Misdiagnosis: Reproductive Health and Our Environment
It is winter in New York City. I wake up sweating in the middle of the night, and I can't sleep because I'm too hot. The night sweats wake me several more times before my alarm finally goes off at 6:30 a.m. In the morning I'm anxious; this shouldn't be happening so frequently.
The winter advances from the isolated weather of January into the endless darkness of February and March. It's been three months since I stopped taking birth control pills to regulate my fickle cycle, and my period has not returned. In the middle of the day, a flash of heat spreads over me, starting at the back of my neck, crawling over the back of my head, and ending on the other side of my body, between my rib cage and stomach. A cold chill immediately follows. I add this to a growing list of concerns to share with my doctor.
Nothing can prepare you for being told in your twenties that your reproductive system is similar to that of a fifty-year-old woman, your ovaries have shrunk to the size of raisins, and you most likely will never again have another menstrual cycle. I was twenty-eight when a gynecologist told me that I had something called premature ovarian failure (POF), a reproductive disorder affecting one percent of women in the United States. POF means that your body lacks sufficient eggs to produce regular ovulation or menstrual cycles. According to many doctors, it is unlikely that anyone with POF will ever become pregnant and carry a fetus to full term.
Our world is besieged with pollutants. Exposure to toxic contaminants cuts across race and class lines, and every being is vulnerable to environmental hazards. In a recent interview, Dr. Elizabeth Guillette, an associate research scientist in anthropology at the University of Florida, told me that the best way to deal with the impacts of pollutants on our bodies is to limit our exposure to them.
Yet few working-class and working-poor people of color have any such choice. Typically, we work in industries where we are exposed to environmental toxins as farmworkers, factory workers, domestic workers. The increasing assaults on immigration and decreasing federal worker-protection laws limit our opportunities to deal with our concerns through federal regulatory agencies. Our neighbors are the waterways, power plants, and waste facilities poisoned by the government and corporations. And our exposure to toxins is having disastrous impacts on our reproductive systems.
Farmworkers who formerly worked on the North Shore of Lake Apopka -- one of the most polluted lakes in Florida and the location of two Superfund sites -- have been suffering from chronic health problems ranging from reproductive disorders to lupus since the closing of the farms in 1998. In a 2006 community health survey of former Apopka farmworkers, most of whom were African American, 13 percent said they had a child born with a birth defect; 21 percent had at least one problem pregnancy; and 16 percent had miscarriages. At least three farmworkers who became pregnant while working in the same Immokalee labor camp in southwest Florida in 2004 gave birth to children with severe birth defects. The farmworkers contend that they were in the fields during and shortly after pesticides were sprayed -- both prior to and during pregnancy.
We are seeing increased rates of endometriosis as a result of exposure to dioxins, toxic chemical compounds produced by various industrial processes. According to Dr. Elizabeth Lee Vliet, who runs a holistic women's health practice, women are increasingly being diagnosed with early menopause, early onset of menses, delayed menses, and increased miscarriages. They are also giving birth more and more to children born with severe physical deformities. We are also seeing more women with polycystic ovarian syndrome (PCOS), the most common cause of female infertility. And, Vliet told me, "There is research that shows that PCOS is higher among [Latina] and African American young women. I don't know if the research at this point gives us a clear indication of why that is."
In her book, It's My Ovaries, Stupid!, Vliet describes how endocrine-disrupting chemicals and persistent organic pollutants (POPs) -- found in our environments at work and at home -- affect our bodies and lead to an assortment of reproductive disorders. According to Vliet, few studies have been conducted to understand the immediate and long-term impacts of these chemicals on our reproductive health.
Yet reproductive health -- and the connection between reproductive health and the environment -- has not been a top priority of the predominantly white mainstream reproductive-rights movement. Even radical reproductive-justice groups led by women of color have not placed these concerns at the top of their agendas. When we spoke recently, Loretta Ross, director of the national reproductive-justice network SisterSong, admitted that SisterSong lacks a clear policy on the intersection of environmental justice and reproductive justice. To explain, she cited a recent Tides Foundation report about the dearth of funding for women-of-color-led reproductive-rights organizations. Only nine percent of dollars earmarked for reproductive-health and reproductive-rights funding serve women of color. Even less money goes to groups led by women of color. These groups just don't have the capacity to deal with environmental justice and reproductive health right now. Another concern -- and possibly the one that presents more obstacles -- is how to come up with a cohesive policy that would not violate existing laws designed to protect workers from sex-based discrimination. Ross says she would like to begin dealing with this topic in the coming year by beginning long-overdue discussions between environmental-justice and reproductive-justice groups.
The trees and sky are zigzagging around me, missing me, avoiding my gaze. It's a perfect spring day. In my doctor's office, holding my partner's hand, I suddenly know it's bad, far worse than anything I could have imagined.
I say, "So I'm premenopausal." My doctor responds, "No, I'm sorry, you are postmenopausal." I begin to panic. I ask if I will be able to have children. She says no. All of a sudden it's as if something has torn down my throat and picked out my heart. I feel sick and begin to silently cry. I ask again about having children, hoping the answer will be different, and she says, "If you want a child, your only option is an egg donor, which costs about ten thousand dollars, and an in vitro fertilization procedure, which costs about ten thousand dollars -- but I could give you a discount and make it seven thousand."
I am astonished. An hour ago, I was a twenty-eight-year-old with choices about becoming a parent. Getting pregnant -- being a mother -- wasn't even something I necessarily wanted to do (and I certainly don't think it is the inevitable or best path for every woman). Yet I wanted to be the one to make that choice for myself. Now my chances of biological motherhood are reduced to a procedure that is unaffordable and unwanted. I notice the greed in my doctor's eyes. I ask her again if there's any chance at all that I could have my own biological child. She looks at me and says, "No. Besides, even if you could, why you would want to pass this on to your daughter?" And I think, Well, she has a point. Wouldn't that make me the worst mother in the world? Isn't that just what my mother did to me?
In 1967, six years after my mother and grandparents left Cuba, my grandmother was diagnosed with ovarian cancer. As recent immigrants to the United States who had fled Castro's Cuba, my family held a privileged position unlike that of other immigrants; we were given gifts like operations and food stamps, and my grandmother received an operation that saved her life. At age fifteen, my mother had her first period. Her cycle was never regular, and at age twenty-one, after marrying my father, she was diagnosed with POF. In order to understand where we are and where we are going, we need to know where we come from.
I grew up in a working-class community where the main roads were lined with one strip mall after another. Every other week, my mother bought us bread and desserts from the Wonder Bread thrift store. She was pleased because on her limited budget she could buy enough bread to make lunches for the two daughters she was raising alone. As a child, I found the store to be a sugary fantasy of processed bread and sweets. In hindsight, the Wonder Bread store embodies my childhood diet and lack of food security. We bought groceries at the cheapest stores possible. The food we ate was processed and pesticide-laden. We had unlimited access to potato chips, soda, and ice cream. I would cook Cheerios in butter as an afternoon snack when I was in elementary school. In junior high, I ate ice-cream bars for lunch. My mother didn't purposely seek out processed food; she bought food that fit her budget.
Dr. Vliet has researched the presence of hormone-disrupting additives in soft drinks, chips, and cookies, including a common chemical called hydrolyzed vegetable protein (HVP), which is one of several excitotoxins that overdose our reproductive systems. In It's My Ovaries, Stupid!, she writes, "It is hard to find something that doesn't have HVP! It is in protein drinks Ã¢â‚¬Â¦ cereals, frozen dinners, diet meals Ã¢â‚¬Â¦ sauce mixes, soups, salad dressings, diet-drink powders Ã¢â‚¬Â¦" She is "convinced that excitotoxins hitting the brain in the womb, in infancy, and in childhood play an insidious role in the development of ovarian dysfunction, including PCOS."
Vliet began writing books about toxins and reproductive health because information about the relationship between ovarian decline and environmental chemicals wasn't getting out to the general public through clinical practice -- because, she suggests, the companies that make products containing toxic chemicals spend lots of money trying to diminish research like hers. But Vliet is hopeful that new information on declining reproductive health will compel women to action: "My perspective as a physician is to be a strong patient advocate Ã¢â‚¬Â¦ We cannot depend on doctors to fix everything."
Guillette, the research scientist, offers specific advice about what people can do to protect their reproductive health: "Limit your exposure. If you have to live near a dump site or a polluting factory, then you want to eliminate other sources. Follow [the precautionary principle] when preparing foods by peeling certain foods like apples and cucumbers and eliminating foods high in pesticides such as strawberries." Vliet concurs: "Every woman needs to know what [she] can do to reduce her load of exposure to these chemicals."
But many recent immigrants and working-poor families cannot provide their families with enough food to survive, let alone choose to avoid certain foods based on potential contaminants. Natalie Freeman, associate professor of environmental health at the University of Florida, was part of a team that conducted another study addressing environmental-health issues in and around Lake Apopka. She says that for the families interviewed for the study, concern about environmental issues is an unaffordable luxury. Their immediate concerns are immigration status, lack of basic health and dental care, and neighborhood safety.
Toxics affect all of us, but the ability to deal with the health problems they create is a class-based luxury. Even when we do have access to doctors, it is unlikely that they will ask the right questions. They need to be educated to ask us about the industries we work in and the communities we live in. Still, having access to doctors in our communities is only part of the picture. We need to have grocery stores in our neighborhoods that offer healthy fruits and vegetables, grains and breads without preservatives, and more.
Healing is a radical concept.
In the United States, we are alienated from our own bodies by social and cultural norms. Further, many of us work two or three jobs without benefits in order to survive; few of us have access to adequate health care; and we have little time to care for ourselves and our families. The struggle to survive eclipses all things, and our collective stress is enormous. But we cannot heal ourselves if we are disconnected from the very bodies that we must heal. Thinking about our health holistically requires that we not cut off our physiological selves from our psychological experiences. What we eat, where we live, where we work Ã¢â‚¬Â¦ each of these things plays a part in our mental, physical, and spiritual health.
In the first year after I was diagnosed with POF I was dumbstruck. I retreated deeply into myself. It seemed that everyone knew that I was a twenty-eight-year-old woman who didn't have periods, who couldn't have children, and whose health was deeply compromised. I imagined my reproductive system like a black hole, cold and lifeless. As a survivor of childhood sexual abuse, I was used to feeling betrayed by my body, but this time I felt that I was being punished for my body and its power. Author Joanna Kadi writes, "Child sexual abuse teaches us lessons about power -- who has it and who doesn't. These lessons, experienced on a bodily level, transfer into the deepest levels of our conscious and subconscious being, and correspond with other oppressive systems." In our body-memory exists not only painful experiences but the keys to understanding and a map to healing.
I listen to a voice mail from my older sister. In my family, abuse has created fissures, estranged siblings and drawn lines between us. Like soldiers, we stand on opposite sides; some of us are perpetrator sympathizers, and some of us are part of the truth-teller rebellion. Despite our estrangement, I sense something wrong in my sister's voice. I know that my father is dead.
When we speak later, she sounds sad. Shrouded in her tone is the knowledge that we've been waiting for this moment our whole lives, wondering how we would feel the day it happened. There is a collective feeling among my father's five children that comes from the shared experience of subjugation, abuse, and stolen childhoods. But there is also a knowing that he suffered too, with a childhood possibly worse than ours. I've looked at old photos of my father. As a young child he seems happy, but somewhere around age ten, I detect a subtle change in the photos: the indifference to the outside world and the wall of violence he put up around him to keep from getting hurt.
At the funeral each of his five children rises to speak. As the last one, I'm reluctant and sad. I'm angry at the damage he did to my family, to my mother, to my siblings. I don't want to get up and I don't want to say a word. Yet, I find myself at the podium in the small funeral home, looking at the faces of my family members. I meet my godmother's eyes; she cries, as she knows what he did to us. I look at my mother and the tears on her face. She loved him throughout their thirteen-year marriage and twenty-year divorce. I look at my brother. I think about secrets. I begin to tell a story, leaving out some of the details that are important to me. And then I begin to release the fear that I've felt my whole life. It is as if for the first time I can breathe without wondering what will happen next. Later I remember things about my family, my father. And for the first time in my life I decide that I want to be a mother.
Since I was diagnosed with POF in 2002, my period has come and gone many times. Over the years, I have noticed that it coincides with how I'm doing emotionally. In February 2007, two months after my father's death, my period came back. I thought of this as an opportunity to set in motion a real effort to try to get pregnant.
For years, I simultaneously thought about getting pregnant and felt ambivalent about becoming a mother. My relationship with my mother is loaded with mistrust and resentment. When I was eleven years old I swore to myself that I would never be anyone's mother. I grew up knowing about my mother's struggles with infertility, hearing the horror stories of her five miscarriages and one stillbirth. I was told how happy my parents were when they finally conceived me. My father often reproachfully reminded me how much my mother loved me and how hard it was for her to conceive me. I was indebted to them for giving me life.
I don't want that narrative to be the story of my relationship to my child. The conscious decision to become a parent should rest in a larger political context. We have to push ourselves to revolutionize how we approach parenting and the children we choose to raise.
Throughout my life, my maternal grandfather was the one person I completely trusted. He loved me, he thought I was intelligent, and he believed that I could do something more with my life than be a wife to someone like my father. In my home growing up, women were objects to be looked at and showcased. My father's binary, and deeply misogynistic, view of me was that I was either a nuisance or a sexual object. My grandfather was a counterbalance. And, despite her difficulties protecting herself and her children, my mother taught me to rely on myself and to believe that everyone deserves opportunities.
When I think about having a child, I think foremost of my grandfather and the rest of my family. I think about new generations of immigrants in the United States. I think about opening my home for a child who will have options and be empowered to make choices. I imagine that my child will get to learn from a rich community of queer folks, radical people of color, and antiracist white folks.
I am in a process of identifying and unraveling my ambivalence about motherhood. Reckoning with feelings about my sexuality and identity as a queer Latina have been just as important as acknowledging that I have been uncertain about motherhood until now. The foundation of my healing process is the acknowledgment that I know my body better than any doctor.
For some women, increasing fertility means timed insemination, intrauterine insemination, and a medicine cabinet full of fertility medications. For me, it means figuring out a way to maintain my period for more than one cycle. In February 2007 I began to see an acupuncturist. I changed my diet. I began to tackle issues in therapy about my ambivalence around motherhood. I attended a workshop led by Julia Indichova, the author of Inconceivable, who was diagnosed with POF and who, without the use of fertility drugs, was able to conceive. From her I learned to think of conception as something far larger than creating fetuses and children; it is also about rebirthing ourselves.
Nothing concrete happened for months. Yet I felt healthier, more powerful -- invincible. In August, after six months, my period came back. It was the first cycle I really tried to conceive a child. Though there have been ups and downs, in the months since I made a decision about healing my body, I have succeeded in having regular cycles. I don't know if this means that I will actually conceive a child. But that isn't the most important thing right now.
For the past four months my blood tests have indicated that my hormones are in the normal range. The doctor says that it's just chance and an opportunity to be seized upon. I agree that it's an opportunity for me to acknowledge how I've healed my body. I am certain of the interconnectedness between what I eat, my current emotional health, my childhood experiences, and the environments I have lived and worked in.
As women whose bodies have yet again become the testing labs of big businesses, we will never get back lost years of reproductive health. No amount of money will diminish the pain of endometriosis or the side effects of PCOS. Nothing can replace the fetuses lost in miscarriages caused by working in hazardous conditions. We cannot undo our painful childhoods, nor can we change the abusive family environments we were born into.
Yet we are not powerless in the face of ubiquitous environmental toxins and the damage they do to our health. In fact, the future of our communities depends on our linking struggles for reproductive health with struggles for environmental justice and struggles against abuse/violence that alienates us from our own bodies. Individually, we can make lifestyle changes. Collectively, we can urge community groups to create grassroots education programs and add these concerns to their policy initiatives. We can support local Community Supported Agriculture projects in connecting with working-poor and working-class families. And we can influence the larger reproductive-rights movement to prominently address these issues.
But instead of counting on the reproductive-rights movement to take the lead on this, we should look at the groups already taking matters into their own hands. For fifty years, farmworkers have been toiling the land near Lake Apopka's North Shore, and no one has paid attention to their health -- even though international attention was paid to the decline of the alligator population and the massive bird deaths in the late 1990s. In 2006, a report initiated and conducted by former farmworkers and members of the Farmworker Association of Florida was disseminated. The results were astounding, clearly indicating that farmworkers exposed to pesticides suffered from serious health issues, including reproductive problems. This group of former Lake Apopka farmworkers is requesting more oversight from federal and state regulatory agencies, more support for farmworker health and safety education, and access to health-care specialists. The Farmworker Association of Florida is also working with young people from the farmworker community to conduct surveys to better understand the impact to their reproductive health. The multigenerational struggle of the Lake Apopka farmworkers shows us that in order to hold big business and government accountable, more of us will have to take matters into our own hands.
The long-term survival of our communities depends on how we galvanize around the many aspects of reproductive health. If we are armed with information and we push our communities to prioritize these issues, then we can change the outcomes of our individual and collective diagnoses.
 A Superfund site is an abandoned hazardous-waste site targeted by the federal government for cleanup.
 SisterSong is a network of organizations, and some of their participating groups are indeed dealing with such issues in their communities. See, for instance, Asian Communities for Reproductive Justice and the Mothers' Milk Project.
 In the 1980s, the NOW Legal Defense Fund filed and won a sex-discrimination lawsuit against Johnson Controls. Knowing that women in their workplace would be exposed to toxins that would impact their reproductive health, the company wanted, in a supposed effort to protect women's reproductive health, to demand that women show proof of sterilization to continue employment with Johnson Controls.