I even say the name. Let's say it together on three. One, two, three. Great Wolf Lodge. You got it, Amy. My kids loved Great Wolf Lodge when we went. You probably already know that it has a huge indoor water park with a wave pool, lazy river, a bunch of massive water slides, but then your pack can hit the other attractions because wait, there's more.

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15:27Let your hair be one less thing to worry about. See visibly thicker, stronger, faster growing hair in three to six months with Nutrafol. For a limited time, Nutrafol is offering our listeners$10 off your first month's subscription and free shipping when you visit Nutrafol.com and enter promo code laughing. That's Nutrafol.com spelled N-U-T-R-A-F-O-L dot com promo code laughing. Okay. So this book is, it's a path forward. Having been in this position of having to manage, I was managing somebody else's illness, but still like, I don't know what I'm doing. This is a template. This is a path. There's a very clear thing here.

16:08And you say that when women get sick, they don't need an overstuffed freezer of lasagna. They actually need something else. So talk about that. Yeah. No hate to lasagna. Right. That's nice, too. That's nice, too. But I think our knee jerk default is how do I help somebody? Oh, let me bring food. And that is great. But there are bigger things. What I feel is so important when a woman is embarking on a health journey, and even thinking about this before it happens, if you can, is draft your team. Who are your people that really can help you pull the right levers at the right moments? So you start with, for lack of a better phrase, a chief of staff.

16:51We have no problem when we're talking in the corporate world about org charts. But when we talk about our personal life, we never want to get to that. But really, it's useful. Let's do it. We have the skills. Why don't we use them, right? So you start with the chief of staff, really clipboard and a whistle. Let that person be the boss so you don't have to. And then you think, who are the people that could really fill the lanes in this fast break of a health journey that I'm about to have, right? So that would be, let's say you have a neighbor who happens to be a lawyer. This is a person who can write all your appeals, do all your talking to this system and that system and why isn't this covered.

17:31Let them help you. It's basically plumbing and they're plumbers. Let them do it, right? You have a friend who is an accountant or a project manager, let them spreadsheet for you so you don't have to. So you make sure you don't miss something. You don't miss a deadline. You don't miss a renewal of this coverage or a date for an appeal of something that didn't get paid that should have gotten paid. These are all things you can offload to your team once you have a team. Let's talk about who that chief of staff should and shouldn't be. Presumably, like I'm thinking when my kid got sick, of course, I'm the chief of staff.

18:06I'm the mom, right? And if I got sick, I am married. So my spouse could be my chief of staff. But is that the right decision or not always? I would say not always. If that person is super type A and needs this thing to focus on, then that might be the right answer for that person emotionally. But that person is also a caregiver. And we need to make space for what that feels like. Caregivers need help too. They need support too. Again, if it's one of those control freaky type A personalities, they may feel like driving is what they need to do. That's probably me. Yes. Right. Right. And so let's be honest about that.

18:48There are people who that is their emotional need, but there are other people who can step in and give that person some space and some help so that they can take care of their own needs. That person needs to take walks. That person needs to be with the dog. You know, that person needs to do their own meditating and maybe therapy and whatever they need to get through this because this is scary and hard. And putting a buffer around the patient, the person themselves that are at the center of this. Yes. You were talking about doctor's appointments as something that the chief of staff can be there listening because you can't listen when it's yourself or even your spouse.

19:25You can't, it's just. It's so hard. You've got your senses working over time. You're in a heightened emotional state. So bringing in a third or a second, right? whatever we want to call it, is such a useful, helpful thing to do. And I'll add to that, the electronic health records, don't read them yourself. And maybe your spouse isn't the right person to read them either for all of those reasons. You get test results before you hear from the doctor. That's right. And that is a tough thing. If I had a dollar for every person that was Googling a term they didn't know that they just read on their scan, for example, and possibly getting emotionally activated unnecessarily, I'd be a major philanthropist.

20:08Although I've been this chief of staff person and I circled that in the book when you said, sometimes you're seeing results on the portal and it's the next day before the doctor calls or comes into the hospital room or whatever. You're seeing it as a chief of staff and they do kind of, in my case, they outsourced to me. So you saw that. So you're gonna have to talk to your loved one now. I'm like, ah, I'm not a counselor or an oncologist or anything else. I mean, like, go, you go do it. You go find them this specialist and that specialist. Right. And I didn't feel capable either, but at least it wasn't me or my spouse as the patient.

20:39I was one step removed. Exactly. Going back to that building your team concept, if you have a friend who's a doctor and they're willing to read that stuff for you at seven o 'clock at night, that's a great get for your team. And usually they are because this is what they do all day. It's not hard for them in the way that is hard for you. So that's another thing to consider, too. You talk about preempting this. I think I have this right, that you're the sick person, that you go to somebody like the doctor who lives across the street and have the conversation before the specific ask. Will you be on my team?

21:14So tell us how that might go. Yeah. So this goes under the heading of proactivity. People say to me all the time, how am I supposed to be proactive about getting sick when I don't know I'm going to get sick till I get sick? Right. Right. And I get it. Okay, now when you get to being, oh, I realize now I'm on a journey, but you don't really have the specifics yet, let's say. That's another moment for really good proactivity. And this is probably the most popular piece of advice I've given to people and the one that they think is the most revelatory. And it's this. Reach out before you need something.

21:50Pick the right stakeholders. The person in the doctor's office who actually runs the show. HR at your office, right? Whoever those people are. A case manager at your insurer. Hi, this is my name. I'm starting a health journey. And it would mean the world to me if I knew that I could reach out to you should I hit a pothole. You would be so surprised. They love to hear from somebody who doesn't need something right now, first of all. And second of all, now you have a thread in their email. And when you reach to them the next time, it feels like an emergency to you, but they already know who you are.

22:27You're not a stranger. Yeah, that's such a good point. And if somebody came to me, right, and said, oh, you are so good at research, if I ever needed something. Yeah, I wouldn't say no. I'd be like, oh, they think I'm good at research. It would be, it's your honor to help somebody. Exactly. And yet it feels like this ask feels so, so huge. Yeah, yeah. Yeah. And it's also not a hot moment if you do it that way. And that makes a difference too, I think. How do you know if you're this person, I'm thinking about like, I had another loved one who got sick. And I mean, I am chief of staff, right? That's the anybody who listens to this podcast would like, oh, you just forget me to do it.

23:03So I had a loved one who got sick. And I immediately was like, well, that's it. You're gonna move in with me. And we're gonna and my loved one was like, thank you. But I actually have somebody else. And they did. And it worked. and it was fine. But is there ever a situation where you have to sort of manage hurt feelings over, but I'm your sister. I'm supposed to be running this for you. There is. And I think that's such a great question. Wow. You know, that's one I haven't gotten before, but it's a really excellent question. If you're the helper, remember that it isn't about you and take ego out of it.

23:35But if you were the sick person, I think I have to give you permission to do what works and not worry so much about that stuff at this moment in your life, you got to do what works. You got to make the best choices you can make. And later on down the line, if you want to have that conversation where you go, listen, I'm sorry, or I wish I could have leveraged what you offered more, but I really appreciate it. Okay, great. Yeah. But in the moment, do what works and forgive yourself for that in advance. That makes sense. And there's always something you can, in the case I'm thinking about that I was chief of staff or something that was happening.

24:09I had somebody who really wanted to significantly contribute, but she lived pretty far away. And so she became the, as you say, the like email untangler claim rejected person. Yeah. And that's a great job. I mean, I like that job. Maybe not everybody does. You can do it at two in the morning. You can do it in California. And it's very, very important. There's another job that's like that too. Just could you be in charge of all the paperwork, even if it isn't an appeal? Could you just really just get a hole puncher and a notebook and put all my explanation of benefits things in there so that I have them all in one place.