We all know someone with a chronic illness. Given that 117 million people in the United States live with one or more chronic illnesses, we’re more than likely encountering someone in our workplaces, our homes, and our everyday lives who is navigating the ins and outs of sickness and the pain that accompanies it. Chronic illnesses are especially pervasive among women, and thanks to medicine’s long history of paternalism and ambient sexism, doctors regularly dismiss or disbelieve women who suffer with unexplained pain.
“In Sickness” is a weeklong series about chronic illness—and what the misdiagnosis, disdain, and marginalizing of people with chronic illnesses reveals about our culture.
This story was originally published on February 27, 2018.
What comes to mind when we think about people with serious illnesses? Typically, we envision people who are in the twilight of their lives and have lived long enough to be comfortable with meeting their maker. That’s the exact misconception that veteran journalist Michele Lent Hirsch is aiming to upend in her book Invisible: How Young Women With Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine. In her 20s, Hirsch began dealing with a multitude of different health issues, including cancer, and she realized that she felt alone. She didn’t know whether or not to reveal her medical issues to bosses, friends, and potential romantic partners because she feared that they’d be repelled by watching her face her own mortality.
In her book, Hirsch outlines how common that fear is, and the strides young people with serious illnesses take to seem normal and carefree—even as their bodies break down. In the process, she pushes against the socialized merging of youth with health and shows young people with serious illnesses that they don’t have to navigate their health issues alone. Ahead of the book’s release, Hirsch spoke with Bitch about how serious illnesses impact platonic and romantic relationships, how workplaces can better support people with chronic illnesses, and what she’s learned about how to advocate for herself at work, at the doctor’s office, and in her friendships.
You have had several serious illnesses. What inspired you to turn those experiences into a book? Were you at all concerned about being so vulnerable on the page?
I’ve had three major health issues in my 20s. I’ve had hip surgery, an anaphylaxis episode that almost killed me, and then I was diagnosed with cancer. And I just thought there must be some ways that I’m experiencing this that are very particular to my gender, my age, and my overall identity. A lot of us feel alone. I was inspired by conversations I would have at parties sometimes. They’re fun events where 25-year-old people usually don’t talk about illness, but young women would confide in me about their own difficult experiences with their bodies. There’s so many of us, and we’re all afraid to talk about it.
It is shocking how many people say, “I’ve never told anyone this, but I had surgery last year and I almost died. My friends and boyfriend can’t understand because I’m 27.” I realized that I would’ve felt better had I known that I wasn’t alone. On the book jacket, there’s a line about how shining a light on young women with illness shines a light on much bigger issues in our culture, including sexism, racism, and transphobia. What does it mean to be a young person in a body in a culture that’s obsessed with youth?
If you’ve never had a serious illness, I hope there are aspects of the book that will make you think about your own interactions with people and their biases.
Your book begins with a scenario that involves dating. Was that purposeful? If so, why?
For a lot of people in their 20s, dating is at the top of their minds because they’ve been conditioned to think that they should want sex and romance. You’ve been taught that it’s very important to stand out and “look your best.” That’s where it all starts to converge with health and what we think a young woman should look like.
As I started talking to people about their stories and thinking about my own experiences, [I realized that] so much of what we think about our bodies is tied up in what we think other people will perceive about our bodies. Of course, as a feminist and an angry woman in America, I wish that weren’t true. I wish I felt all of these beautiful things about my body on my own, and I didn’t need someone to validate me. But looking at dating and sex got to the heart of those issues. Even when you consider yourself a feminist and you’re dating a feminist or ally, there are still so many forces in your relationship that you can’t control. In the chapter about doctors and the medical establishment, I quote Alondra Nelson, an incredible writer and academic. She says that when you’re in the doctor’s office, there are forces in the room before you and the doctor ever exchange a word. There’s already a power dynamic between the doctor and the patient.
She’s talking about it in terms of race, but I think that’s true in dating as well. [The power dynamic] is true in queer relationships, too. There are more people coming out as asexual or aromantic, so I don’t want to give the impression that every woman in their 20s wants to date or have sex because that’s definitely not true. I started the book with sex and relationships because it gets at so much of what it’s like to be a woman, but the rest of the book doesn’t hinge on romance and sex. There are so many other ways to experience your health, your body, and your insecurities that have nothing to do with that.
One of the striking stories in the book comes from Vita, a straight, half-Mexican woman of color who is diagnosed with multiple sclerosis at the age of 23. Her crush left her when she revealed her diagnosis. How common is that story? And what does it reveal about the stigma that young women with chronic illnesses are navigating while dating?
The statistics I found were quite staggering: Men in hetero relationships are much more likely to leave women [who have serious illnesses]. If a woman is with a man with an illness, she’s no more likely to leave than a couple where there are no illnesses. I could’ve written 50 more pages just on that. From what I saw, [women with serious illnesses being abandoned] is a significant issue because the current studies clearly point to a gendered difference. In the book, I pull in statistics about men leaving women because most of the research is focused on heterosexual relationships, but there’s a lot more quantitative research that needs to be done. I’m sure there are women who’ve left men and I’m sure there are women who’ve left women, but the overwhelming feeling from statistics and anecdotes is that it skews toward men leaving women.
I’ve been thinking about it for years. In some ways, my career is much more important to me than whether a guy I’ve been on two dates with in my 20s decided not to commit to me because I have an illness. I can say that rationally now, but when I look back at those moments in my 20s, it felt like the man I was on a date with could invalidate my whole existence. It’s very embarrassing to admit because I don’t want base my self-worth on what men think, but we have been conditioned that way. A lot of that chapter was me fighting against that conditioning.
One of your bosses told you that you needed to “leave your cancer at the door.” What do we need to do on the state and federal level to legally protect people with serious illnesses in the workplace?
There is the Americans with Disabilities Act, but it doesn’t cover everything and sometimes changes what it covers. While interviewing people and reflecting on my own experiences, I realized that I wasn’t even really aware of the ADA when I was in these workplace situations. Even if someone had talked to me about it, I couldn’t be sure my conditions would’ve been protected by the ADA. The ADA is valuable legislation that has saved people’s lives and their livelihood. For instance, it has made sure there are accessible entrances so people can go to work or see a performance. Yet there’s so much work to be done to actually protect people every day.
There should be more legislation on the state and federal level, but we also need to teach people to have more empathy [for people with disabilities and illnesses]. In that sense, it’s similar to a lot of the other gigantic social problems, civil right issues, and civil liberties in this country. People who want to make change are always debating whether we need to change laws or change people’s hearts and minds. We need both. I wish I’d been more informed about my rights. I wish I’d felt less powerless. But I don’t know if legislation or a conversation would’ve fixed that.
Recently, The New Yorker published a satirical story about all the things that startups have instead of human resources. What role does human resources play in protecting people with serious illnesses?
It’s complicated because HR can be helpful, but there are also HR horror stories. Beyond the scope of my book, HR has covered up sexual assault and sexual harassment. They’ve protected the man in charge instead of the woman who’s making an accusation. HR departments have helped companies fire people who’ve had cancer. In my experience, I was thankful that HR was there to help me [through a serious illness]. Of course, that makes me think that every company should have an HR department, but there are also people who weren’t protected by HR. Ideally, HR would protect every worker, but it doesn’t seem to work that way. I wish I had HR when I was at a company where there wasn’t one, but that doesn’t guarantee it would’ve protected me.
HR would be helpful in scenarios when you’re negotiating directly with your supervisor about really difficult things, like taking off an extra day to go a doctor’s appointment. You might not realize how difficult it is to take three hours off for lunch instead of one hour when you’re afraid that you’ll be judged for not working as many hours. Every person I interviewed for the book said that they overcompensated at work. They’re saying, “Don’t worry. I’m working until 10 p.m. tonight because I need accommodations for my disability or I had a doctor’s appointment.” That’s very unhealthy. We need workplaces that recognize that someone who has an illness or disability doesn’t need to work an extra six hours every night to prove they’re working hard.
When there’s no HR, it feels like your boss always has the upperhand, and there’s no one there to hold them accountable. I would love to meet with some HR organizations and talk to them [about workers with serious illnesses] because if you work in HR, but you’ve never experienced illness or considered that a young person might be ill, it could be helpful to talk to someone who’s been through it. I hope the book leads to some conversations about these issues because a lot of people are putting in extra hours and extra energy because they’re afraid that they’ll be fired or never get a promotion because they have a health issue.
Changing hearts and minds has to begin on an intimate level in platonic friendships. What is it like to be the only person with a serious illness among friends? And how can friends without illnesses show up for those who are navigating a serious illness?
It was extremely hard being the only person in my friend group going through a serious illness. I didn’t even fully realize how difficult it was at the time. Now that I do have friends who have health issues, I can look back and see that many of my friends didn’t understand me. I still have all of those good friends from my 20s when I was sick; they’re still some of the most important people in my life. When some of my friends learned that I was writing about having illnesses at a young age, they apologized for not being more helpful back then. They said they were sorry for not knowing what to say or how to support me.
It’s difficult to know what to say. I’ve been through so much with my health and my body, and I still don’t always know what to say. I want people to know that it’s okay if you’re not saying the one sentence that will help your friend. It’s about being open to listening to them. You should really listen when a friend is saying, “I can’t believe I got this diagnosis” or “I can’t believe I was on the phone for two hours with my insurance company while you guys were out having fun.” Being a good friend in this situation requires listening instead of talking. Be there if your friend just needs to vent a little. I can’t emphasize that enough. A lot of the women I interviewed said that they were afraid of feeling like a burden in their romantic relationships, friendships, and careers. That’s a horrible feeling. Venting for two minutes about how horrible your insurance company was to you on the phone might seem like nothing, but it’s a lot better than feeling like you can’t burden your friends because they won’t understand.
There are certain things that have rubbed me and other people with serious illnesses the wrong way. There are dos and don’ts when your friend is going through a health crisis. It’s not helpful to dismiss someone’s pain. That’s always a terrible idea. It doesn’t matter if you can’t see the pain. They’re not going to talk about pain for no reason. Sometimes, people say to me, “I also once hurt my hip. It got better in a few months.” Then I have to break the news to them: This is not going away. It’s been bothering me for a decade. Again, we can all be guilty of this because sometimes, it can be helpful to talk with someone about your personal experience. A friend sprained her ankle and I told her to consider physical therapy because it helped me when I sprained my ankle. At the same time, say those things with a grain of salt because everybody’s body is different.
Also, don’t tell people how to solve their problems. A lot of people ask me if I’ve heard of acupuncture. It makes me laugh because I did acupuncture for five years. You should assess if the person seems like they don’t know what’s going on or if they’ve exhausted all of their options because they’ve tried everything. There’s a gentle and appropriate way to ask “Hey, have you tried this?” that could help the person. And then there’s the condescending and patronizing way of asking that dismisses the person’s whole history with their body and their health.
Doctors don’t take patients—particularly female, nonbinary, and trans patients—seriously when it comes to pain. What has to change in the medical field for those who are ill to get accurate diagnoses and the medications that they need?
This gets back to hearts and minds versus legislation, and how they can work in concert. There’s more of a discourse right now than two or three years ago about how doctors dismiss patients’ pain. In order for it to change, we need to talk about it more. How did we get to this point? What are some of the solutions? The first step is noticing how these absurd biases have a deep influence on a doctor’s professional thoughts about how different people’s bodies work. Even medical residents—doctors in a training phase—honestly believe that Black people feel less pain than white people. That’s so shocking and horrifying, but why do they have those thoughts? It was the way they were exposed to ideas about race and gender when they were 5 or 6. It goes much earlier and deeper than when they knew what a doctor was.
Just because that study was done doesn’t mean people in the medical profession read it. I’d be really happy to see doctors having discussions about these studies. I’m not sure how siloed off doctors are from the studies done about them. The people I know who are doctors have stories that make me wonder if we’re ever going to get out of this mindset of doctors not believing patients. These ideas are not being addressed. Doctors also need to be trained to be critical of themselves and question their own unconscious biases. It needs to be addressed at the medical-school level. How can we make sure that patients get the care and medical attention they need? It’s going to take a huge change in how we socialize people.
How have you learned how to advocate for yourself at the doctor? What are two or three steps that you take to advocate for yourself?
Asking questions even when it feels uncomfortable is one of my biggest pieces of advice. I write down my questions, and I ask any that come to mind that will give me information about the diagnosis, the medications being prescribed, and any additional treatment. Advocating for myself means not being afraid to ask a fifth question if I need to. I will admit that I sometimes say, “Oh sorry, just one more question,” because I over-apologize like a lot of other women. But even if I say sorry, I’m still going to ask that next question. I’m not going to leave that doctor’s office until I feel comfortable, I understand what the doctor found, and I know what’s going to happen next. One of the most horrifying interviews in the book is with this woman named Miriam. The doctor told her she had cancer and then left the room, which also happened to me. I had a very similar experience, and it’s a horrible feeling. Her doctor didn’t even explain the basic terminology he was using.
She knew what a mastectomy was, but many people don’t. It was only when she asked about her next appointment that he even told her that she would have to make these very large and life-changing decisions about her treatment. If she hadn’t asked questions, she would’ve known less, but even when she did, he didn’t have many answers for her. Doctors need to get a lot better because so much of advocating for ourselves is about evening out the imbalance between us and them. Make sure that you’re being listened to when you state your symptoms, though that puts the onus back on the patient instead of the doctor. Sometimes it has helped me to bring someone with me to the doctor. Having someone else in the room makes me feel like I’m holding the doctor accountable because there’s a witness to our exchange.
In the book, Brenda says that having her white husband with her makes her doctor’s appointments run much more smoothly. It’s sad, but she brings her husband because it helps. Brenda wishes that doctors would take her seriously as a young Latina woman with a visible disability, but she knows that she won’t be listened to sometimes, so she brings her husband with her. A lot of doctors are wonderful, but Brenda knows there’s often an inherent bias. I don’t want these things to have to be true. I wish we could just improve doctors. I’ve had wonderful, kind, and incredibly thoughtful doctors who take their time because they really want to help me feel better. And still, it can be intimidating being in that room with them because we put doctors on a pedestal.
What is your ultimate hope for your book? Who do you hope that it reaches?
I hope that people from many different backgrounds and experiences read this book. I hope that men read this book. So far, the people I end up telling about the book are women because I suspect that women will relate to aspects of the book even if they don’t have health issues. I hope that men and those who don’t identify as women read this book. Preaching to the choir only helps so much. We can’t make this change without men having more empathy and understanding about this issue. I hope that people who don’t have health issues will read it. Of course, I think that women and queer folks will certainly relate to the book, but I hope it reaches beyond those demographics.