Unsung Lullabies

Understanding and Coping with Infertility

Janet Jaffe, Ph.D., Martha Ourieff Diamond, Ph.D., and David J. Diamond, Ph.D.

St. Martin's Griffin

Unsung Lullabies
PART I
Reproductive Trauma: What Happens When Things Go Wrong?
One
This Isn't How It Was Supposed to Be
For couples experiencing infertility, wanting a baby is a craving unlike any other. The intensity of your longing is matched only by the complexity of the emotional and medical maze you must navigate. When unexpectedly faced with the sting of infertility, would-be parents experience an unacknowledged trauma that leaves them feeling not only frustrated and angry, but sad, frightened, confused, guilty, overwhelmed, and out of control.
You may feel as though you are losing your mind, as you're caught up in a swirl of difficult feelings. This isn't how it was supposed to be, you think. And you wonder, why is this happening to me? We, the authors, wondered this too, as we were going through infertility, and these are the first questions that many of the women and men we work with ask us. "It's so hard to talk about this," said Emily, a thirty-six-year-old teacher. Makeup couldn't erase the dark circles under her eyes. "I never thought I would have problems getting pregnant--I've always been as regular as a clock. Everyone else seems to have no trouble. So what's wrong with me?
"It's also embarrassing," she continued. "Everybody asks when we're going to have kids and I never know what to say. I don't feel like myself. I feel like such a loser."
Emily and her husband Jack, a thirty-nine-year-old lawyer, have been trying for three years to conceive. Six months ago, their first in vitro fertilization (IVF) attempt failed; now they need to decide whether to try another cycle.
"We've been through so many tests, but nothing has worked," she cried. "I'm so tired of being poked and prodded and filled with hormones that make me feel awful. Financially, my parents said they could help out, but I don't want to take their money. And what if it doesn't work again? I don't know if I can take another loss. And if it doesn't work, then what do we do?"
You, like Emily, may be experiencing the emotional turbulence of infertility and its treatment. Your mind races as all you think about is your infertility. Or you may feel vague and distracted, and have trouble concentrating or remembering things. You may not be able to sleep, or you may feel like sleeping all of the time. You may cry at the drop of a hat; you may explode easily. You may worry that you are going crazy. You may feel like a failure.
You obsess about what your body is doing now or the next step your doctor recommends. Faced with complicated decisions, often involving costly medical procedures, you may get frustrated by the lack of clear-cut solutions. You are devastated one moment, hopeful the next. You feel as if you're on a roller coaster--careening from excitement to gloom, wishful thinking to devastating disappointment--only this ride isn't at all thrilling; rather, the longer you're on it, the more you feel as if your carload of emotions is about to go soaring off its tracks.
You feel all these things because you are going through a reproductive trauma. Being unable to have a baby as and when you had hoped is one of the most painful crises that couples confront. Clearly this is not how you thought it would be.
What Is Reproductive Trauma?
Often unrecognized as such, infertility truly is a trauma. A trauma is any event or feeling that goes beyond the range of usual human experience and is overwhelming either physically, emotionally, or both. It typically involves a threat to your physical integrity or that of a loved one. It may be the result of a single devastating event or a series of events that gradually build up and overwhelm you. As part of the mind's attempt to master the catastrophic overload, the events may be re-experienced in flashbacks, which can be triggered by anything reminiscent of the original events. Sometimes a general hypersensitivity and irritability occurs, alternating paradoxically with a sense of numbness and withdrawal. A traumatized person feels anxious, depressed, and has difficulty concentrating.
What makes the experience of infertility a trauma? The diagnosis of infertility, and the medical interventions often needed to treat it, represent a threat to our physical integrity, our sense of being healthy and whole. One of the most fundamental aspects of our physical selves is our reproductive capability. When that does not function properly, we doubt everything else. Infertility is a trauma because it attacks both the physical and emotional sense of self, it presents us with multiple, complicated losses, it affects our most important relationships, and it shifts our sense of belonging in the world.
When you are diagnosed with infertility, the world as you previouslyknew it crumbles. No matter where you are in your journey--trying the "old-fashioned way" to no avail, whether you have just been diagnosed, are using drugs to produce more eggs, undergoing surgery--your outlook on everything changes as you adjust to this crisis and what it means for your future and your dreams. The trauma of infertility is such that what you had taken for granted and expected is lost.
Moreover, like a soldier who must return to battle again and again, you face an accumulation of traumatic losses when, month after month, another menstrual cycle occurs, the procedure doesn't work, or an intervention must be canceled. Infertile couples constantly re-experience their loss--and are consequently retraumatized--month after month. Not only do you react to one failed intervention, you react to the cumulative effect of all that you have undergone. The snowballing effect of all the treatment, all the trying, takes its toll.
How do you get through a trauma like infertility? As you and your partner go through treatment, you may hear, "Keep a stiff upper lip" or "If you have a positive attitude and you relax, everything will go well." The implied message in this well-meaning advice is that you should hide your feelings and not dwell on the negative. It may seem counterintuitive to rehash the details of your experience--after all, wouldn't it be better to forget all the bad things and move on? But this kind of trauma is ongoing and needs to be dealt with as you go through it. Talking about it helps.
Giving voice to your feelings gives you some relief from the trauma of infertility. Like an old-fashioned pressure cooker, it can help you let off steam by airing your worries, your distress, your sadness, your fears. If you can talk about what you are goingthrough, with someone who is not judgmental, but is understanding and safe, you will gain more control over the trauma and be able to move forward.
The Emotional and Medical Roller Coaster
"Not a day goes by when I don't think about getting pregnant," said Kate, a thirty-five-year-old museum curator trying to conceive for four years. "I know I dwell on it too much, but I can't control my thoughts. After I ovulate, it gets even worse. I start looking for symptoms. If my breasts get tender I calculate my due date. I can't help myself, even though it has always turned out to be PMS. When my period comes, I'm crushed."
Not only did Kate's emotions yo-yo through each month, going from high to low and back again, but she also ruminated about her activity during the month--wondering if she were to blame. She continued, "Then I begin to worry, and second-guess, and doubt myself. Should I have exercised as vigorously as I did? Did I do too much by carrying that heavy load of groceries? Did I forget to take my vitamins? Maybe I shouldn't have had that glass of wine. I monitor every move I make, every month, every day. I know I obsess too much, but I can't stop thinking, 'What have I done to deserve this?' All I want is a baby; is that too much to ask?"
Being preoccupied with pregnancy and consumed with wondering whether or not you are somehow to blame is typical of this kind of traumatic experience. There are emotional highs and lows inherent in infertility trauma. Yet friends and family members, even your doctors, may not understand how upsetting all this is to you.
Traumatic as well are the medical procedures to diagnose and treat infertility, which are physically and emotionally demanding,invasive, and painful. And the results may bring more questions than answers, causing even further distress.
Having waited out the prescribed year of trying on their own, Marissa, a thirty-two-year-old wedding and event planner, and her husband Ken, a thirty-eight-year-old veterinarian, consulted a specialist for an infertility workup. The doctor recommended that Marissa undergo a hysterosalpingogram procedure.
"The doctor stood on one side of the room, the technician on the other, and I lay there feeling helpless. They chatted about the Lakers while they were injecting the dye into me," she said. "The technician yelled: 'The right one is blocked!' They seemed happy to find something wrong. But I was devastated. It was all I could do to not start bawling on the table."
Finding out her tube was blocked--that there was something physically wrong--shocked Marissa. It isn't surprising that the tech's announcement sounded so loud to her; the bad news distorted her perception, as if the news were echoing in her ears. Not only did she discover her body wasn't functioning the way she expected it should, but what she wanted most--a baby--felt that much more unattainable.
Now she was having trouble concentrating on work. "How can I be planning these happy parties," she asked, "when I am feeling so miserable? It doesn't make any sense." She became envious of the brides she worked with and what she perceived as their naivete. "They all seem so young and carefree--as if all they wish for will come true. I imagine them barefoot and pregnant in the next year or two, and it makes me so jealous."
Ken also felt jolted by the news. "Spaying and neutering cats and dogs is a part of my practice," he said. "I never gave it a moment'sthought before, but now every time I do one, I think about what Marissa and I are going through. I wish I could laugh about it, but I can't. Going through all this is really taking a toll."
Every time your period arrives, every time you have another medical test or consultation, you must again face the loss of your dreams.
The Stakes Are High
While assisted reproductive technology (ART) provides hope for a dream come true, it can also subject infertile couples to even more emotional pain, more physical discomfort, and stress--in other words, more trauma.
By the time you get to your doctor's office to discuss infertility, you are already feeling vulnerable after experiencing several losses. In chapter 3 we discuss how these accumulated losses affect your self-esteem. As we discuss in chapter 4, when you decide to become a parent, you undergo a shift in your identity and adult development. When becoming pregnant fails to happen, you're faced with the loss of doing it the "normal" way. Because you have tried to conceive and have not been successful, it's understandable that you may feel depleted and desperate.
Shifting Gears: From "Normal" to Patient
The trauma of infertility is not confined just to the medical procedures you must endure, but reaches into the core of who you are and how you identify yourself. The shift in identity from healthy, normal person to infertility patient is one of the most disorienting and painful changes you might ever have to make.
When you are diagnosed with infertility, you are inducted intoa club that you never dreamed you would be forced to join: the "I Can't Have a Baby Club." "But this isn't me!" people cry, "I've always been so healthy!" Although the shift from healthy, about-to-be-pregnant person to infertility patient may happen gradually as you try to conceive over "the required year of trying," the end result hits you like a ton of bricks.
Emily, who is considering her second IVF, described this shift in her sense of self when she was first diagnosed. "As I was sitting in the doctor's office I felt like I was in the Twilight Zone. Everything about it felt wrong. This wasn't the doctor's office I was supposed to be in and this wasn't the news I was supposed to be hearing. Instead of a warm, kind doctor telling me the happy news that a baby was on the way, I had a scientist coldly quoting me numbers and facts. It was as if I had been beamed into a parallel universe where everything was the opposite of how it should be." Three years later, it still feels unreal to her.
As you plough through the tests and procedures, try to remember that it is only a part of your body that is not functioning properly. But since reproduction is so inherently intertwined with your sense of self, it can be difficult to parcel out that part of yourself from the rest.
Where Do I Belong? I've Been Pregnant, but I Don't Have a Baby
We, the authors, have found through our own experience, as well as our clients', that within the club there are subgroups. Infertility trauma and pregnancy loss take on many shapes and forms, but underneath it all is the pain of loss. For example, if you can get pregnant, but not carry to term, does that mean you are infertile?
As Charlene said, "Even though I had four miscarriages, I never thought of myself as infertile. But I still have no baby. My doctor told me that because I have never carried a pregnancy to term it was considered primary infertility, even though I was able to get pregnant. I cringed when he said that. I don't want to believe it's true."
Similarly, women who have a child and then are unable to conceive again are labeled with secondary infertility. They may resist this diagnosis because they don't see themselves as infertile (nor do others), and yet the basis of their trauma is the same. They want a baby, but somehow a baby is out of their reach. For couples with secondary infertility, making the shift from "normal" to "infertility patient" may feel so dissonant with their self-concept--after all, they are already parents who have proved their fertility--that the ego blow is enormous.
Starting Treatment
When an infertility doctor suggests you consider ART--from starting Clomid or other ovulation-enhancing drugs to intrauterine inseminations (IUIs) to an IVF cycle--you'll have many questions. What drugs are necessary, how will your body react to them, which procedure is best, how much will it cost, and how many times should you try? There are many more practical medical questions that you can ask and your doctor can answer.
But these procedures also raise emotional questions that your doctor can't answer. How will we get through this, what if it doesn't work, what are the odds, what will this do to our marriage, and what does this say about me?
Starting treatment makes many feel "like a tinderbox about toignite," as Rochelle said, about to take Clomid for the first time. The uncertainty of the situation made Rochelle, as it does for so many others, feel out of control, and added to her reproductive trauma.
Yet your partner may feel that your anxiety will hurt your chances. Ross, Rochelle's husband, needed to stay optimistic and positive. A successful pharmaceutical salesman, he was knowledgeable about drugs and comfortable interacting with doctors. "I don't understand why she's so on edge about taking Clomid. So many women do these days. I just wish she wasn't so tense. If she keeps thinking negatively, it's all bound to go wrong." Ross grew up with an alcoholic mother and learned to cover up painful emotions. His need to be upbeat and deny Rochelle's feelings was how he protected himself from his own anxiety and feelings of helplessness. As we discuss in chapter 7, regarding couples, part of the difficulty in dealing with infertility is that each person copes differently. Recognizing how you deal with the trauma and how your partner handles it can help prevent the two of you from misunderstanding each other. Accurately gauging each other's needs is crucial during this sensitive time.
Hanging in Midair: The Anxiety of Undergoing Treatments
Deciding what to do is stressful enough. Then there's the stress of undergoing treatments, which are both physically and emotionally taxing. The anxiety of whether or not this will work--if you even make it through a procedure--can exacerbate stress. You may find that tensions between you and your partner are at an all-time high. It's completely understandable that this is so.
Roberta and Scott, both in their mid-thirties, were having a terribletime in their first IVF cycle. Roberta's arms were black and blue from having her blood drawn so frequently. She winced every time Scott gave her an injection; feeling awful, his hands shook more, making matters even worse. Not only did the shots hurt, Roberta's swollen ovaries hurt her too. The daily doctor visits for ultrasounds were time consuming, drastically cutting into her workday.
Scott was also agitated about producing a sperm sample. "I kept worrying: what if I can't do this on demand? What will the doctor and nurses think? When I finally got in there it went okay. Let me tell you, there's nothing quite like a hospital bathroom to inspire romance!" He smiled. "The well-worn 'literature' in there made me realize I wasn't the only guy who had to do this, but I sure hope I won't have to do it again."
For many men, the relief of getting through the anxiety of producing a sample is quickly replaced by the worries about the results. Hearing any bad news--that your sperm count is low or that your motility is not the best--can send you into a tailspin of helplessness and self-doubt.
Other than making the decision to take the hormones and shots, infertile couples have no control over how the procedure will go. Your fertility cycle, your reproductive system, and to an extent, your future as parents are all in the hands of other people. The most intimate of acts between the two of you, once confined to the privacy of your bedroom, is manipulated by strangers in a sterile hospital environment.
Tammy, who has been trying to get pregnant for eighteen months, cried after her first insemination. "The doctor did everything so fast," she said. "I had wanted to at least hold my husband'shand or something as the sperm was injected, but there was no time. It was so impersonal. Whose baby is this anyway?"
And since you can't predict what will happen next, the treatment process is emotionally draining. Indeed, each step (particularly with an IVF cycle) can be a potential loss since it can fail at any number of places along the way. It may be that the egg quality is poor, or you don't stimulate well, or implantation is not successful. So much uncertainty can leave you with the feeling that everything is about to spin recklessly out of control--if it hasn't done so already. As Tammy described, "I feel like a fragile porcelain teacup, teetering precariously on the edge of the table."
Our Doctor, Our Last Hope
The loss of control you experience with infertility treatment increases your dependence on your doctors, which can further weaken your self-esteem and sense of your own competence.
As noted, Ross was far more trusting of his infertility doctor than was his wife Rochelle. For Ross, their doctor stood high on a pedestal. His view of their doctor as all-knowing provided him with relief and a sense of hope. "How can we have negative feelings about the very person who is holding the key to our dreams?" he asked. As with his alcoholic mother, he wanted to believe that all was well. He felt responsible then, as now, for keeping the emotional ship afloat.
But for many there are mixed feelings. Tara felt very attached to her doctor--he was a sensitive and caring man who was genuinely invested in helping her make a baby--but at the same time, she felt frustrated at her need to rely on him. After a failed procedure, Tara didn't think her doctor really understood. "He seemed soaloof when he called with the results--like I was just another case he had to deal with. I can't afford to get angry with him, because without him, I don't have a chance," Tara said. What Tara didn't understand was that her physician was likely having his own feelings of loss about the unsuccessful cycle.
Infertility doctors can be a complicated mix of artistry, altruism, science, and business. Most are devoted professionals who want you to get pregnant as much as you do. Since you depend on their expertise, you may idealize your doctor and his/her staff--you may look to them as having all the answers, but it is important to remember that they are just people too.
These medical procedures may be routine for your physician, but they are not for you. Infertility treatments are stressful, physically and emotionally. Your doctor is concentrating on the physical components of your treatment, not necessarily the psychological ones. Although you might want your infertility doctor to pay attention to all aspects of your care, including your emotional needs, that may be beyond the scope of his/her expertise. This can leave you feeling disappointed and even more diminished--less important--than before.
It is okay to be angry with your doctors. They may make mistakes and may not be as sensitive as you would like. Tammy's complaint that her doctor did her insemination too fast--she had wanted to hold her husband's hand--is a perfect example of how your vision of how things should go may differ from your doctor's focus on the medical procedure. If there are specific things you know you want or need from your doctor, it's reasonable to ask for them. Tammy let her doctor know she was disappointed. "Afterward, when I finally calmed down, I gave him a hard time," shesaid. "I teased him and asked if he had a hot date he was rushing off to. We agreed that next time we did an insemination, I'd remind him to include my husband; he was fine with that."
Because you are obliged to place so much hope in your doctor, your anger or ambivalence toward him/her can be very disconcerting. But don't be afraid to discuss your feelings with your doctor or staff. You can let them know if you disagree with them, or if you feel rushed or misunderstood. It's perfectly okay to ask questions and, if you don't understand, ask them again. It's also valid to get a second or even third opinion; you are, after all, making an enormous investment of time and money, to say nothing of your emotional commitment to this. Your doctor will not fall apart if you decide to consult with someone else. It can help to remember, whatever facility you decide to use, that the medical staff is working for you--you provide their paycheck and you are also one of their main referral sources. You are a valuable customer, and should be treated as such.
The Procedures: The First Two Weeks till Ovulation ...
You get your period. A new cycle begins. "I am my ovaries," you think, as you wonder how many eggs you will produce this time, or if they will be any good. You feel hopeful once again. But as ovulation gets closer, your nerves become more frayed. Whether you start taking drugs for an ART procedure or wait to start self-testing for ovulation, it's easy to become hyperaware of what's happening in your body. You wait for your temperature to go up. You run to the bathroom to check if there's a change in your mucus. And, if you are taking meds, you may not feel physically well, as the stimulation makes you bloated and uncomfortable or givesyou a headache and may even make you feel you are pregnant when you are not.
There is also the pressure of frequent doctor visits to monitor your progress. While the ultrasounds to see how your follicles are developing can be fascinating, it can also be stressful.
"It is exciting to watch," Lynn said. "But what if I don't make good enough eggs? Here I go again, worrying about stuff I can't control. But I mean, this is my body and yet this is happening to it. It feels so out of my control. I feel detached, like someone else is in charge, and yet so invested."
With each cycle, you become even more invested in the result. And more worried about whether or not it will work. It may feel as if your entire future is riding on this one single function of your body, of which you have no control. And as each cycle passes, you may feel more and more desperate.
It's that Time
You're ovulating, you're nervous, it's that time. What should be an enjoyable, loving moment between you and your partner feels obligatory. Or you may be going in for artificial insemination or egg retrieval. With bloated belly and partner in hand, you're off to your doctor's office for yet another procedure. What used to be a process that "magically" happened within a woman's body, now takes place using ultrasound, needles, test tubes, and petri dishes. With an IUI, there is no guessing; you know exactly when you have been inseminated. And with IVF, you can see the entire process of fertilization and watch the embryos grow.
What makes the medical treatment of infertility so emotionally painful is that technology provides you with an opportunity to attachin concrete ways to your baby-to-be. You not only watch on ultrasound as your eggs develop, if you are doing an IVF cycle, you see your "baby" when it is only eight cells old. The psychological and emotional attachment that you feel at each step of an ART procedure means that you can also suffer an enormous sense of loss at any point along the way when the procedure fails.
IVF allows you to witness the previously unseen processes of biology, and attachment may happen earlier and be more intense because of the visible evidence of an embryo. As much as people try not to attach--for fear of a loss--the process of attachment takes over and is very powerful. Therefore, if the procedure is not successful, the loss is that much more traumatic.
Judi and Adam, both teachers, devoted their summer break to trying IVF for the first time. After so many unsuccessful attempts with other procedures, they were thrilled when ten eggs of good quality were retrieved. The next day they found out of those ten, eight were mature and seven had fertilized. By the time of transfer three days later, three were good to go. At their transfer, their doctor was optimistic, proclaiming as he gave Judi a digital photo of the embryos, "There's your future family!" They were delighted with their doctor's enthusiasm.
Waiting: How Can a Glacier Move So Fast?
Time takes on an entirely different quality during infertility, whether you have tried making a baby the old-fashioned way or utilized ART. Indeed, the two weeks you must wait to find out if you are pregnant move at a glacial pace. The two-week wait can be filled with a mixture of hope, anxiety, anticipation, and fear--all magnified by each passing day. As you wait out your cycle, youmay even have sensations that make you think you are pregnant. Phyllis, who took Clomid for the second month, remarked, "I felt so exhausted as it got closer to my period--I wanted to sleep all the time. I really thought I was pregnant."
You may worry that if you don't think positively, you might hurt your success. Your doctor may even suggest that you try not to think about it. In an undoubtedly well-meaning attempt at reassurance, Judi and Adam's doctor suggested they should "just go home and live life normally" after their IVF embryo transfer. But it's difficult, if not impossible, to feel "normal" or not think about it during the wait. It can help to stay busy, but know that it is also natural for you to anticipate and be on edge about the outcome.
A doctor's suggestion to not think about it runs counter to what we, as therapists--and infertility patients ourselves--have found again and again. As with most traumatic experiences, giving voice to your feelings, especially those that are negative or painful, frees you from them far more effectively than denying them. If you can speak about your emotions, you can proceed with a much clearer mind and relaxed body.
If you have delayed childbearing, the experience of time passing can be even more difficult. The doctor may look at his or her schedule and casually say, "Oh, we'll start in two months," not realizing that two months can feel like forever. The hope that time can be extended indefinitely as you pursue a career or other activity is dashed when you realize that the clock is running out and every week, every month, and every year becomes critical. It is no longer trivial to wait two weeks, to say nothing of two months.
Infertility patients know all too well, however, that even as time slows down during some phases of treatment, at others, thingsmove altogether too fast. You go to what you think is a consultation, and the doctor suggests that you could be inseminated that day, or wants you to begin medication tomorrow. It can feel overwhelming, yet if you decline, weeks may pass before you have another opportunity. You also worry that if you don't act immediately when a recommendation is made, the doctor will disapprove, or be angry. And then where would you be--you must have the doctor's support if you are even to hope you'll get pregnant.
Finding Out
As you wait for the day your period might arrive or go to your doctor's office for a pregnancy test, the anticipation can be nerve-wracking. So many women describe endless trips to the bathroom to check whether they are bleeding. Others confess they have taken pregnancy tests before the two weeks are up. It's an agonizing time--whether you are waiting a few hours to hear from your doctor's office or even two minutes to see if your at-home pregnancy kit has turned positive--it feels as if your entire life is on hold until you know one way or the other.
Judi sobbed when she got the call. "Adam and I both stayed home all day--just waiting. I didn't know what to do with myself. I just sat by the phone, but then when it rang, I couldn't pick it up. Adam took the phone call. I could see on his face that it was a no go. The eggs looked so good, though. I was so sure that I was pregnant. I had to be ... ."
Judi continued to cry. "The doctor said I wasn't technically pregnant, but I had been pregnant, even if it was just for a moment! I feel like someone has died."
So often, this is a loss that goes unrecognized. Until recently,there was not even a name for such a loss. We know, however, that this "pre-carriage," or "pre-implantation miscarriage," can be emotionally devastating. During ART, you have experienced a "pregnant moment." If it fails, it is a baby--your baby--who has died, even if a medical pregnancy was never established.
Getting Through it
Acknowledging that infertility is a trauma, no matter what stage of treatment you are in, is the first step in getting through it. Your losses are real. Even if you know that your odds for successful treatment are low, you will still be grief stricken if that treatment fails. Your reactions and feelings not only make sense, but are expected and unavoidable. To defuse the intensity of your emotions, it's essential that you explore and talk about them.
The next step is understanding why. The following chapters explore the many reasons why infertility is a trauma. The first of these is that infertility does not merely represent a recent failed pregnancy, but a whole lifetime of dreams, hopes, and plans that have gone horribly awry.
Copyright © 2005 by Janet Jaffe, Ph.D., Martha Ourieff Diamond, Ph.D., and David J. Diamond, Ph.D.