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732: Secrets

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Prologue: Prologue

Susan Burton

It's This American Life from WBEZ Chicago. I'm Susan Burton sitting in for Ira Glass today. There are these videos I've been watching-- videos of female politicians telling very personal stories. Here's one of them. It shows Gretchen Whitmer. She's now the governor of Michigan, but she's speaking here a few years ago when she was a member of the state legislature.

Gretchen Whitmer

I've said it before, and I will say it again. This is by far one of the most misogynistic proposals I've ever seen in the Michigan legislature.

Susan Burton

Whitmer's explaining why she's voting no on a bill that would forbid women from using insurance to cover abortions, unless they bought separate abortion insurance, what Whitmer calls "rape insurance."

Gretchen Whitmer

And for those of you who want to act aghast that I'd use a term like "rape insurance" to describe the proposal here in front of us, you should be even more offended that it's absolutely accurate description of what this proposal requires. This tells women that were raped and became pregnant that they should have thought ahead and bought special insurance for it.

Susan Burton

She's been talking for several minutes, when suddenly she stops, sets her papers down.

Gretchen Whitmer

I have a lot more prepared remarks here, but I think it's important for me to just mention a couple of things. So I'm about to tell you something that I've not shared with many people in my life. But over 20 years ago, I was a victim of rape. And thank god it didn't result in a pregnancy, because I can't imagine going through what I went through and then having to consider what to do about an unwanted pregnancy from an attacker.

Susan Burton

The whole time Wittmer talks, she grips the sides of the lectern. Her face looks like she's in pain.

Gretchen Whitmer

I am not enjoying talking about it. It's something I've hidden for a long time, but I think you need to see the face of the women that you are impacting by this vote today. I ask that my comments be my no vote explanation.

Susan Burton

My no vote explanation, she says. Whitmer's story wasn't planned. She said later that she decided to tell her secret in that moment, standing at the mic. As soon as she left the floor and got into her car, Whitmer called her father. She'd never told him that she'd been raped. She didn't want him to hear about it on the news that night. She hadn't expected to tell the Michigan legislature before she told him.

I wondered if the call to her father was harder. I think it's sometimes easier to tell a secret in public than in private-- safer to have that distance. When I first saw Whitmer's video a year ago, I was on the verge of revealing a secret in a very public way in a book that was about to be published. I'd written a memoir about my eating disorder. And until recently, that eating disorder, it had been a secret from everyone in my life.

Sometimes people say "everyone," and then follow it with an "except," like, except my mom and my best friend. I really do mean everyone. Not even my husband knew, and we'd been together for 25 years. I never talked about it, and I'd also never been in therapy for it. When I finally did seek help, I was 45.

In the very first session, my therapist, trying to get the story straight, or maybe just trying to get me to hear how absurd this sounded, said, you wrote a whole book about this, but you've never talked about it with anyone? That was right. I'd gone to see the therapist partly because it did seem kind of messed up to me, what I'd done. I knew it was just as urgent to understand my relationship with secrets as my relationship with food. That's where I was when I watched Whitmer's speech, thinking a lot about secrets and why we tell them and the form they take when we do.

What made Whitmer's speech so powerful was that her secret was not just a confession. It was an argument. It was told to persuade. I was moved by her video, and I went looking for others like it. Of course, politicians tell personal stories and speeches all the time, but disclosing something you've kept private for years and doing it in a legislative session, sometimes spontaneously, that's pretty new. Almost every example I turned up was about sexual trauma, which, I mean, there are a bunch of reasons for this, but a big one is the increasing number of bills that try to restrict access to abortion.

I watched videos from all over the country-- Victoria Steele in Arizona, Theresa Fedor in Ohio, Mandy Wright in Wisconsin, Nancy Mace in South Carolina. One of the things I wondered about was what prompted them to speak. Like what exactly made them stand up and say it? A couple said they were infuriated by the conversation in the room, comments like women lie about being raped. And I wondered what it felt like to say the secret.

When Yuh-Line Niou disclosed to the New York state assembly that, at age 13, she'd been abused by a teacher, she drew attention to what was happening in her body as she spoke.

Yuh-line Niou

I never speak on this bill for this reason because I literally can't stop shaking. Thank you so much.

[APPLAUSE]

Susan Burton

Just a couple of weeks ago, there was another similar video that got a lot of attention from New York Congresswoman Alexandria Ocasio-Cortez. She was talking about the riot at the Capitol, and then she revealed this.

Alexandria Ocasio-cortez

I'm a survivor of sexual assault, and I haven't told many people that in my life.

Susan Burton

Ocasio-Cortez didn't say this in a legislative session. Her video was on Instagram Live. But it felt like the others I'd watched in that she was using her secret to make an argument-- in this case, about the impact of trauma. That different kinds of trauma compound on each other. She and the others spoke out because there was something important at stake. They disclosed their secrets as a public service.

Of course, for most of us, the reasons we tell secrets, they're not as straightforward. My own reasons for telling my secret, I can't even call them reasons. That's too rational. What I had was an urge to tell, one driven by desperation, obsession, anger, a longing to be known and understood. There are all kinds of secrets and all kinds of reasons for telling and not telling. That's our show this week-- why we tell secrets and what happens after we do. Stay with us.

Act One: My Own Very Serious Comedy About Women and Food

Susan Burton

Act One, My Own Very Serious Comedy About Women and Food. So let's get into why you might hold on to a secret, why it might be so hard to tell. And if you have an eating disorder or are in recovery for one, a heads up that there's stuff in here that could be triggering.

I want to start by telling you about a movie, one that I saw as a teenager, one that addressed my secret directly. It was an arthouse movie called Eating, subtitle, A Very Serious Comedy About Women and Food. The summer I was 17, my mother and I went to see it together.

Woman 1

What are you doing?

Susan Burton

I'd been binge eating for a couple of years by then. In fact, I'm sure I binged before the movie. Sitting next to my mother, I was uneasy. My bingeing was a secret. It was like the movie itself might give me away.

Woman 1

You binge, don't you?

Woman 2

No, I was just having a--

Woman 1

Oh, come on, I've been bingeing since I was your age. I know about bingeing.

Woman 2

Please don't tell my mother I'm eating.

Woman 1

Do you know how you're going to stop?

Woman 2

I'm going to quite eating altogether. It's the only way.

Susan Burton

Quit eating altogether. This was my only way, too. Within a few years after that movie, I was anorexic and back to bingeing, then anorexia again. More years passed, decades. Like some of the women in the movie, I never stopped having an eating disorder.

Woman 1

I'm never going to ever be able to be like normal people with food. I mean, I'm always going to be at the mercy of it. And it's a very, very scary feeling. It's very, very powerful, and I hate it.

Susan Burton

The summer I was 45, I watched Eating again. The first thing I felt was nostalgia-- shoulder pads, bran muffins, Laura Ashley, lines like, "You got a perm."

Woman 1

You got a perm.

Susan Burton

And the second thing I felt was, oh my god, not only is this movie about eating, it's about telling, which was the thing I was obsessed with at that point. The movie is fiction, but it feels like a documentary because a lot of it is women staring into the camera telling personal stories about food.

The setting is a 40th birthday party in Los Angeles, and one of the main characters is a filmmaker named Martine. She's making a documentary to help her understand her own eating disorder. I identified with that. At first, Martine tells everyone at the party that her film is about women in southern California. Finally, she owns up to her real subject.

Martine

To tell you the truth, my whole documentary is about that-- women and food. That's really why I'm here for.

Woman 1

Really?

Martine

Yeah.

Woman 1

Why then did you say the documentary was about women in California?

Martine

Well, actually, it's not a southern California behavior. It's more general. It seem awkward to people when you say women and food. You just start wondering, why women and food? It's the most terrible thing.

Susan Burton

Just like Martine, I'd hidden my real subject. That eating disorder memoir I was writing, I told people my book was a cultural history of the teenage girl. It actually had started out that way, but it took me a long time to admit what I really wanted to write about. For years, I was ashamed of my own story, same as Martine.

Martine

You can say I'm an alcoholic. I feel, oh, I am a drug addict. That's OK. I mean, it's kind of interesting. But just say, I have an eating disorder, I just want to eat, I just want to-- that's so unattractive. It's so disturbing. I just was never able to tell that to anyone.

Susan Burton

In lots of ways, this movie is dated and judgmental, but it's unapologetically about eating, which still feels radical. One by one, the women come and sit before Martine's camera, and she asks them, tell me, do you have any problem about food? At the end of the movie, she says that hearing their stories has changed things for her.

Martine

And I feel so close to them. And it's such a wonderful feeling. It makes me feel I don't want to be alone anymore. I want to be able to share things with other people, you know?

Susan Burton

Maybe this sounds sappy, but these lines did something to me. It's what I wanted, too. I wanted Martine to invite me to sit in front of her camera and ask, do you have any problem about food? I wanted to be Martine, asking others that question. I wanted to be at the party with other women, talking.

I closed my laptop. I went downstairs to the kitchen, and from the freezer I took out a lemon bar the size of a checkerboard square. I put the lemon bar on a plate the size of something a child would use at a tea party. I sliced the bar into strips and then into tiny bites. I sat at the table, and I ate all the bites. Then I wanted more, but I wouldn't let myself have it.

By this point, I'd had enough therapy to understand that what I did with food was what I did with people. Fearful of connection, but so hungry for it. Sitting at the table, I started to fantasize about making my own version of the film, a radio version. I wanted to have a party like in the movie, but I didn't know who I'd invite.

A year passed. I got a little better. I told people close to me about my history. I told others. I talked more. Then, my memoir was published. I'd expected to hear from readers who connected with my experience of an eating disorder. What surprised me was how many also connected with my experience of not talking about it. I realized, here were my party guests. I emailed them back with invitations to speak.

Reader 1

I've not really had a conversation with another person who has suffered from an eating disorder. And it sounds wild to admit that, but it's true.

Reader 2

I think this is the most I've ever talked about it. But it's certainly the most I've ever talked about the bingeing side of things and eating other people's food.

Reader 1

And to be honest, aside from my therapist, you are the first person I've ever told about that bingeing, because I am so ashamed of it. I am so ashamed of the way I looked then, what I did then. I just-- I-- yeah, ashamed.

Susan Burton

Have you talked to anybody else besides the nutritionist about this stuff?

Reader 3

Just you.

Susan Burton

Yeah. How does it feel to be talking about it?

Reader 3

I'm fine talking about it with you, because I know you really get it.

Susan Burton

Yeah.

How does it feel to be talking about this stuff? I asked everyone that question, and I paid attention to what it felt like for me. Sometimes, I felt self-conscious. I seize up in conversation, have more ease when I write. But I also felt the connection I'd craved. I'd never met these women, but I knew them, because we'd been alone in the same ways.

Reader 4

It is such a lonely experience going through daily restriction, purge, and performing all the behaviors of a normal diet without anyone catching on. I mean, I think that sharing stories really does help, because that is the scariest piece, at least for me, of living with an eating disorder is feeling so alone.

Susan Burton

Yeah, I mean-- yeah, me, too.

Some of them said, your book made me feel less alone. And when I said back, well, this conversation made me feel less alone, I half worried it sounded insincere and half worried they'd be weirded out if they knew just how sincere I was. And in every conversation, we talked about the thing I was so curious about-- why it was so hard to tell anyone about this stuff or talk about it.

Reader 1

I think the secrecy, to be honest, is, it's that how eating disorders, at least for me, are deeply tied to sexuality. I think that that's why it's such a hard thing for me to talk about, because it's very much tied to that.

Reader 6

There's two things. For the anorexia side of it, I think that it's because you don't want people to think you're shallow. I don't want people to think, oh, well, she just wants to be skinny. And with the bingeing, anyone that's never experienced it, you sound out of your mind. It's just, it doesn't make any sense at all. And when you explain it as though it's an addiction and whatever, maybe people have some better sense of it. But it's helpful to talk to someone who's been there.

Reader 3

I think-- I mean, I think for me, one of the reasons why I haven't been able to talk to my therapist about it and get really meaningful help is because I just don't even know how to talk about it. Like, I don't hear other people talk about it. I guess, I kind of know what the vocabulary is, but basically, my only experience is I read other people's books about it. I don't talk to other people about it.

Susan Burton

Among these women, there was one who was really brand new to talking about her eating disorder, had only recently even identified it as an eating disorder. And that's the conversation I'm going to play next. Because on one level, it's exactly what I'd hoped for-- just a real and good conversation with a woman who shared the experience of having an eating disorder. But also, I think it gets at something important about why we keep any kind of secret. The conversation started the same way as all of them, with Audrey-- that's not her real name-- telling me the history of her eating disorder.

Audrey

I thought nobody else had ever done that. I had never heard of bulimia. I thought I was the only person who had ever done that.

Susan Burton

Audrey is 63, and she started bingeing and purging in college in the 1970s. This was before eating disorders were on after school specials, before bulimia had been defined in a psychological journal. I wondered how Audrey had gotten the idea.

Susan Burton

Do you remember how it occurred to you to do it, to purge?

Audrey

I don't remember the initial time, but I had been eating-- as my brain still says, eating like a pig. And I thought, well, I've got to get rid of this. I've got to make up for it somehow. And so, that's what I started doing. And then I would spend my days in the dining hall eating, and then my afternoons finding a bathroom somewhere to get rid of it.

Susan Burton

Audrey kept bingeing and purging. And then she stopped the purging part.

Audrey

And what finally stopped me was I went to the health service for something, I don't remember what. And there was a bottle of ipecac on the counter. And when the nurse was out of the room, I stole it.

Susan Burton

Ipecac syrup is used to cause vomiting. It used to be a common thing that people had in their medicine cabinets.

Audrey

And I went back to my room, and this was Halloween night-- I remember. And I drank the entire thing, and I got so violently ill.

Susan Burton

Had you used ipecac syrup before to purge?

Audrey

No, just a finger.

Susan Burton

And how come you drank the whole bottle?

Audrey

I was so angry with myself. I was just so angry with myself, I thought, I'm just going to drink this whole damn thing.

Susan Burton

Yeah.

I knew that anger, knew the feeling of standing in a dorm room hating myself. Audrey told this one story about leaving campus to binge that I so related to. I knew the same shame.

Audrey

I was walking up the street to a chicken place that I knew of, that I knew no other college students went to. And that's why I went there and on my way to a binge. And there was this guy who started walking behind me, and he started whispering at me, big ass. Big ass. And I wasn't scared, I was ashamed. I was embarrassed.

I mean, the fact that this guy could have attacked me or whatever his problem was, wasn't-- and I never turned and looked at him. He followed me all the way to the place, and then I went in. And I was embarrassed because-- oh, my god, I forgot this. I was embarrassed because I thought, oh, now he knows where I was going. He knows I was going to eat. Like, that was the problem.

Susan Burton

Right. I mean, it just becomes so all-consuming that, of course, that's what everybody else is thinking, because it's the central part of your own experience.

Audrey

Yeah. I have spent so many years thinking about this. I can't believe it. I mean, really, if you put it all together, years of my life this has been sort of the soundtrack going on underneath everything else.

Susan Burton

Even as Audrey kept bingeing for most of the next 40 years, that's not what she called it.

Susan Burton

And then, in your head, it sounds like-- the phrase you used, "eat like a pig"-- is that the phrase you used?

Audrey

Yeah.

Susan Burton

Yeah, I mean, my phrase was "eating bad."

Audrey

Oh my god, when I read that in your book, I thought, I so get it. I so get it.

Susan Burton

Yeah.

Audrey

Susan, I didn't know binge eating disorder was a thing, until I read your book.

Susan Burton

Yeah? So how-- I mean, how did you make sense of it for yourself, without having a name for it?

Audrey

I just thought of it as weakness. I just thought of it as that I was so ridiculously weak that I couldn't stop eating.

Susan Burton

Binge-eating disorder is the most common eating disorder, but the least talked about. It only became a formal eating disorder diagnosis a few years back. When I was in college in the early '90s, I spent hours in the stacks reading about eating disorders, and I couldn't find mine in any of the texts.

The best I could determine was that I had bulimia without the throwing up, but that seemed like half a problem. I know I had a whole problem-- a real one. I had this kind of fiery, righteous thing going on where I felt like I knew more than the scientists. But my certainty that there was something really wrong with me that I alone had diagnosed did not feel triumphant. It was incredibly isolating to have an experience that I couldn't find named anywhere.

A binge-- it's eating a lot, all at once, past the point of discomfort. Binge-eating disorder-- I can offer a textbook definition of it here, but Audrey's experience is the textbook definition.

Audrey

I just kind of disappear. I just kind of eat. And it's a time in which I feel like everything's OK, actually. While I'm eating, while I'm putting stuff in my mouth, I feel like everything's OK, but I'm kind of not really there.

Susan Burton

Yeah. How do you feel right after?

Audrey

Oh, god awful. Awful. Another day ruined. I mean, and yes, I have felt hopeless. I have felt extremely hopeless, having done it again, and then doing it again the next night. And I felt completely hopeless and out of control of it and hating myself for it.

Susan Burton

That's pretty much the cycle. The anaesthetized feeling during the binge, the self-loathing that follows, feeling like this is out of your control, but also that you should be able to stop, and the secrecy about all of it.

Susan Burton

So you didn't tell your roommate senior year. Did you ever want to tell anyone about it?

Audrey

No. Oh, my gosh, no, I never wanted to tell anybody. No. It was--

Susan Burton

Yeah.

Audrey

I've been in therapy most of my life, and I have never told any of my therapists about this. It didn't occur to me that I would talk about it.

Susan Burton

Why do you think that is?

Audrey

I think it's just so embarrassing. And it's really shameful, and it's something that I should be able to handle by myself. I don't know. I think I just kind of blanked it out when I went to therapy to talk. It was too personal, which is bizarre. I mean, I told my therapist all sorts of personal stuff, but that was too embarrassing. And I never thought of myself as having an eating disorder. Binge-eating, I never thought of that as a disorder. I thought of it as a lack of discipline.

Susan Burton

Mm-hmm. If you had thought of it as a disorder, do you think that would have made you any more likely to talk about it in therapy?

Audrey

Yeah, if I thought it was a disorder, yeah. I mean, I'm from a doctor's family, so anything that can be in a book somewhere, I can accept. So yeah, if I thought of it as a disorder, I probably would have talked about it.

Susan Burton

Yeah. Yeah.

Audrey

You know, in your email, you talked about the movie, Eating. And I went to see it, when it came out, with a friend of mine. And we came out of the movie, and we talked about it a little bit, but not a whole lot. It was way too close to home for me. And I don't know if it was too close to home for her, but it was uncomfortable.

Susan Burton

It's so interesting. I'm so glad that you had the experience seeing that movie in the theater when it came out. You're the only person I've ever talked to who's also seen this movie, so this is very exciting for me. So what age were you when you saw that movie in the theater?

Audrey

Oh, well, it was 1990, so-- I don't know.

Susan Burton

So you're in your 30s.

Audrey

Yeah, I was in my 30s. And I remember lines from that. I saw it once, but I still remember lines from that movie. I remember there's a woman who's sitting in a jacket, and she says, I'm wearing this jacket because I don't want you to see my arms.

Woman 1

I wear clothes to conceal it. I mean, I have this jacket on because I don't want you to see my fat arms.

Audrey

And then there's the older woman-- well, she's my age now, but there's the older woman who says, I don't understand these girls. Why don't they just drink?

Susan Burton

Uh-huh.

Woman 2

Food, food, food-- that's all I hear is food. Now, I really enjoy eating, I always have. In my time, we'd get together to have a drink, or cocktails and hors d'oeuvres. I mean, that was always-- that was a more desirable invitation than going to dinner.

Audrey

And I thought, what is wrong with me? Why don't I just drink? I really did. What is wrong with me? Why don't I just drink, instead of eating?

Susan Burton

What else do you remember? Do you remember anything else?

Audrey

I remember it was really an embarrassing experience watching the movie, and uncomfortable. And the friend I went with is very lighthearted. And then we came out of that movie, and it was pretty dark there for a few minutes.

Susan Burton

Do you think she connected with it, too?

Audrey

My feeling was that she connected with it on the level of women in this culture are told not to eat very much. And she connected with it like a normal person, like a normal woman who suffers under the onus of, you're not supposed to eat too much, but not like somebody like me. But can I ask you something?

Susan Burton

Yeah.

Audrey

When you saw it with your mom, do you think your mom was already worried about you, and maybe that's why she didn't really say much about the movie?

Susan Burton

We've talked some now about my eating disorders, and she didn't know about the bingeing. And my mother probably is somewhere on the spectrum of in between eating having been really a destructive force and the friend with whom you saw the movie, who's a woman so she can relate to it on that level.

Audrey

I'm so glad you understand what I mean by that, about my friend being a normal woman worried about it, as opposed to somebody with a problem worried about it.

Susan Burton

Well, I always wanted to be a normal woman worried about it. Yeah.

Audrey

Honestly, that film drove me further underground.

Susan Burton

How so?

Audrey

Because I think because of-- now that I'm thinking about it, I think because of the judgment. It's just thick with judgment of these women and their problems. And I thought, whoa, hm, I was right. This absolutely must remain a secret forever.

Susan Burton

Yeah.

Audrey

And I don't even think consciously of-- I mean, I recently have started thinking consciously about it, but I've never even thought consciously about, gee, I'd better not tell anybody. It's like that would never in a million years have occurred to me to tell somebody.

Susan Burton

What finally prompted Audrey to tell somebody was learning that this thing she did in secret was something that many other people also did and that it had a name. It doesn't always work this way. Naming isn't always something you want.

I talked to one woman who, for years, didn't tell anyone about her bulimia because she didn't want the label. She didn't want to be saddled with shame she could never shake. As long as she could fix it herself, the eating disorder never existed in the first place. Finally, she did tell, and she did name it, which was terrifying because it made it real. But it also made it more manageable.

Another woman I talked to was also reluctant to name her eating disorder, not because she didn't want the label, but because she didn't feel she lived up to it.

Reader 4

I just didn't think I qualified. I didn't feel like I was thin enough or sick enough. The images I had in my head of eating disordered people were a very, very rail thin person wearing a hospital gown who's being force fed. That's what I thought.

Susan Burton

This ambivalence about naming was totally familiar to me. When I first went to therapy, it took me a few months to look up my diagnosis code. I was scared to know what was now in my permanent record. And when I looked it up and saw it was anorexia, I got nervous in a new way.

Like my therapist didn't understand. I wanted to take off all my clothes and show her that I wasn't thin enough to be anorexic. What I didn't get yet was that, one, you can be anorexic at any size, and two, that my feelings were the essence of the illness. I'm not good enough to be anorexic. I'm not good enough.

A name gave Audrey the words to say the unspeakable. And it gave her the permission she needed to ask for help. After Audrey realized she might have binge-eating disorder, she contacted a nutritionist.

Audrey

So I contacted her. And when I emailed it that I thought I might have this problem, I felt OK. But when I called her and we spoke, I couldn't commit. I was like, I don't know if I really have it or not. Maybe I do, I don't know. I don't do it all the time, you know? And she said, well, we don't necessarily have to name it. You may have features of it. And what I thought was, no, no, no, I have it.

Susan Burton

[LAUGHS] Sorry, I'm laughing only because I totally relate, yeah.

Audrey

I know you do.

Susan Burton

So what feels helpful about talking about it? Or what has felt helpful so far?

Audrey

What's made a difference, for me, is that it's a named problem. And it's not a failure of character, but a disorder that can be treated.

Susan Burton

Treatment for an eating disorder involves both changing behaviors and addressing the underlying emotional reasons for them. That's exactly what Audrey's doing. In the months since she and I spoke, she's continued with the nutritionist. And now, she's also seeing a therapist. She's not over this yet, but she's working on it.

That's where I am too, but I struggle with a lot of, why can't I just [BLEEP] get over it? Recently, my therapist suggested that I thought that telling my story would release me from shame. I got a little defensive. No, no, I hadn't thought that. But she was right. Telling my story has opened up a lot for me, especially with the people I'm closest to.

But telling is a beginning, not an end. It's not a solution. It doesn't fix your eating. It doesn't release you from shame. To release yourself from shame, you need to understand where the shame comes from. Telling alone doesn't get you there, but it puts you in conversation with people who can help. It gets you to the party with other women, talking.

Coming up, keeping your job secret from your children and your children secret from your job. That's in a minute, from Chicago Public Radio, when our program continues.

Act Two: Bad Cell Service

Susan Burton

It's This American Life. I'm Susan Burton. Today's program, Secrets-- stories about why we tell them and why we don't. We've arrived at act two of our show. Act Two, Bad Cell Service.

We're told that sharing our secrets will liberate us. We'll feel unburdened, relieved. But sometimes, keeping the secret is what sets us free. Writer Pavan Bivigou has an illness that she's kept secret.

Pavan Bivigou

My body has a secret. There are days when my body feels as though it is the secret. If one day you were to pay considerable attention, you might figure it out. My body's quick to breathlessness and slow to recover from exertion.

But perhaps this is too subtle a clue. If I go out drinking and neglect to take my folic acid the morning after, notice how the whites of my eyes have yellowed slightly. This is my body leaking its secret. The yellowed eyes-- this is jaundice, a common symptom of sickle cell disease, which is the secret my body has and tries so hard to keep.

Sickle cell is a blood disorder where red blood cells take on an irregular sickle shape. This diminishes the level of oxygen in the body. It can be painful. The most pronounced pain comes from the unstreamlined cells bumping and scraping along my vessel walls, producing an unbearable rusty ache in my bones, especially at the joints, which sickle cells have trouble squeezing through. And so, often, they logjam and cause swelling.

All childhood long, I was the sick girl, notable for my string of absences. I was out for days and weeks at a time due to illness, but also for maintenance purposes-- checkups, tests, transfusions. The burden of being my best friend at school was threefold. One, you had to have a back-up best friend for the times I wasn't there. Two, if we started an art project, I had to explain to you how I wanted it done in the very likely event that I wouldn't be there to do it myself. And three, you had to keep up with all the school gossip and catch me up on it in meticulous detail when I returned.

In year nine, I auditioned for the role of a dancing girl in my secondary school's production of "West Side Story." My dance teacher, who was directing, complimented my strong audition and followed up her praise with, if I give you a part in the show, dear, you better promise me that you won't get sick. I won't get sick, I told her hurriedly, without properly considering what she was asking of me. I won't get sick. I repeated it, I'm sure, to reassure myself. I won't, I won't.

The following week, the cast list went up. And I was the only year nine dancing girl to get a speaking part. It was one line, but it was everything to me. I prayed, stepped over cracks, wished on stars, did my homework early, my chores diligently, was nice to my brothers-- everything I could possibly think of to be good and stay well. I begged my body to keep the promise I'd made.

And of course, two weeks before the show, I got sick, the sickest I had ever been, the sickest I have ever been. I caught pneumonia. I was hospitalized for three months, missed five months of school that year. I believe my body did it to spite me. I was so angry, I writhed in my hospital bed in pain and frustration thinking, I'm a girl who wants to dance and say her line. I'm stuck in this body, a place that gets sick. I never auditioned for anything at school ever again.

As I grew older, I grew a bit healthier. My body calmed down. I went two years without hospital admission, then five, then eight. Then I mostly stopped speaking about sickle cell and the bad blood that moves inside me. I convinced myself that discussing it would somehow jinx me into more suffering. If I kept quiet about my body, my body, in turn, would keep quiet about its disease.

I moved through the world less a sick person and more as a person with a sickness. That distinction became very important-- a loophole. I never lied, I neglected to tell the truth. That's how secrets are made.

My secret allows me to control how people see me. I remember revealing the truth to a co-worker at a bookstore. And after that, he attributed every stumble, every dropped pencil to my sickle cell. I hate to be pitied. Pity says, I'm glad I'm not you. Pity says, I'm glad I do not have to struggle with what you do. Pity feels bad for me, without giving me a chance to feel anything for myself. Keeping my secret is the one thing about my body I can control.

People would sometimes find out, but it was rare for me to actively tell. My husband is the only person I can remember sitting down to explain. I tell my body's secret only when it is necessary, when it is apparent I'm becoming sick, or when it's a safety concern, like when I fly long distance, because I'd heard that high altitude can trigger a crisis.

Years ago, a doctor got me in the habit of taking this precautionary measure. Before the seatbelt light switched on, I walked to the front of the plane and hushedly confessed. The first time I did this, my head swam. It had been so long since I'd said, "I have sickle cell," out loud to anyone. Now, I accept this unburdening as part of my flying ritual. Because it's temporary, the secret remains in the air and dissipates as soon as I land at my destination.

Another place I was sometimes OK talking about my sickle cell was in avowedly Black spaces-- home, church, with extended family that wasn't really family. It is our disease, so it's our problem. One theory is that the gene mutation in the hemoglobin evolved to resist malaria. Most people had a cousin back home who had suffered, an aunt's friend of a friend who died from it.

There was a heavy knowing in these diasporic circles. They understood the specific frustration of being in a body that had an extra thing to contend with. They'd jokingly quote that line from Full Metal Jacket at me-- "Thank god for the sickle cell"-- and I would laugh. In these spaces, I felt seen, but also hyper visible. And as I grew up, I sought out places where I could go incognito.

I have been told all my life by doctors, teachers, family friends, that I should tell, that it's the only way I will ever feel truly known. I spent so much of my life struggling with this disease, and so, of course, it has shaped me-- the way I form relationships, how suspicious I am of joy, my wholesale resignation to pain, why I hate being cold. Telling people lets them in. But the problem is, I know who I am. I'm a person who has a secret. And so, who do I become if I tell? What do I lose?

I have tried to be more open. I even wrote about my sickle cell for an online publication a few years ago. The positive feedback from strangers was encouraging, overwhelming. But hearing from people I knew felt embarrassing, exposing. Fortunately, it wasn't that many people. I went back to parcelling out the tellings, keeping the information on the strictest need to know basis. And then COVID happened.

At the beginning of it, about a year ago, I received a letter from the Department of Health and Social Care informing me that, as I have a high risk condition, I'm considered extremely vulnerable. And so I must stay out of the way of COVID by staying in my house for at least 12 weeks. Extremely vulnerable is the nicest thing a government organization has ever said about me. Extremely vulnerable made me feel dainty and precious, like a rare jewel, uniquely worthy of special care, until the reality sets in of what it would mean to spend 12 weeks inside my house.

Could I have lied for 12 weeks, told people I was staying home because I was anxious, overly cautious? Or maybe it would be easier to just tell the truth. And so, for the first time in my life, I slipped into the habit of day to day, face to face, talking about my sickle cell.

I told friends, new colleagues, neighbors, the postman. They would come by the house, stand at the front gate. I sat the mandated two meters away on the steps, and they would ask me questions. I rambled at them about bone marrow stem cells, rigid red blood cells, anemia, chest crises, increased infection risks, and how scared I was.

Everybody was so nice, so understanding and listening to me. I felt compelled by their kindness to tell, but always sicker after I told. I felt powerless, like a child again. My first adult decision was to keep my illness a secret. I spent so much of my life hiding, to give myself choices as to how I'd move through the world. And now, in revealing myself, I felt trapped.

Once, after a visit where I had told someone, I found myself playing a game I hadn't played since childhood. I lay very still on the floor, trying to pinpoint where in my body my bad blood was moving, imagining the evil broken cells swimming through vessels in my brain, heart, lungs, behind my eyes, across my belly, focusing my thoughts on pulverizing them. It didn't work then, it doesn't work now.

The most pervasive idea about secrets is that they encumber us. We're told that sharing all the parts of ourselves sets us free, but I have not felt any relief since the knowledge of my condition has become more public. The more I tell the truth to others, the less I feel like me. I would like to return to being sick in the dark.

Susan Burton

Pavan Bivigou is a writer in London.

Act Three: Mommy’s Busy Right Now

Susan Burton

Act Three, Mommy's Busy Right Now. Back in March of last year, when schools were shutting down, my co-worker Lina Misitzis saw a tweet from a mother who had a problem lots of mothers had, but a more extreme version of it. She makes porn at home. Her tweet-- quote, "I work when my kids are in school. School is on the verge of closing. It'll be difficult to make content when that happens." A warning-- the story is about someone making porn and keeping it from their kids. You might want to do the same. There's some sexual content. Here's Lina.

Lina Misitzis

Lana makes a la carte porn, short videos of herself for people to buy. And her fans can book her for one-on-one cam shows. We got on the phone in May, two months after that tweet, so, two months into her kids' remote learning.

Lana

I'm just going to escape from the teacher YouTube video for a minute.

Lina Misitzis

By the way, Lana's not her real name. It's her performer name. I asked, what is it like now that her family is always home? And she said, basically, it's been tough. The time she used to spend on her own work is now dedicated to the kids' schooling.

Lana

And then, 5 o'clock, it's just dinner, bath, and bed, as it usually is.

Lina Misitzis

Wait, are you still shooting any content from the house?

Lana

Not really. I just don't anymore because, after 9 o'clock, I just feel so exhausted now. I just can't-- I can't do it at night.

Lina Misitzis

Lana had stopped shooting, which I wasn't so surprised. But then a few minutes after we hung up, I got a text message from her. She wrote, "It's not safe for sex workers to say what they shoot at home while their kids are home." So I called her back right away. It turned out she hadn't been totally honest with me.

Lana

You asked me if I made content ever when they're home, I have to. I have to. It's like, being in the closet in your own home. And you're trying to work, and you have to deliver this media to people who have paid already for it. You're under these deadlines to make porn.

Lina Misitzis

A big reason Lana wasn't immediately upfront-- she doesn't want other moms in her world knowing what she does for work. Lana told me that's because she knows what the other moms think of her job. A couple of years ago, they were passing around a documentary about the dangers of porn.

Lana

It's vilified. It's something to be afraid of. They look at it as something that's very degrading to women. Like, I'm just degrading myself.

I really enjoy my own sexuality and being able to tap into that for other people who are looking for something really niche and specific. They don't see it that way at all. They see it as this disease. And if they see me as that, I don't know if they would continue to want to plan play dates with my daughter.

Lina Misitzis

So she's kept her job a secret, for years, from the other moms, and of course, from her own kids. Which just to say, doing your job while your kids are at home, that's one thing. Doing a secret job while your kids are at home, that's a whole other thing. And on top of that, the kids at home, they're also a secret from Lana's customers. For them, Lana has no family. She exists solely in the fantasy they're paying for.

So Lana's having to switch back and forth between these different sides of her life. Each one has to be completely invisible to the other. But she's stunningly can-do about it, very matter of fact whenever I bring up how stressful it seems. Like, it's a puzzle, a bunch of moving parts. All of them have a place, just it needs solving.

Lana

OK, so a typical morning, before any kids come downstairs, I'll shoot a small Snapchat clip. One is kind of G rated for my promotional, and the other one is adult for my premium members. So that's done in the morning.

Lina Misitzis

Then it's time for the kids to get up, get dressed. She makes them breakfast, situates them for virtual learning. By the way, Lana is married. Her husband knows about and supports her work. But because of the nature of his work, he's often tied up during the day, leaving it to Lana. So while the kids are in Zoom school, she looks for small moments when it makes sense to slip away, or when they're allowed their screen time, occupied by Minecraft or YouTube.

Lana

--or I'll even sneak off into the bathroom with the door locked, do a shower scene. Sometimes, there's some pee clips because there's a bunch of pee fans out there.

Lina Misitzis

What's interesting, actually, about most of what you just said is that it's the stuff that you'd be doing in the bathroom with the door closed and locked anyway. And you're multitasking.

Lana

Yeah, you work it in. Oh, my god, it's like every time you sit on the toilet, or something, or you turn on the shower, you're like, OK, wait a minute. Should I be shooting this? Because what section of my fans will this be good for?

Lina Misitzis

The day before, Lana said--

Lana

I had to go into the kids' bathroom, because that was the room that was the most far away from where everyone else was. And there's towels everywhere. There's an owl picture. The bathroom's painted yellow. It's just not the greatest room for porn. So I have to go in really close and speak kind of quietly.

Lina Misitzis

Lana's been careful to manage what her kids know about her job. At the time, her daughter was 11, perceptive, starting to have some questions. Sometimes, she'd notice Lana wearing something out of the ordinary beneath her t-shirt and jeans, like full body lingerie or something. And she'd ask her mom, why are you wearing that?

Lana

And I'll be like, oh, yeah, sorry, this is for work. And she'll be like, mm, OK.

Lina Misitzis

Do you think it's possible that she just doesn't know that there is more to know than that?

Lana

Um--

Lina Misitzis

Well, I don't-- I don't remember-- when do kids figure out that sexuality is a commodity?

Lana

I think that she is pretty close. She will eventually figure this out.

Lina Misitzis

Here's what Lana's daughter does know. She knows her mom has a, quote, "grown up job," which is why she has a lot of fun clothes and high heels, which she likes to try on. She knows her mom takes pictures for people and makes videos for them. And she knows that, sometimes, people like to buy her mom's clothes after she's worn them. And that's what she knows. For now, she isn't asking for more. And Lana's waiting for her to ask.

And her son, he was six when we talked. He didn't know anything about his mom's work yet. He didn't even know it was a door he could knock on. Knocking on doors, by the way, a lesson he should probably learn sooner than later. One time, Lana told me, she snuck off for a quick cam show.

Lana

I went upstairs. I forgot to lock the door. And I had just pulled down my leggings, still had my underwear on. And my son started walking up the stairs. And I'm on camera already, and I had to pull up my pants really fast. And I'm like, hey, what's up? And it's like, my Kindle's not working. And it's like, oh, my god.

Lina Misitzis

It worked out fine. Lana put the phone down before her son even walked into the room and met him out in the hallway. Actually, almost the exact same thing happened on our phone call, too.

Lana

Hold on one moment. What, baby?

Son

Can I have some more Kindle?

Lina Misitzis

She gave him more Kindle. It's not just her kids looking for more screen time, it's also her clients. When the pandemic started, porn consumption in America shot up-- way up. About 25% more streaming, according to the website Pornhub, especially in the middle of the day at around lunchtime-- presumably, people stuck at home.

Lana saw an uptick in her fan base, too. Last spring, she told me she'd gained about 8,000 followers on social media and that she was getting more and more requests for private shows.

Lana

Everybody right now is at home with their families. And so, men will be working from their home office, and they'll contact me and say, hey, can we do a five-minute cam session?

Lina Misitzis

Like Lana's doing in her house, these clients are fitting in what they can, when they can, from their houses, many of them hoping it'll go unnoticed.

So that was early in the pandemic, May. Every two or three months, I'd check back with Lana. And every time we'd catch up, she sounded upbeat. And I think, this woman is so good at compartmentalizing. But when I called her back a couple of weeks ago to check in, she sounded different. And she told me she's been having a hard time keeping up her porn persona with clients.

Lana

It's hard to stay motivated, I have found. And it kind of takes a little bit of time to kind of get going and to get in-- I'd have to put on music. I have to sort of get in the mindset to actually create something that's good.

Lina Misitzis

Some things are easier these days. Her kids don't need so much attention during the day. Lana's daughter is old enough to manage her own virtual learning. And her son-- he's seven now-- he's in a small pod with other kiddos his age. Four days a week, he's not at home.

Lana even rented a small office for work where she can go spend a few hours each morning shooting by herself. So she has more privacy and doesn't have to toggle back and forth all day between her kids and her secret job anymore. But the pandemic's been getting to her in some new ways.

Lana

There's, I think, a lot of little things, like the gyms being closed and I'm not taking care of my body as well as I did before the pandemic. And so, I feel like my body looks different now, and that makes you not feel quite as sexy when you're looking back at the footage later. And you're like, wow, I really don't like that angle. And so I find myself sometimes just having to bust out content, not because I'm feeling it or because I think this is going to be really great, but it's like, I have to get it done.

Lina Misitzis

Actually, Lana says, the hour-long foot worshiping session that she'd done just before this phone call is a good example of what she's talking about. That appointment happened over text. She also sends photos.

Lana

So I'm actually texting with him. And then I'm also looking for a restaurant reservation because I really want to go out to dinner this Friday for outdoor dining. [LAUGHS] And I'm texting with someone else.

Lina Misitzis

Did you get your reservation?

Lana

No, because I have to find a place with heaters and a full bar, and that is a tricky combination right now. [LAUGHS]

Lina Misitzis

Like lots of us, Lana's worn down, having less fun on the job. And honestly, who can blame her? But since her whole job is to get other people in the mood, when Lana's not in the mood, that's a different kind of secret, one she can't afford to tell.

Susan Burton

Lina Misitzis is a producer of our show.

[MUSIC - "SECRETS" BY MARY LAMBERT]

Credits

Susan Burton

Our program was produced today by me, Susan Burton. The people who put our show together today include Bim Adewunmi, Elna Baker, Dana Chivvis, Sean Cole, Aviva DeKornfeld, Hilary Elkins, Damien Graef, Seth Lind, Tobin Low, Miki Meek, Lina Misitzis, Stowe Nelson, Katherine Rae Mondo, Nadia Reiman, Ari Saperstein, Laura Starcheski, Lilly Sullivan, Christopher Swetala, Matt Tierney, and Julie Whitaker.

Our managing editor is Sara Abdurrahman. Our senior editor is David Kestenbaum. Our executive editor is Emanuele Berry. Special thanks today to Neda Frayha, Andy Lee, Mark Spiegler, and to all the women who trusted me with the stories of their eating disorders. The book I talked about, my memoir, it's called Empty.

Our website, thisamericanlife.org, where you can stream our archive of over 700 episodes for absolutely free. This American Life is delivered to public radio stations by PRX, the Public Radio Exchange. Thanks, of course, to my boss, Ira Glass, who took the week off to devote himself to his true calling, Star Trek fanfiction. He finished two stories.

Lana

One is kind of G rated for my promotional, and the other one is adult for my premium members.

Susan Burton

I'm Susan Burton. Join us next week for more stories of This American Life.

[MUSIC - "SECRETS" BY MARY LAMBERT]