Living Sick and Dying Young in Rich America
Chronic illness is the new first-world problem.
We were standing at Target in an aisle we’d never walked down before, looking at things we didn’t understand. Pill splitters, multivitamins, supplements, and the thing we were here to buy: a long blue pill box—the kind with seven little doors labeled “S M T W T F S “ for each day of the week, the kind that old people cram their pills into when they have too many to remember what they’ve already taken.
My husband, Joe Preston, shook his head. “Do I really need this?”
I grabbed it off the shelf and threw it in our basket. And when we got home, Joe—then a fit and fairly spry 30-year-old man with a boss-level beard—stood at the kitchen counter, dropping each of his prescriptions with a plink into the container.
I guess it’s true that life is full of surprises, but for the three years since Joe’s crippling pain was diagnosed as the result of an autoimmune disease called Ankylosing Spondylitis, our life has been full of surprises like this one. Pill boxes, trips to the emergency room, early returns from vacation. Terms like “flare-up” have dropped into our vocabulary. We’ve sat in waiting rooms where Joe was the only person without a walker or a cane. Most of our tears have been over the fact that these aren’t the kind of surprises either of us thought we’d be encountering at such a young age.
But here’s the thing: We recently realized we weren’t alone. Almost all of our friends are sick, too. When we met our friend Missy Narrance, Joe found solace in talking to her about his health. She’s 29 and has been battling lupus and fibromyalgia for the past 10 years. She’s been through chemotherapy twice, and her daily symptoms are so extreme that she was granted federal disability status when she was just 23 years old. In our close group of friends—who range from 25 to 35 years old—we know people with everything from tumors to chronic pain. Sometimes our conversations over beers on a Friday night turn to discussions of long-term care and miscommunication between doctors.
I thought this would be the time when we’d be preparing for the rest of our lives: earning money, going on fun vacations, having families, building our careers. And we are, but at the same time, we’re doing it while we’re trying to manage pain symptoms, chase down prescriptions, and secure stable health insurance. When I was in college, I remember being prepared to survive in the workforce, but I don’t remember a class that told me how to do that if half of your household is in so much pain on some days that they can’t get to work. I’m barely over 30. I thought I had so much more time before I had to think about this stuff.
I wondered if this was normal. Do we know so many people who are dealing with pain because people are just getting sicker in general?
I found out that they kind of are. It turns out that chronic conditions like what Joe and my friends are dealing with are one of America’s biggest health emergencies. And it’s one that many people say we’re not prepared to deal with.
Despite the fact that America shells out more money on healthcare than any other country in the world, according to a report by the Centers for Disease Control and Prevention—and a hefty 75 percent of those dollars are going toward aiding people with chronic conditions—almost half of American adults had at least one chronic condition in 2005.
Not surprisingly, the CDC says cancer is still the second leading cause of death for Americans. But not only do chronic conditions—a category that includes everything from autoimmune diseases like arthritis and lupus, to obesity, heart disease, and diabetes—claim the number one spot, they’re compromising Americans’ quality of life and disabling people for long periods of time. Take arthritis for example: Right now, the CDC says it affects 1 in 5 adults, and is the most common cause of disability in America. “As the U.S. population ages, the number of adults with doctor-diagnosed arthritis is projected to increase from 46 million to 67 million by 2030, and 25 million of these individuals will have limited activity as a result,” the CDC report reads.
But it’s not just that Americans are getting sicker—it’s that young Americans are getting sicker. A 2013 report by the National Research Council and Institute of Medicine (NAC/IOM) echoes the shock of that fact. “The panel was struck by the gravity of its findings,” it reads. “For many years, Americans have been dying at younger ages than people in almost all other high income countries.”
Steven Woolf, director of the Center on Society and Health at Virginia Commonwealth University, helped prepare the NAC/IOM report and brought the findings before the U.S. Senate last month during a discussion on what is ailing Americans. In particular, Woolf points at how data is painting a bleak future for American women.
“Women are less likely to live to age 50 if they’re born in the United States than other high income countries,” he says. “I have a chart where we show this pattern going back to 1980. Back then if you looked at the survival of women to age 50, the U.S. was in the middle of the pack. Over time, not only has the U.S. fallen down in the ranking, they’ve fallen off the chart. That’s something we’re trying to understand.”
And don’t be mistaken, Woolf says: The United States’ outlook isn’t skewed from other countries’ because of its diverse people and massive disparities in socioeconomic status. “We analyzed the data by a variety of social classes and have found that the problem is pervasive. Rich Americans die earlier than rich people in other countries. College-educated people die earlier than college-educated people in other countries,” he says. “It’s misguided for people who are better off and doing well to think that this is someone else’s problem.”
“It’s very concerning,” Woolf says. “We are living shorter lives than people in other countries. We’re sicker than people in other countries.”
In fact, a recent report by the University of Washington’s Institute for Health Metrics and Evaluation, says that “in some U.S. counties… life expectancies are on par with countries in North Africa and Southeast Asia.”
Having a sicker population, Woolf points out, means a sicker economy and a sicker future for the U.S.
“In terms of the economy… this means that American businesses are at a competitive disadvantage with other countries because their workforce is sicker. This doesn’t bode well [for] the next generation’s well-being in terms of health and life expectancy.”
It’s noon on a Thursday, and my friend Missy is sitting in her pajamas. For the past six years since she was put on disability, this is what her day-to-day life has looked like. She draws and paints compulsively, holed up in the tiny room she shares with her boyfriend in a house with four other people. She watches a lot of documentaries, and she sleeps constantly.
For her, discovering she had lupus and fibromyalgia was a weight lifted off her shoulders. Ever since she was in junior high and discovered swollen lymph nodes under her arms, she ping-ponged between doctors and different diagnoses. Being sick meant that she missed her last semester in high school. She watched her friends fall away as they worried about prom, and she worried about chemotherapy. She told any guy that wanted to date her that if they wanted to leave because she was sick, she understood.
She grappled with constant guilt, thinking that maybe she wasn’t really sick—that she could bite the bullet and be a productive member of society if she tried hard enough. So when she found out that her condition had a name, it was a relief.
“That’s the thing that a lot of people with chronic illness go through. When they finally are diagnosed … it is so relieving,” she says. “Because you have likely been questioned by people about your health and about your symptoms, therefore you’ve questioned yourself about your symptoms and [felt] some sense of guilt. Or [thought], ‘Maybe I’m wrong. Maybe I’m not really experiencing what I’m experiencing.’”
“And so when someone else finally comes in, who knows what they’re talking about, and is like ‘You’ve had these illnesses and you’ve been dealing with these symptoms,’ it’s so relieving. It’s like, ‘God. Thank you. Finally. Thank you.’”
Dr. Enrique Jacoby, regional advisor for healthy eating and active living for the World Health Organization (WHO), says people like Missy and my husband Joe might just be victims of the American lifestyle.
“We’re sicker for a number of reasons. Not one single factor is to be blamed for the problem,” Jacoby says. “One of the reasons is we are eating bad. We are being excessively exposed to junk food… We have more pollution because of biofuels that are really, really bad for you.”
He points to the way American cities have grown so large that people are almost required to drive everywhere instead of walking, which means most people aren’t getting anywhere near the right amount of exercise. Jacoby says that 100 years ago the most popular public spaces were parks and plazas—places that encouraged exercise and social interaction. Today, they’re roadways.
I ask Jacoby: Are my friends sick, by chance, because they grew up eating Spaghetti-O’s and Kraft macaroni and cheese like every other kid in the 1980s? Are they victims of an era driven by convenience foods and sugary drinks? (Joe’s father was a Pepsi salesman.)
“Anyone that lives on mac and cheese, a lot of this packaged food, probably will grow up in one way or another addicted to this type of food. It’s well-known that there is very clear evidence that packaged foods are designed to be addictive,” he says. “Do you know anyone who is addicted to chicken or fish or celery? That doesn’t exist.”
While Missy and Joe both possess certain genes that allow them to have these diseases, Jacoby says dependence on processed food as children might have been what brought them to the surface. And it might be the story behind what’s happening to so many Americans.
So, according to this theory, our genes aren’t really changing, but they’re confused. “It’s not going to be an immediate genetic change in society, but what we’re experiencing is that our genes’ expression is being, in a way, modified,” Jacoby says.
It might be that our lifestyle is why Americans are so sick. Another theory, according to Dr. Frederick Miller of the National Institute of Environmental Health Sciences, might be that humans are being weeded out in different ways than in the past, as more communicable diseases have been eliminated.
“If you do away with the infectious disease risks that perhaps killed off a number of individuals early in life [in the past], people who may have altered immune systems, who perhaps couldn’t have handled [those infections, then] go on in adulthood to develop these diseases,” he says.
He points to the “hygiene hypothesis”: As humans have eliminated infections and led cleaner early lives, allergies and autoimmune disease incidences have increased because of our underdeveloped immune systems. “It’s not completely proven, it’s a hypothesis,” Miller says, “But it is consistent with some of the data out there.”
“There may not be too many free rides in this world,” he says. “As we move away from one disease, we may be moving toward other diseases.”
My husband says he’s lucky. Not because he’s sick, but because it could be so much worse. Joe still holds down a full-time job as a creative director at an advertising agency. He’s still able to play drums in his band.
And, in some ways, he’s just started dealing with his disease. For a long time, he didn’t even want to go to do the doctor to see if something was wrong with him. He’d been diagnosed with Juvenile Rheumatoid Arthritis when he was in elementary school, but that went away when he got older. He figured this pain might just be a new version of that.
“But then at some point I complained enough when I wasn’t paying attention,” he said to me one night as we sat on our couch with a tape recorder rolling. “I complained enough times, [then] you said something enough times, to where I finally decided to go back.”
He says he remembers thinking “if I go and it does turn out to be something, then it’s something I have to deal with.” He was young, after all. Could there really be a problem?
Since he’s been diagnosed, he says he’s done a lot of thinking about how he never expected he’d be dealing with a disease at this point in his life, and how that’s become a polarizing factor with other people our age that aren’t sick.
“It’s, like, I’m still only 33. I probably am still considered in a lot of people’s eyes [to be] youthful enough that I shouldn’t have to deal with thinking about this kind of stuff,” he says. “I feel like my parents were still partying and drinking beers [at 33]. This is the age my Dad was when they had me. I don’t think [he] was worrying about what fucking pills he was going to take or not take, you know what I mean? They were like ‘We’re out of Budweiser.’”
Miller says that when young people are dealing with chronic conditions, it can have a huge impact on the economy, health care system, and the formation of future generations.
“One of the unique things about autoimmune diseases, as opposed to cancer, is that these are more likely to be long-term,” he says. “You’re not just dealing with the immediate problems, but the entire lifelong implications of that.”
It’s a fact that the Institute for Health Metrics and Evaluation noted in its report: “Diseases of poverty, such as communicable, maternal, nutritional and newborn causes, have decreased universally while non-communicable conditions traditionally associated with wealthier countries have risen,” it reads. “As people live longer and die at lower rates, the number of years spent living with disability… has increased.”
Woolf says there is still much research to be done into what’s causing Americans to be so sick. But he says this future we’re headed toward is preventable.
“We’ve known for many years what needs to be done about this,” he says. “The problem is not a lack of knowledge about what to do, but a lack of resolve and resources for how to do it… For each [issue], there are major blue ribbon reports that have outlined precisely what needs to be done about it.”
So why hasn’t it happened?
Woolf says that legislation to create a healthier America—from improved nutritional quality of food to taxes on soda—is seen as an affront to personal liberty. “A willingness to implement public policies … often involves higher taxes that American taxpayers don’t want to spend, or a willingness to change personal freedoms.”
“We can still have a free society but accept some limits on what we do to try to promote good health,” he continues. “There’s such a visceral reaction to what is perceived as a nanny state … or what people think of socialized welfare states, that any semblance of that tends to get rejected.”
Right now, he says that so much research about American health—particularly women’s health—is very new.
“I just think it’s something that hasn’t been widely disseminated,” he says, pointing to the NRC/IOM report “Shorter Lives, Poorer Health.” “The general media … haven’t been briefed about this sufficiently.”
And because of that, people aren’t ready to make healthy, infrastructural changes.
“It might be that we as a society make an informed decision that, yeah, we may pay the price for it in terms of poor health, but we get to live our lives the way we want to,” he says. “I feel that that’s okay, as long as we are making that choice as informed citizens. The problem is that I don’t think that the American public knows that that’s happening, or that American parents know that their kids will live shorter lives than in other countries.”
Jacoby, of the WHO, agrees, saying chronic conditions have become a top priority for his organization. “Chronic conditions are really, really stealing lives.”
Back at our house, Joe and I have been talking for hours about his condition and how it affects his daily life. I’ve been crying for most of the conversation, especially when we talk about the future. We talk about how our friend, Missy, can’t leave her house much. Catching someone’s cold could sideline her for weeks. Even fluorescent lights in grocery stores start to make her sick to her stomach.
We talk about how we hope that Joe never has to stop doing the things he loves because of his condition.
“I’m just sad for other people that they can’t do more. That would be the tougher thing. At least, I have very little that I can complain about,” he says. “But in the same breath, the thing that worries me about it, is that it would be one thing if I was 50 or 60. But I’ve got a long time to get worse. Time can be a friend and an enemy, I suppose. That’s just life, I guess.”