David Baxter PhD
Late Founder
Many couples struggle with infertility in silence
By Jennifer Wolff Perrine
August 5, 2010
Activists say common health issue needs to emerge from shadows
Lisa scans the room for an empty seat. Save for the disembodied voices of unseen nurses summoning patients into exam rooms, the place is excruciatingly quiet. The clouds outside the floor-to-ceiling windows cast a pallor onto the walls, the furniture and the faces of some 40 women waiting at the Perelman Cohen Center for Reproductive Medicine at NewYork-Presbyterian/Weill Cornell Medical Center in New York City.
Everyone is here for the same reason: She can?t get pregnant without a doctor?s help. Yet with so much in common, no one speaks or even acknowledges one another. The women sit at least one empty chair apart, reading the newspaper, tapping on their BlackBerries, staring at their shoes. The few who are accompanied by husbands ? they don?t talk, either.
?You can cut the tension with a knife,? says Lisa, a 33-year-old health-policy analyst who is here for her fourth cycle of in vitro fertilization (IVF). Lisa finds a love seat with room for her and her oversize red leather purse and plops down into it. It?s 8 a.m., but already she?s exhausted. And she?s scared, hoping for joy but preparing for heartbreak.
It?s a feeling she?s grown accustomed to in more than two years of trying to have a baby with her husband, Jack. Her big brown eyes are on the verge of tears. ?I never imagined it would come to this,? she says.
After three failed IVFs in their hometown of Washington, D.C., Lisa and Jack have taken a leave from their jobs, moved to New York for two weeks and are spending roughly $20,000 for another chance to conceive. No one close to the couple knows they?re here ? not Jack?s family in the Midwest and not Lisa?s parents, who live in an outlying suburb. They?re paying $1,600 to sublet a studio apartment rather than tell family what they are doing. The only people who know are members of their support group back in Washington, strangers a few months ago and now the few people they feel can understand their struggle. They share this experience with SELF under an agreement to print only their middle names. ?We have so much invested that we can?t handle other people being emotionally invested,? Lisa says. ?We can?t deal with other people being upset if it doesn?t work when we are already so upset ourselves.?
Doctors have diagnosed Lisa with ?unexplained infertility,? which accounts for approximately 20 percent of all infertility diagnoses. Even after her first IVF failed last year, she and Jack had remained optimistic their second try would give them a family. Lisa was still young, and both she and Jack appeared to be in perfect health. For Lisa, each procedure had a 60 percent chance of success, according to statistics from Shady Grove Fertility Center in Washington, D.C., where Lisa was being treated. She was at work when the nurse called with the news that barely any of her eggs had become fertilized. Lisa phoned Jack, and together but apart, they each closed their office door and sobbed. That night, they huddled together in their bed, lights off, ringing phone ignored. ?We were in a very dark place,? Jack remembers. They began avoiding friends, canceling plans and not making new ones.
Lisa was left heartbroken and angry ? not least at herself. ?When the first cycle didn?t work, I thought, OK, maybe it?s one of the medications and I had a weird reaction to it. But when the second cycle didn?t work, I began to think, No, there is something wrong with me. I was crushed. I wondered, Why is my body betraying me? Why won?t it do what it is supposed to do??
By now, the couple has grown so anxious when questioned about starting a family that before going out, they have to strategize about how to handle their feelings if the conversations veer in painful directions. Lisa regularly declines baby shower invitations, claiming she is heading out of town. They celebrated last Thanksgiving with a cousin whose children are preteens rather than be around family who have babies or toddlers. ?No one means to say the wrong thing,? Jack says, ?but inevitably people have questions or comments that start off innocuously and then turn into an emotional land mine.?
One in eight American couples will experience infertility, and 1.1 million women will undergo treatment this year. That most won?t talk about it makes it that much more painful: A recent survey of infertility patients reveals that 61 percent hide the struggle to get pregnant from friends and family. More than half of the patients included in the survey, conducted by pharmaceutical giant Schering-Plough, reported that it was easier to tell people they didn?t intend to build a family rather than share their troubles. ?It?s almost impossible to convey what it?s like to people who haven?t gone through it,? Jack says. ?There?s a feeling of despair and loss that you just can?t quantify. So much weight is on the line, so many questions about genetics and identity and what it means to pass that down ? or not.?
An anonymous epidemic
Having difficulty getting pregnant can cause as much grief as losing a loved one, says Linda D. Applegarth, Ed.D., director of psychological services at the Perelman Cohen Center. ?But it?s different. It is chronic and elusive,? she adds. ?There?s a fear that life will be eternally empty. Some feel a sense of damage and brokenness; it goes to the heart of who they are.? The result is the dread and shame that Applegarth sees in her waiting room. ?Patients slink around and sit in corners because they don?t want to see anyone they know from their work or social circle,? she says, ?even if it would mean they would know someone going through the same thing.? Only 5 percent of patients use the psychological support services their clinic offers, despite data showing how helpful they can be.
Women?s silence hurts more than themselves. It ensures that infertility remains an anonymous epidemic, with less funding and research than other common medical problems receive. Infertility activists, a beleaguered few, struggle to find allies. ?We can get only a handful of our own volunteers to speak out, because of the shame,? says Barbara Collura, executive director of Resolve, the national infertility association in McLean, Virginia. ?Because we have so little patient advocacy, we have so little progress.?
It?s a strange dichotomy: How can a health issue that gets so much ink be shrouded in silence? We?ve read about the ?Octomom? freak show and how the proliferation of multiples, linked to the rise in fertility treatments, drains the health care system. But rarely is the average person made aware of the frustration that 12 percent of women of childbearing age endure trying to make a baby. Nor do most people realize that a majority of infertility treatments fail; in 2006, 57 percent of IVF cycles using women?s own eggs failed, according to the Centers for Disease Control and Prevention (CDC) in Atlanta. (Procedures using donor eggs do better ? the failure rate for those is 37 percent.) A study from Harvard Medical School in Boston shows that women who have difficulty getting pregnant can be as depressed as those who have major heart problems or cancer.
Infertility is not cancer. But it is debilitating. And some activists argue that infertility desperately needs the kind of awareness effort that helped bring cancer out of the shadows two decades ago. Breast cancer has its pink ribbon. AIDS has its walks, multiple sclerosis its bike-a-thons. Resolve does sponsor an awards gala honoring achievement in the field, but it draws primarily doctors and other professionals from the infertility world, not patients, and most important, it raises no money. Complains one Resolve member who walked out of last year?s event, ?Everyone gets up and tells their success stories. Infertility treatment isn?t always about success. And that?s the problem with how infertility is being handled; as with any other disease, some people won?t be cured. That?s why it needs more recognition and funding, so people can get help. But no one wants to recognize the failure.?
Because no one wants to discuss infertility, ?nothing gets done about it,? says Lindsay Beck, founder of Fertile Hope, a program run by the Lance Armstrong Foundation in Austin, Texas, that supports cancer patients whose treatments threaten their fertility. ?Infertility is where breast cancer was in the 1970s ? completely in the closet.? Beck?s treatments for her tongue cancer and its recurrence aged her reproductive system by possibly a decade; she ultimately had five IVF procedures and two children. She?s undergoing fertility treatments again in hopes of conceiving a third. ?In my experience, it?s a much lighter atmosphere in the cancer waiting room than in the IVF waiting room,? she says. ?Cancer patients talk about anti-nausea drugs and what worked for them. They look at each other as a means of support. For some reason, fertility patients tend to ignore each other in the waiting room.? Beck says that ?the cancer card? makes it easier for women to talk about their difficulties trying to get pregnant ? and to find financial assistance to pay for treatment ? after chemotherapy, radiation or both have ravaged their body. ?Everyone relates to cancer and is supportive of helping cancer patients,? she says. ?For the average fertility patient, there is no united front.?
Rather, women are often denigrated in their time of pain. Catholics may be made to feel like sinners; in 2008 the Vatican denounced IVF and certain other infertility treatments because they ?dissociate procreation from the context of the conjugal act.? Many legislators shy away from the issue because fertility treatments produce unused embryos, which are linked with abortion and stem cell politics. And on a deeply personal level, friends and family can wound with their words. ?I was afraid of people judging me because I was older,? says Mariana A., a software sales manager who spent more than five years in her 40s trying for a baby before having twins with the help of Advanced Fertility Services in New York City. ?They ask, Why did you wait? But they didn?t live my past. They don?t know if I had bad pregnancies. People?s prying is insensitive and inconsiderate.?
Even the health care providers and pharmaceutical companies that support infertility patients struggle with the best language to use and whether to label infertility a disease ? something that conveys its seriousness but could make some patients feel more stigmatized and broken. There are any number of reasons some women don?t conceive easily: age, endometriosis, polycystic ovary syndrome and their partner?s low sperm count, to name a few. Yet regardless of the why or how, ?infertility is a disability,? says William Gibbons, M.D., president of the American Society of Reproductive Medicine and director for Reproductive Endocrinology and Infertility at Baylor College of Medicine in Houston. ?For too long, those suffering from infertility have had their condition slighted or even ignored.?
Last November, the World Health Organization in Geneva brought some clarity when it defined infertility as an actual disease. ?Part of the problem is that the insurance industry considers infertility akin to cosmetic surgery; having a child is deemed by many insurers to be something men and women would like, but it?s not necessary for their health,? Dr. Gibbons says. ?Having an internationally recognized health organization acknowledge infertility as a disease is a baby step that hopefully will pave the way for insurers and other providers to improve coverage.? Scant insurance coverage not only marginalizes patients but also adds to their stress and shame. ?Women often feel humiliated about having tried so hard with nothing to show for it, especially if the process has left them bankrupt,? Beck says. ?People don?t want to talk about [the money].?
It?s not that patients don?t want to help rally for better insurance and more research. But treatment can be so emotionally, physically and financially enervating that, in the middle of it, they have neither the time nor the energy to invest in activism. If treatments succeed, or patients adopt, they are then busy with young children. However someone resolves her infertility, the tendency is to want to put her struggles behind her. ?People want to forget,? says Collura of Resolve, whose activities include local support groups for infertile couples nationwide. ?We do our damnedest to instill in our members that they need to take a stand and help the cause or the same thing is going to happen to the women who come after them.?
A painful ordeal
On day 5 of Lisa?s IVF cycle, snowstorm warnings loom up and down the East Coast. Lisa and Jack find themselves trapped in their lie: They had told her parents they would visit New York from Washington that weekend, but because they are actually living in New York for Lisa?s treatment, they need to know how much snow will fall a few hours south to see if they need to ?cancel? their fictional trip. Even if the weather cooperates, the couple has yet to figure out a cover story for where they are staying, as they can?t reveal they?ve rented an apartment. ?We?re not terrible people,? Jack says sheepishly.
?Logistically, it?s getting harder not to tell people, especially our families,? Lisa adds. ?[IVF] is no longer just a part of our lives; it?s the focus of our lives. It?s hard not talking about it with my mom because I know she?s wondering when we?re going to have kids but doesn?t want to pry. Yet it?s painful because she talks to me about other people who are pregnant, and I don?t think she?d do that if she knew what we were going through.?
Lisa feels close to the edge. The couple?s savings are nearly gone: Since getting married in 2006, she and Jack have been putting aside more than $1,000 a month for future child-care costs and a house in a better school district; all that money has been spent. Everyday occurrences ? learning a friend is pregnant, seeing a mom with a stroller on the street ? can send her into a fit of tears. She even confesses to feeling jealous of women in her support group who have miscarried. ?As devastating as that is, getting pregnant at all is still kind of encouraging for your overall prognosis. For us, it?s been two and a half years and nothing.?
Infertility treatments can be so intense that even when money is not a factor, ?the stress can be too much to continue,? says Alice Domar, Ph.D., director of the Domar Center for Mind/Body Health at Boston IVF. Last year, researchers at Harvard Medical School found 34 percent of patients younger than 40 with insurance for at least three IVF cycles dropped out after only one or two; 68 percent of patients older than 40 gave up before exhausting their coverage. The process swallows lives; women become slaves to their monthly cycles, often unable to leave town even for a weekend getaway due to daily monitoring for hormone levels and egg counts. When month after month a couple fails to get pregnant, their lives stall and the question of whether or not their family will expand looms over decisions about the car they buy, the house they live in, the clothes they purchase.
The longer the process drags on, the more uncomfortable they tend to become talking about it to other people. ?Even in well-meaning attempts to make you feel better, people say something that makes you feel worse,? says James Grifo, M.D., director of the New York University Fertility Center in New York City. ?Isolation is a defense mechanism against overload. It isn?t necessarily a good thing, but it?s what infertility patients do to protect themselves.?
At 33, an age when her entire social circle seemed to be wearing maternity clothes, Tara Elbaum couldn?t get pregnant with a second child. ?It was so easy for them,? says Elbaum, an attorney in New York City. ?Their babies were always in my face, at birthday parties, when I dropped off my son at school. My way of dealing with it was not talking about it.?
Elbaum, who had five IVFs and two miscarriages before finally getting pregnant with her daughter, struggled with her feelings. ?I hated being jealous,? she says. ?It?s one of the ugliest emotions someone can feel, and I felt it all the time.? Elbaum even envied the support and attention a relative received after announcing her diagnosis of non-Hodgkin lymphoma a day after Elbaum miscarried. ?Within two seconds of her telling the family, people were saying, ?I know this doctor,? ?How do you feel?? ?What can I do for you??? Elbaum remembers. ?There I was still bleeding from my miscarriage, and I didn?t feel I could talk about it.?
Sometimes, it?s easier to share intimate details with strangers. Across the Internet, message boards and blogs rage with the anxiety, grief and frustration of thousands of infertility patients typing in from around the world. ?It can be humiliating to feel like you?re not normal, and the Internet provides a safe haven,? says SELF contributing editor Catherine Birndorf, M.D., clinical associate professor of psychiatry and obstetrics and gynecology at Weill Cornell Medical Center. But despite the consolation that anonymous online friends can provide, Dr. Birndorf warns, ?when you start talking to only these strangers, you disconnect from the people in your life, and that?s even more isolating. We still need to have real relationships.?
Domar remains frustrated that only about 100 of Boston IVF?s 2,500 annual patients seek mind/body services from her center. ?Denial is a factor,? Domar says. ?Walking into that room, you label yourself as infertile. That?s hard for a lot of people.? Although one of the greatest insults to an infertility patient is to tell her she should ?just relax,? studies show stress does make women less likely to ovulate ? and that there are ways they can feel more calm. A Harvard Medical School study published in 2000 established a link between lowering anxiety and improved pregnancy rates in women who had been trying to conceive for between one and two years. Research also reveals that patients who get psychological support often feel less distress about treatment. And if their treatment fails, Domar says, they are quicker to build their family in other ways, such as donor eggs or sperm or adoption.
Domar shared with SELF preliminary results of new research she hopes will inspire more patients to seek help: In a small study of 97 Boston IVF patients younger than 40, women who had participated in 5 to 10 mind/body sessions were 160 percent more likely to get pregnant after a single IVF cycle. And more than two-thirds of women with a clinical diagnosis of depression got pregnant after these sessions, whereas none of the depressed women in the control group conceived. The meetings teach relaxation techniques to ease anxiety and cognitive-behavioral strategies to fight depression. ?These results can absolutely be replicated,? Domar says. ?Isolating oneself during fertility treatment is not helpful to getting pregnant.?
'How is anyone else going to fight for you?'
?Where are the tens of thousands of patients affected by this disease?? Congresswoman Debbie Wasserman Schultz (D?Fla.) asked the group of Resolve members gathered on Capitol Hill for Advocacy Day in June 2009. Wasserman Schultz was the last speaker of the day, and at least half of the 90 women who had come to lobby their legislators had already left. But still, said the congresswoman, there should have been more people there in the first place. ?Where are your numbers?? she challenged them. ?If you?re not going to fight for yourselves, how is anyone else going to fight for you??
The women were floored. They had paid their own way from as far away as Florida and Chicago. Some had left children at home. ?Her speech was sobering for those of us fighting the fight,? Collura says. ?Some volunteers were upset because they had worked so hard just to get those people in the room. But she was right.?
?When you have an issue that impacts millions and you can?t muster even 100 people to the Hill on a day that belongs to them, it becomes hard as a member of Congress to commit to putting energy into that issue,? Wasserman Schultz says now. A breast cancer survivor, former infertility patient and mother of three, she has been a regular at Resolve?s Advocacy Day, mostly seeing the same faces year after year. ?I had held my tongue for years,? she says.
When Wasserman Schultz shared her breast cancer ordeal with Congress, politicos from both parties approached her to tell the stories of their mothers, sisters and daughters. Gaining respect and sympathy ? and having the backing of the powerful breast cancer lobby ? enabled her to move a bill promoting breast cancer education for young women. ?There is a stigma to infertility that somehow you are less of a person, and that stigma has to come off completely,? she says. ?Patients need to start shouting from rooftops. And their doctors need to step up with resources and advocacy, because they are the ones with the means to organize.?
When patients do take up the cause, it can make a difference. Risa Levine, a 48-year-old attorney in New York City, endured 10 IVF cycles and four miscarriages, yet remains childless. ?Someone who had a breast cancer scare once said to me, ?What you went through is nothing; it?s not like you were scared you were going to die,?? Levine recalls. ?My thought was, Yeah, but I wanted to.?
Instead of withdrawing, she began making calls: Several years ago, outraged at the dearth of funding and research for infertility, Levine approached then Senator Hillary Clinton (D?N.Y.), who went to the CDC. As a result, in 2008 the agency issued a white paper that outlined the very need that Levine and other advocates want fulfilled: more money for more research. There is little knowledge of the link between infertility and chronic diseases, the document notes, and no information on how much infertility could be reduced by promoting better nutrition, exercise and smoking cessation. Of 84,000 chemicals in the workplace, information on reproductive toxicity is available for only a few thousand. No agency tracks the success of treatments that do not involve assisted reproductive technology or measures the health risks of treatment for mothers and children. And the infertility research that has been done emphasizes women, leaving the causes of men?s infertility largely a mystery.
The CDC report paved the way for the federal government to develop a National Action Plan for infertility, says Maurizio Macaluso, M.D., chief of the women?s health and fertility branch of the division of reproductive health at the CDC. He hopes this project will create newfound awareness that will ?reduce the concern that [infertility] is a punishment or fate ? or that it cannot be altered.?
After learning firsthand that the average cost of one round of IVF is $12,400, Levine lobbied her congressman, Anthony Weiner (D?N.Y.), who reintroduced the Family Building Act, a bill that calls for federally mandated insurance coverage for infertility. (Currently, only 15 states have some form of mandate; the bill is awaiting a vote in committee.) Senator Kirsten Gillibrand (D?N.Y.) has introduced the Family Building Act to the Senate. ?One person?s passion matters,? she says about Levine.
Recently divorced, Levine no longer expects to become a parent, a revelation that pains her every moment of the day. Still, she says, ?if this cause was important enough for me to fight for while I was trying to have a baby, it has to be just as important when I failed ? even more so.?
As the day of Lisa?s pregnancy test ? also Jack?s 43rd birthday ? approaches, her anxiety skyrockets. She?s been in email contact with her support group but no one else. When her book club met the day she returned to Washington, she concocted a story about digging out her stoop and sledding down her street during the epic snowstorm that, actually, she had missed. ?Everyone was telling stories about how they survived, and I figured I had to join in,? she says.
Jack?s birthday arrives, and Lisa is able to give him the gift he wanted most. ?We are so happy and relieved!? she writes in an email to SELF after receiving news of her positive pregnancy test. ?I (almost) feel like a normal person for the first time in two years.? Who else hears the happy news? Her acupuncturist and pregnant support group buddies. ?IVF is a process, and it?s easier to talk to people who have an intimate knowledge of it,? she says.
As it turns out, Lisa and Jack are having twins. And finally, after 14 weeks, they tell their parents. Although they admitted they had seen doctors at Cornell, they never confessed how long they had been trying, how many procedures they had endured or how much this pregnancy ultimately cost. Then again, their parents didn?t ask. ?I think they were just happy that I was pregnant. They had been worried that we didn?t want kids,? Lisa says.
Even though she didn?t share all the gritty details with her family, Lisa admits, ?It?s nice to talk about it. I didn?t realize how depressed I was and worried about what someone would say. Truly, I didn?t realize how pervasive the pain was until I didn?t feel it anymore. It?s like the world has gone from black and white to color.?
Lisa became a paying member of Resolve when she and Jack started going to its local couples support group, and she plans to continue her membership. But now that she has what she wants, will she help fight for the cause? ?Certainly, there is not enough research or understanding of infertility,? Lisa says but adds that doing anything public might get her in trouble at her health-policy job. Working behind the scenes is one option, but she says, ?I?m sure my volunteer efforts will be for schools or parks. Once I have twins, I?ll have a lot less free time.?
What if we could talk about it?
By Jennifer Wolff Perrine
August 5, 2010
Activists say common health issue needs to emerge from shadows
Lisa scans the room for an empty seat. Save for the disembodied voices of unseen nurses summoning patients into exam rooms, the place is excruciatingly quiet. The clouds outside the floor-to-ceiling windows cast a pallor onto the walls, the furniture and the faces of some 40 women waiting at the Perelman Cohen Center for Reproductive Medicine at NewYork-Presbyterian/Weill Cornell Medical Center in New York City.
Everyone is here for the same reason: She can?t get pregnant without a doctor?s help. Yet with so much in common, no one speaks or even acknowledges one another. The women sit at least one empty chair apart, reading the newspaper, tapping on their BlackBerries, staring at their shoes. The few who are accompanied by husbands ? they don?t talk, either.
?You can cut the tension with a knife,? says Lisa, a 33-year-old health-policy analyst who is here for her fourth cycle of in vitro fertilization (IVF). Lisa finds a love seat with room for her and her oversize red leather purse and plops down into it. It?s 8 a.m., but already she?s exhausted. And she?s scared, hoping for joy but preparing for heartbreak.
It?s a feeling she?s grown accustomed to in more than two years of trying to have a baby with her husband, Jack. Her big brown eyes are on the verge of tears. ?I never imagined it would come to this,? she says.
After three failed IVFs in their hometown of Washington, D.C., Lisa and Jack have taken a leave from their jobs, moved to New York for two weeks and are spending roughly $20,000 for another chance to conceive. No one close to the couple knows they?re here ? not Jack?s family in the Midwest and not Lisa?s parents, who live in an outlying suburb. They?re paying $1,600 to sublet a studio apartment rather than tell family what they are doing. The only people who know are members of their support group back in Washington, strangers a few months ago and now the few people they feel can understand their struggle. They share this experience with SELF under an agreement to print only their middle names. ?We have so much invested that we can?t handle other people being emotionally invested,? Lisa says. ?We can?t deal with other people being upset if it doesn?t work when we are already so upset ourselves.?
Doctors have diagnosed Lisa with ?unexplained infertility,? which accounts for approximately 20 percent of all infertility diagnoses. Even after her first IVF failed last year, she and Jack had remained optimistic their second try would give them a family. Lisa was still young, and both she and Jack appeared to be in perfect health. For Lisa, each procedure had a 60 percent chance of success, according to statistics from Shady Grove Fertility Center in Washington, D.C., where Lisa was being treated. She was at work when the nurse called with the news that barely any of her eggs had become fertilized. Lisa phoned Jack, and together but apart, they each closed their office door and sobbed. That night, they huddled together in their bed, lights off, ringing phone ignored. ?We were in a very dark place,? Jack remembers. They began avoiding friends, canceling plans and not making new ones.
Lisa was left heartbroken and angry ? not least at herself. ?When the first cycle didn?t work, I thought, OK, maybe it?s one of the medications and I had a weird reaction to it. But when the second cycle didn?t work, I began to think, No, there is something wrong with me. I was crushed. I wondered, Why is my body betraying me? Why won?t it do what it is supposed to do??
By now, the couple has grown so anxious when questioned about starting a family that before going out, they have to strategize about how to handle their feelings if the conversations veer in painful directions. Lisa regularly declines baby shower invitations, claiming she is heading out of town. They celebrated last Thanksgiving with a cousin whose children are preteens rather than be around family who have babies or toddlers. ?No one means to say the wrong thing,? Jack says, ?but inevitably people have questions or comments that start off innocuously and then turn into an emotional land mine.?
One in eight American couples will experience infertility, and 1.1 million women will undergo treatment this year. That most won?t talk about it makes it that much more painful: A recent survey of infertility patients reveals that 61 percent hide the struggle to get pregnant from friends and family. More than half of the patients included in the survey, conducted by pharmaceutical giant Schering-Plough, reported that it was easier to tell people they didn?t intend to build a family rather than share their troubles. ?It?s almost impossible to convey what it?s like to people who haven?t gone through it,? Jack says. ?There?s a feeling of despair and loss that you just can?t quantify. So much weight is on the line, so many questions about genetics and identity and what it means to pass that down ? or not.?
An anonymous epidemic
Having difficulty getting pregnant can cause as much grief as losing a loved one, says Linda D. Applegarth, Ed.D., director of psychological services at the Perelman Cohen Center. ?But it?s different. It is chronic and elusive,? she adds. ?There?s a fear that life will be eternally empty. Some feel a sense of damage and brokenness; it goes to the heart of who they are.? The result is the dread and shame that Applegarth sees in her waiting room. ?Patients slink around and sit in corners because they don?t want to see anyone they know from their work or social circle,? she says, ?even if it would mean they would know someone going through the same thing.? Only 5 percent of patients use the psychological support services their clinic offers, despite data showing how helpful they can be.
Women?s silence hurts more than themselves. It ensures that infertility remains an anonymous epidemic, with less funding and research than other common medical problems receive. Infertility activists, a beleaguered few, struggle to find allies. ?We can get only a handful of our own volunteers to speak out, because of the shame,? says Barbara Collura, executive director of Resolve, the national infertility association in McLean, Virginia. ?Because we have so little patient advocacy, we have so little progress.?
It?s a strange dichotomy: How can a health issue that gets so much ink be shrouded in silence? We?ve read about the ?Octomom? freak show and how the proliferation of multiples, linked to the rise in fertility treatments, drains the health care system. But rarely is the average person made aware of the frustration that 12 percent of women of childbearing age endure trying to make a baby. Nor do most people realize that a majority of infertility treatments fail; in 2006, 57 percent of IVF cycles using women?s own eggs failed, according to the Centers for Disease Control and Prevention (CDC) in Atlanta. (Procedures using donor eggs do better ? the failure rate for those is 37 percent.) A study from Harvard Medical School in Boston shows that women who have difficulty getting pregnant can be as depressed as those who have major heart problems or cancer.
Infertility is not cancer. But it is debilitating. And some activists argue that infertility desperately needs the kind of awareness effort that helped bring cancer out of the shadows two decades ago. Breast cancer has its pink ribbon. AIDS has its walks, multiple sclerosis its bike-a-thons. Resolve does sponsor an awards gala honoring achievement in the field, but it draws primarily doctors and other professionals from the infertility world, not patients, and most important, it raises no money. Complains one Resolve member who walked out of last year?s event, ?Everyone gets up and tells their success stories. Infertility treatment isn?t always about success. And that?s the problem with how infertility is being handled; as with any other disease, some people won?t be cured. That?s why it needs more recognition and funding, so people can get help. But no one wants to recognize the failure.?
Because no one wants to discuss infertility, ?nothing gets done about it,? says Lindsay Beck, founder of Fertile Hope, a program run by the Lance Armstrong Foundation in Austin, Texas, that supports cancer patients whose treatments threaten their fertility. ?Infertility is where breast cancer was in the 1970s ? completely in the closet.? Beck?s treatments for her tongue cancer and its recurrence aged her reproductive system by possibly a decade; she ultimately had five IVF procedures and two children. She?s undergoing fertility treatments again in hopes of conceiving a third. ?In my experience, it?s a much lighter atmosphere in the cancer waiting room than in the IVF waiting room,? she says. ?Cancer patients talk about anti-nausea drugs and what worked for them. They look at each other as a means of support. For some reason, fertility patients tend to ignore each other in the waiting room.? Beck says that ?the cancer card? makes it easier for women to talk about their difficulties trying to get pregnant ? and to find financial assistance to pay for treatment ? after chemotherapy, radiation or both have ravaged their body. ?Everyone relates to cancer and is supportive of helping cancer patients,? she says. ?For the average fertility patient, there is no united front.?
Rather, women are often denigrated in their time of pain. Catholics may be made to feel like sinners; in 2008 the Vatican denounced IVF and certain other infertility treatments because they ?dissociate procreation from the context of the conjugal act.? Many legislators shy away from the issue because fertility treatments produce unused embryos, which are linked with abortion and stem cell politics. And on a deeply personal level, friends and family can wound with their words. ?I was afraid of people judging me because I was older,? says Mariana A., a software sales manager who spent more than five years in her 40s trying for a baby before having twins with the help of Advanced Fertility Services in New York City. ?They ask, Why did you wait? But they didn?t live my past. They don?t know if I had bad pregnancies. People?s prying is insensitive and inconsiderate.?
Even the health care providers and pharmaceutical companies that support infertility patients struggle with the best language to use and whether to label infertility a disease ? something that conveys its seriousness but could make some patients feel more stigmatized and broken. There are any number of reasons some women don?t conceive easily: age, endometriosis, polycystic ovary syndrome and their partner?s low sperm count, to name a few. Yet regardless of the why or how, ?infertility is a disability,? says William Gibbons, M.D., president of the American Society of Reproductive Medicine and director for Reproductive Endocrinology and Infertility at Baylor College of Medicine in Houston. ?For too long, those suffering from infertility have had their condition slighted or even ignored.?
Last November, the World Health Organization in Geneva brought some clarity when it defined infertility as an actual disease. ?Part of the problem is that the insurance industry considers infertility akin to cosmetic surgery; having a child is deemed by many insurers to be something men and women would like, but it?s not necessary for their health,? Dr. Gibbons says. ?Having an internationally recognized health organization acknowledge infertility as a disease is a baby step that hopefully will pave the way for insurers and other providers to improve coverage.? Scant insurance coverage not only marginalizes patients but also adds to their stress and shame. ?Women often feel humiliated about having tried so hard with nothing to show for it, especially if the process has left them bankrupt,? Beck says. ?People don?t want to talk about [the money].?
It?s not that patients don?t want to help rally for better insurance and more research. But treatment can be so emotionally, physically and financially enervating that, in the middle of it, they have neither the time nor the energy to invest in activism. If treatments succeed, or patients adopt, they are then busy with young children. However someone resolves her infertility, the tendency is to want to put her struggles behind her. ?People want to forget,? says Collura of Resolve, whose activities include local support groups for infertile couples nationwide. ?We do our damnedest to instill in our members that they need to take a stand and help the cause or the same thing is going to happen to the women who come after them.?
A painful ordeal
On day 5 of Lisa?s IVF cycle, snowstorm warnings loom up and down the East Coast. Lisa and Jack find themselves trapped in their lie: They had told her parents they would visit New York from Washington that weekend, but because they are actually living in New York for Lisa?s treatment, they need to know how much snow will fall a few hours south to see if they need to ?cancel? their fictional trip. Even if the weather cooperates, the couple has yet to figure out a cover story for where they are staying, as they can?t reveal they?ve rented an apartment. ?We?re not terrible people,? Jack says sheepishly.
?Logistically, it?s getting harder not to tell people, especially our families,? Lisa adds. ?[IVF] is no longer just a part of our lives; it?s the focus of our lives. It?s hard not talking about it with my mom because I know she?s wondering when we?re going to have kids but doesn?t want to pry. Yet it?s painful because she talks to me about other people who are pregnant, and I don?t think she?d do that if she knew what we were going through.?
Lisa feels close to the edge. The couple?s savings are nearly gone: Since getting married in 2006, she and Jack have been putting aside more than $1,000 a month for future child-care costs and a house in a better school district; all that money has been spent. Everyday occurrences ? learning a friend is pregnant, seeing a mom with a stroller on the street ? can send her into a fit of tears. She even confesses to feeling jealous of women in her support group who have miscarried. ?As devastating as that is, getting pregnant at all is still kind of encouraging for your overall prognosis. For us, it?s been two and a half years and nothing.?
Infertility treatments can be so intense that even when money is not a factor, ?the stress can be too much to continue,? says Alice Domar, Ph.D., director of the Domar Center for Mind/Body Health at Boston IVF. Last year, researchers at Harvard Medical School found 34 percent of patients younger than 40 with insurance for at least three IVF cycles dropped out after only one or two; 68 percent of patients older than 40 gave up before exhausting their coverage. The process swallows lives; women become slaves to their monthly cycles, often unable to leave town even for a weekend getaway due to daily monitoring for hormone levels and egg counts. When month after month a couple fails to get pregnant, their lives stall and the question of whether or not their family will expand looms over decisions about the car they buy, the house they live in, the clothes they purchase.
The longer the process drags on, the more uncomfortable they tend to become talking about it to other people. ?Even in well-meaning attempts to make you feel better, people say something that makes you feel worse,? says James Grifo, M.D., director of the New York University Fertility Center in New York City. ?Isolation is a defense mechanism against overload. It isn?t necessarily a good thing, but it?s what infertility patients do to protect themselves.?
At 33, an age when her entire social circle seemed to be wearing maternity clothes, Tara Elbaum couldn?t get pregnant with a second child. ?It was so easy for them,? says Elbaum, an attorney in New York City. ?Their babies were always in my face, at birthday parties, when I dropped off my son at school. My way of dealing with it was not talking about it.?
Elbaum, who had five IVFs and two miscarriages before finally getting pregnant with her daughter, struggled with her feelings. ?I hated being jealous,? she says. ?It?s one of the ugliest emotions someone can feel, and I felt it all the time.? Elbaum even envied the support and attention a relative received after announcing her diagnosis of non-Hodgkin lymphoma a day after Elbaum miscarried. ?Within two seconds of her telling the family, people were saying, ?I know this doctor,? ?How do you feel?? ?What can I do for you??? Elbaum remembers. ?There I was still bleeding from my miscarriage, and I didn?t feel I could talk about it.?
Sometimes, it?s easier to share intimate details with strangers. Across the Internet, message boards and blogs rage with the anxiety, grief and frustration of thousands of infertility patients typing in from around the world. ?It can be humiliating to feel like you?re not normal, and the Internet provides a safe haven,? says SELF contributing editor Catherine Birndorf, M.D., clinical associate professor of psychiatry and obstetrics and gynecology at Weill Cornell Medical Center. But despite the consolation that anonymous online friends can provide, Dr. Birndorf warns, ?when you start talking to only these strangers, you disconnect from the people in your life, and that?s even more isolating. We still need to have real relationships.?
Domar remains frustrated that only about 100 of Boston IVF?s 2,500 annual patients seek mind/body services from her center. ?Denial is a factor,? Domar says. ?Walking into that room, you label yourself as infertile. That?s hard for a lot of people.? Although one of the greatest insults to an infertility patient is to tell her she should ?just relax,? studies show stress does make women less likely to ovulate ? and that there are ways they can feel more calm. A Harvard Medical School study published in 2000 established a link between lowering anxiety and improved pregnancy rates in women who had been trying to conceive for between one and two years. Research also reveals that patients who get psychological support often feel less distress about treatment. And if their treatment fails, Domar says, they are quicker to build their family in other ways, such as donor eggs or sperm or adoption.
Domar shared with SELF preliminary results of new research she hopes will inspire more patients to seek help: In a small study of 97 Boston IVF patients younger than 40, women who had participated in 5 to 10 mind/body sessions were 160 percent more likely to get pregnant after a single IVF cycle. And more than two-thirds of women with a clinical diagnosis of depression got pregnant after these sessions, whereas none of the depressed women in the control group conceived. The meetings teach relaxation techniques to ease anxiety and cognitive-behavioral strategies to fight depression. ?These results can absolutely be replicated,? Domar says. ?Isolating oneself during fertility treatment is not helpful to getting pregnant.?
'How is anyone else going to fight for you?'
?Where are the tens of thousands of patients affected by this disease?? Congresswoman Debbie Wasserman Schultz (D?Fla.) asked the group of Resolve members gathered on Capitol Hill for Advocacy Day in June 2009. Wasserman Schultz was the last speaker of the day, and at least half of the 90 women who had come to lobby their legislators had already left. But still, said the congresswoman, there should have been more people there in the first place. ?Where are your numbers?? she challenged them. ?If you?re not going to fight for yourselves, how is anyone else going to fight for you??
The women were floored. They had paid their own way from as far away as Florida and Chicago. Some had left children at home. ?Her speech was sobering for those of us fighting the fight,? Collura says. ?Some volunteers were upset because they had worked so hard just to get those people in the room. But she was right.?
?When you have an issue that impacts millions and you can?t muster even 100 people to the Hill on a day that belongs to them, it becomes hard as a member of Congress to commit to putting energy into that issue,? Wasserman Schultz says now. A breast cancer survivor, former infertility patient and mother of three, she has been a regular at Resolve?s Advocacy Day, mostly seeing the same faces year after year. ?I had held my tongue for years,? she says.
When Wasserman Schultz shared her breast cancer ordeal with Congress, politicos from both parties approached her to tell the stories of their mothers, sisters and daughters. Gaining respect and sympathy ? and having the backing of the powerful breast cancer lobby ? enabled her to move a bill promoting breast cancer education for young women. ?There is a stigma to infertility that somehow you are less of a person, and that stigma has to come off completely,? she says. ?Patients need to start shouting from rooftops. And their doctors need to step up with resources and advocacy, because they are the ones with the means to organize.?
When patients do take up the cause, it can make a difference. Risa Levine, a 48-year-old attorney in New York City, endured 10 IVF cycles and four miscarriages, yet remains childless. ?Someone who had a breast cancer scare once said to me, ?What you went through is nothing; it?s not like you were scared you were going to die,?? Levine recalls. ?My thought was, Yeah, but I wanted to.?
Instead of withdrawing, she began making calls: Several years ago, outraged at the dearth of funding and research for infertility, Levine approached then Senator Hillary Clinton (D?N.Y.), who went to the CDC. As a result, in 2008 the agency issued a white paper that outlined the very need that Levine and other advocates want fulfilled: more money for more research. There is little knowledge of the link between infertility and chronic diseases, the document notes, and no information on how much infertility could be reduced by promoting better nutrition, exercise and smoking cessation. Of 84,000 chemicals in the workplace, information on reproductive toxicity is available for only a few thousand. No agency tracks the success of treatments that do not involve assisted reproductive technology or measures the health risks of treatment for mothers and children. And the infertility research that has been done emphasizes women, leaving the causes of men?s infertility largely a mystery.
The CDC report paved the way for the federal government to develop a National Action Plan for infertility, says Maurizio Macaluso, M.D., chief of the women?s health and fertility branch of the division of reproductive health at the CDC. He hopes this project will create newfound awareness that will ?reduce the concern that [infertility] is a punishment or fate ? or that it cannot be altered.?
After learning firsthand that the average cost of one round of IVF is $12,400, Levine lobbied her congressman, Anthony Weiner (D?N.Y.), who reintroduced the Family Building Act, a bill that calls for federally mandated insurance coverage for infertility. (Currently, only 15 states have some form of mandate; the bill is awaiting a vote in committee.) Senator Kirsten Gillibrand (D?N.Y.) has introduced the Family Building Act to the Senate. ?One person?s passion matters,? she says about Levine.
Recently divorced, Levine no longer expects to become a parent, a revelation that pains her every moment of the day. Still, she says, ?if this cause was important enough for me to fight for while I was trying to have a baby, it has to be just as important when I failed ? even more so.?
As the day of Lisa?s pregnancy test ? also Jack?s 43rd birthday ? approaches, her anxiety skyrockets. She?s been in email contact with her support group but no one else. When her book club met the day she returned to Washington, she concocted a story about digging out her stoop and sledding down her street during the epic snowstorm that, actually, she had missed. ?Everyone was telling stories about how they survived, and I figured I had to join in,? she says.
Jack?s birthday arrives, and Lisa is able to give him the gift he wanted most. ?We are so happy and relieved!? she writes in an email to SELF after receiving news of her positive pregnancy test. ?I (almost) feel like a normal person for the first time in two years.? Who else hears the happy news? Her acupuncturist and pregnant support group buddies. ?IVF is a process, and it?s easier to talk to people who have an intimate knowledge of it,? she says.
As it turns out, Lisa and Jack are having twins. And finally, after 14 weeks, they tell their parents. Although they admitted they had seen doctors at Cornell, they never confessed how long they had been trying, how many procedures they had endured or how much this pregnancy ultimately cost. Then again, their parents didn?t ask. ?I think they were just happy that I was pregnant. They had been worried that we didn?t want kids,? Lisa says.
Even though she didn?t share all the gritty details with her family, Lisa admits, ?It?s nice to talk about it. I didn?t realize how depressed I was and worried about what someone would say. Truly, I didn?t realize how pervasive the pain was until I didn?t feel it anymore. It?s like the world has gone from black and white to color.?
Lisa became a paying member of Resolve when she and Jack started going to its local couples support group, and she plans to continue her membership. But now that she has what she wants, will she help fight for the cause? ?Certainly, there is not enough research or understanding of infertility,? Lisa says but adds that doing anything public might get her in trouble at her health-policy job. Working behind the scenes is one option, but she says, ?I?m sure my volunteer efforts will be for schools or parks. Once I have twins, I?ll have a lot less free time.?
What if we could talk about it?
- In an ideal world, men and women could openly discuss their trouble building a family. Changing the way we speak to one another is the first step.
- When you?re the friend?
People often advise loved ones to ?stop thinking about it? or say, ?You could always adopt.? Although you may think you are comforting someone by telling her about your pal who got pregnant after three miscarriages, hold back. ?Don?t try to solve the problem, because you can?t,? cautions SELF contributing editor Catherine Birndorf, M.D. Instead, simply say, ?I love you and want to support you in any way that I can.? Then make a serious and specific gesture; infertility patients suggest offering a hand to hold at a doctor?s appointment or buying a mutual friend?s baby gift to spare your pal the pain of doing it herself.
- When you?re the patient?
Infertility patients hand their life over to an inexact science; their personal information is the one thing they can still control. Dr. Birndorf advises opening a conversation by saying, ?I want to tell you something, but I don?t want you to ask me a million questions.? If someone says something insensitive, she adds, stop and explain that she has hurt your feelings, however unintentionally. If you believe reaching out to others in your situation could provide comfort, find a support group at Resolve.org.
