Getting Off the Medical Treadmill
People outside of adoption are often surprised by how difficult it is for most couples to switch from receiving medical treatments to pursuing parenthood through adoption. After all, the medical treatments are usually protracted, expensive, and even humiliating. Once the treatment has proceeded for a year or more, the chances of a success are slight. Yet, after spending thousands of dollars on medical treatments, and many hours of time and energy, couples are hesitant to write off the investment. They may still believe that somehow, some way, they can have their own biological child. Besides, many couples are so exhausted from the ups and downs of the medical treatments that trying a whole new approach, like adoption, seems out of the question.
If any or all of these feelings seem familiar, this article may help with your own decision-making about whether to pursue medical treatment or to adopt. Perhaps part or all of the description below will ring true to you. If so, you can take hope. This has been the story of most people before they came to the Independent Adoption Center. Somehow, they managed to get off the "medical treadmill" and move on to the joy of being parents through adoption. And so can you.
Feeling Hopeless About Infertility
Let's be clear about what we mean by "infertility problems." The technical definition of infertility is the failure to become pregnant after a minimum of six months to one year of trying. But a broader definition is more appropriate. Some couples get pregnant only to go through the anguish of miscarriage. Others may be physically able to become pregnant and give birth, but not without a serious health risk either to themselves or, genetically, to the child. There are couples in which one or both partners have become voluntarily sterile—usually during a previous marriage—and now want to create a new family. For some women, age makes pregnancy unlikely or life threatening. And there are single people, primarily single women, who want to become parents despite their lack of a mate. Each of these problems is unique, but the people who suffer from them have much in common. What they share is a profound sense of frustration about not being able to have a baby; the "why" is secondary. And, typically, they also share an intensive involvement with the medical world in search of a solution.
Of course, seeking a medical solution first makes sense for most people. Medical treatments often do work: approximately 60 percent of people initially diagnosed as infertile are able to have a child biologically. But this is usually within the first year of medical intervention. If the treatments have not succeeded within a year or so, the chances of success fall dramatically to 10-15 percent or less. We would expect, then, that most people would try the medical path for a year, and then turn to alternatives like adoption. But that is not what usually happens. Instead, many couples keep going back again and again for more complicated and more expensive procedures. Typically, each new treatment has even less chance of success than did the previous approach. Yet people continue seeking a cure for years. In fact, most couples who come to our Center have been through at least three to five years of medical treatments. Why?
The simple fact that they are experiencing any difficulty having a child can come as a shock to people. Virtually every couple I have met over the last fifteen years expected to have a baby just as soon as they threw away their birth control devices. Even if they had heard about infertility problems, they assumed that was something that happened to other people, not to them. After all, most modern couples worry about unplanned pregnancies, not infertility.
Once they have acknowledged their infertility problem, the second shock comes when people realize that curing the problem may not be easy or even possible at all. Most begin the requisite medical treatments, certain that it is only a matter of time before they will become parents. After all, there are so many medical miracles these days, and infertility does not seem that large a puzzle to solve. Besides, most people facing infertility frustrations are part of the so-called "baby boomer generation," a generation more accustomed to success than failure. Many of these baby boomers are strongly goal-oriented. They are willing to work hard and to make whatever changes are needed in their lives so they can reach their goals. They get married, and if the marriage does not work out, they get divorced. They change jobs, or even careers if necessary, to find the "right" one. But they do expect to get what they want, and they usually feel that getting what they want is within their power to control. Then comes infertility, and nothing seems to work. Often years go by with no pregnancy. For many couples, this is the first time they have felt this hopeless about reaching their own goals in life.
For many people, infertility feels like a form of slow death, as the child of their dreams seems to dissolve in a haze of medications, operations, temperature charts, and repeated letdowns. In terms of my own personal infertility, I remember a time ten years ago, when I was asked to give a talk about infertility at a San Francisco Bay Area conference on men's health. At the time my wife and I had been trying unsuccessfully to get pregnant for seven years. We had tried almost everything, but only had two emotionally draining miscarriages to show for it. Before the talk, which happened to be on Father's Day, at least a dozen men asked me how old my child was. Each time, I winced and explained that I did not have any children yet. Soon I was feeling so desperate about not being a father like everyone else at the conference, I did something I did not think I was capable of: I actually hid away in an unused room in the building and I came out only to give my little speech.
The Impact of Medical Intervention
The character of the medical treatments for infertility adds to a sense of powerlessness. Most people do not look forward to going to a doctor. But usually the appointment is over quickly and the symptoms disappear rapidly, thanks to the right medication or just a few days of bed rest. If the problem is more serious, at least it is identified and brought under control. More often than not, the costs are at least partially covered under some type of health plan in most cases.
That sense of the problem being under control is often missing with infertility treatments. First, many of the tests and treatments (which can run into the thousands and sometimes tens of thousands of dollars) are not covered by health insurance. Even identifying the cause of the problem, much less finding a cure, can be a nightmare. Reproductive systems are amazingly complex, and the science of infertility treatment is in its infancy. Even worse, the tests to identify the problem can be expensive, humiliating, and seemingly endless. Many couples are asked, for instance, to chart the woman's fertility cycle by taking her temperature at exactly the same time, every single morning, sometimes quite literally for years on end. Though this seems like an easy task, couples report that after a while it becomes not only annoying but also infuriating. The test is a daily invasion of their life, as well as a constant reminder of their infertility.
If the basal temperature test is irritating, many of the other tests that are a routine part of fertility treatments are more upsetting, invasive, embarrassing, emotionally draining, and even demeaning.
"Okay, Ms. Jorgensen," my infertility specialist told me, "you and your husband need to have intercourse tomorrow morning before 8:00 A.M. Then be sure you are here by 9:30 a.m. sharp so we can do an exam to see if your husband's sperm and your cervical mucus are healthy enough." Sex on demand, that's terrific and we even let him tell us exactly what time to do it.
Then there's the hamster test. They take my sperm and try to impregnate a hamster egg. If it does not work, well then it will not work for human beings either. The jokes are endless and pretty good at that, but somehow it does not feel funny.
My favorite infertility treatment was Clomid, a powerful hormone that was supposed to induce the right cycle for my wife. It's the drug of choice these days. If you ask the doctor, they say there is 2-5% chance of 'emotional complications'. But talk to any ten infertile couples using Clomid, and eight will tell you that it makes the woman feel depressed beyond reason and the husband wants to sue for divorce. And the effects are felt every single month. That's certainly been our experience.
Three attempts spread out over seven months. Shots every day, life with the side effects of Pergonal, battles with the insurance company to try and get them to absorb some of the cost (now over $15,000) . Finally, on the third attempt at IVF just when we were about to give up because we were so exhausted, financially and emotionally, it finally worked. My wife was pregnant! And then a few days later, she had a miscarriage. We felt a pain beyond pain. We had done everything, everything, everything, and nothing worked.
Even though the medical intervention in their lives can be so painful, many people feel they have no choice but to continue pursuing medical treatment, no matter what the financial or emotional costs. A few years ago, a prominent infertility doctor told USA Today that his job would be easier if he did not have to deal with his patients being so emotional about becoming parents. But that is just it. Many couples get to the point where life seems empty without a child. No matter what their career accomplishments or their financial successes, no matter how rich or famous they are, they feel their life is at a dead-end unless they can become a parent. And for such couples, halting medical treatments seems like giving up all hope.
The doctor kept saying that the hysterectomy would be the answer. No more pain every month, no more danger of tumors, benign or otherwise. He said he could understand my reluctance since this was an operation and did require five or six weeks of recovery time. But he did not understand. The operation part and the recovery part were not thrilling prospects, but we could handle that. It was losing my God-given ability—or what I thought was my God-given ability—to have children that was making me so scared and upset.
There are other reasons why stopping medical treatment is so difficult. Many common medical problems have one or two possible courses of treatment. If you have strep throat, for instance, you take one or another of the major antibiotics. If you have diabetes, there are various diet regimes to follow and insulin treatments to administer. And the treatments usually work. With infertility, though, there is an almost endless number of possible solutions today. This has not always been the case. Years ago, when I directed an infertility clinic in San Francisco, there were only about six months' worth of possible treatments, including everything from baking soda to reduce the vaginal Ph, to Clomid, hysterosalpingograms, and tubal surgery. Today, there is a seeming less endless gamut of treatments to run through, from in vitro fertilization to ZIFT. Almost all of these are difficult, time-consuming, and expensive. But each has worked on somebody, somewhere, sometime. The medical profession deserves credit for having developed so many approaches to curing infertility. We can never adequately thank the doctors and researchers who make possible the joy of becoming a parent. Yet, ironically, these new treatments can keep people caught on a medical treadmill that prevents them from trying more promising alternatives, such as adoption.
The Medical Treadmill and Self-Esteem
The feeling of being trapped on this treadmill may be deepened by the impact that infertility can have on people's feelings of self-esteem and self-respect. When having a child becomes problematic, a couple may begin to believe that there is something seriously wrong with them. After all, "normal" people do not have this problem. Everyone else has babies anytime they choose to do so, and sometimes even when they wish otherwise. In the 1960's and 1970's there was less pressure on infertile couples. During those decades, creating a career, not becoming a parent, was foremost in many people's minds. People's infertility was hardly noticed; everyone assumed the couple had just decided not to have children yet. Today, things have changed. There is a mini-baby boom among 30-40 year olds, and couples struggling with infertility problems can find themselves regularly exposed to endless baby showers, birth announcements, and conversations about babies from their friends and relatives. Some infertile couples become so depressed, they even begin to wonder if they deserve to be parents. Maybe, they think, they waited too long. Or are too impatient. Or too speedy. Or too old. Or too set in their ways. In their darkest moments, they may even think they are "barren," cursed by God.
The standard medical terminology does not help either. All the drugs have long, complicated names; some of the procedures have titles that are virtual tongue twisters like hysterosalpingogram. After a year of infertility treatments, most couples have learned so many new medical terms that they could practically qualify for a certificate as "Interns in Ob/GYN Infertility."
But the problem goes beyond understanding and pronouncing long words. The medical terms, probably unintentionally, often imply that there is something 'morally' wrong with the patient. For years, for instance, doctors referred to endometriosis, a chronic inflammation in the woman's tubes, as the "working woman's disease." Supposedly, this problem did not occur among women who gave up their careers for motherhood and had babies in their early twenties. Although many doctors today have serious doubts about this connection, women with endometriosis are left feeling guilty that they chose to build their careers before having children. Or what about "sperm washing"? The term implies that a man's quite normal impurities are 'dirty" because his bodily fluids need to be cleansed. If a woman's cervix cannot hold the fetus, her problem is labeled "incompetent" cervix. If she has started menopause earlier than is usual for most women, she is not in "early" menopause, but in "premature" menopause. Some women have an enzyme in their body that reacts negatively with their husband's sperm: if so, the couple is labeled "allergic" to each other. None of these diagnoses leave people feeling good about their bodies.
The common non-medical explanations for infertility are also negative and blaming. Infertility is often considered the result of waiting too long to get pregnant. Sometimes it is correlated with having sexually transmitted diseases. In some ways, we have not come that far from the days when childless couples were labeled with that terrible term, "barren." In reality, age and health problems may both be factors in the increase in infertility, but their roles are exaggerated. While a woman's fertility does decline as she gets older, a man's does not. Most men are about as fertile at age 50 as they were at age 25. So, if age itself were the main factor, then almost all the infertility would be female, not male. But the opposite is true. In fact, anywhere from a 30-50% of infertility involves medical problems with the man.
Actually, there are broader social forces at play here, forces that are outside the control of individual couples. These include everything from the sterilizing effects of IUDs—orginally touted as a great form of birth control—to a variety of chemicals and drugs that men and women encounter at work or in the environment. Interestingly enough, only three countries in the world have serious infertility problems: the USA, Japan, and West Germany. What these nations have in common is not widespread sexually transmitted disease but high levels of industrialization, stressful lifestyles, and environmental and workplace hazards. However, these socio-political factors are rarely publicized or discussed. Most infertile couples are left to assume that their fertility problems are their own fault.
To make matters worse, most people struggling for a child are left to deal with all these attacks on their self-worth on their own. Even their usual sources of encouragement and support may be compromised or limited by the nature of the medical treatments themselves. For instance, since most people decide to have a child in part because of the strength and stability of their marriage, their spouse should be an important source of support for them as they go though the infertility process. But the struggle for a biological child can have a devastating impact on people's marriages. They may start to wonder if the fact that they cannot have a child shows that there is something wrong in their relationship. They may feel deprived of intimacy and connection in their sexuality because so much attention is focused on sex for reproduction rather than for caring and affection. Husband and wife may blame each other for their fertility problems or blame themselves. They may feel guilty about inflicting childlessness on their partner. We have no statistics on how many divorces result from infertility, but the emotional cost of infertility may well be an important factor in many marital problems.
At the time, my decision made sense. I had two children, and another pregnancy would be a disaster. So why not be sterilized? Now ten years later, I want to share parenting with my new wife. The doctors keep saying that this second operation will work better than the first. Sounds good but so much is at stake. Last time after the operation, we kept hoping. And then, every single month, just when my wife was feeling most vulnerable, she gets that sharp reminder most people call a menstrual period. We called this the "No! no! no! no! remember again, you are NOT pregnant" reminder. I keep feeling like I have cheated my wife out of parenthood. I can't imagine a worse thing to do to someone.
If spouses cannot be counted on in the long struggle to create a biological child, we would hope that their friends and relatives would help. But often, people are too embarrassed even to talk about their problems with their friends or family. I always ask the participants in our weekly adoption seminars to talk about the medical or health or genetic problem that brought them to consider adoption. For many participants, this is the first time they have told anyone outside of their marriage about their fertility problems, even though they may have been undergoing medical treatments for years and years. And even when people do tell friends and relatives about their infertility, the response is often more harmful than helpful. Most fertile people find infertility mysterious, hopeless, and even threatening. All too often, they simply repeat the litany of well-meaning but hackneyed, frustrating, and humiliating advice that every infertile couple learns to dread: "Just relax, "Drink a glass of wine," "Take a vacation," or even sometimes, "I told you should have had kids a long time ago and not waited so long." Each of these comments, in effect, blames the couple for their own infertility. They are infertile because they are too tense, too overworked, or too concerned with their careers. Not only do these remarks not help, but also they reinforce the negative impact infertility has on people's self-esteem.
Years ago, political analysts discovered that revolutions are usually made, not by desperate people, but by people who see some glimmer of hope. Hopelessness makes people passive, not willing to take risks. Desperation breeds passivity not only at the level of social movements, but at a personal, individual level as well. We might expect that the extraordinary toll of infertility would make people rebel against seemingly endless medical treatments. We might expect that they would storm out of the doctor's office and move on to other alternatives. Unhappily, the feelings of hopelessness and helplessness associated with infertility treatments more often lead to inertia.
Moving Off the Treadmill
If any or all of these feelings or experiences seem familiar to you, they were also familiar to most of the thousands of people who have since become parents through adoption. Almost all of them found themselves on one form or other of the medical treadmill. And each couple, in their own way, looked a little more closely at their medical treatments and decided they could step off the treadmill after all. Some people found support by joining groups founded especially to help people cope with their infertility. Others came to adoption programs for help. Others found hope by talking to friends who had faced similar problems and moved on to adopt.
For most people, the turning point came when they realized that, although they would mourn the loss of a pregnancy and childbirth, the joy of being a mother or father, no matter how that happened, was far more important.
Bruce M. Rappaport, PhD was the Founder and former Executive Director of the Independent Adoption Center, a national licensed agency with its central office in California, and the National Federation for Open Adoption Education. He was the author of The Open Adoption Book.