Johns Hopkins Commentary: Grieving Is a Part of Infertility
BALTIMORE - The majority of women undergoing fertility treatment suffer grief, depression, and isolation, according to an article by researchers from the University of North Carolina (Greensboro) published in a recent issue of Obstetrics and Gynecology. Looking for differences in grief and depression among the various infertility therapies, the researchers found that the women all experienced similar levels of grief — even before treatment and again after treatment failed — no matter what the treatment. Their grief and depression was as if they'd lost a child. In this installment of the HopkinsHealth series on infertility, Howard Zacur, M.D., Ph.D., Theodore and Ingrid Baramki Professor of Reproductive Endocrinology and the director of the Division of Reproductive Endocrinology and Infertility at Johns Hopkins, explains that these feelings are also due in part to society's dismissal of infertility as an insignificant medical problem, despite the anguish it causes.
Johns Hopkins: Do you agree with this research?
Dr. Zacur: I do, yes. The author's results are in agreement with what I've seen in clinical practice. The big surprise in this research is that the grief reaction was already there, even before people sought treatment. The article by Lukse and Vacc reported that the women in this study were already depressed and grieving before their treatment of IVF [in vitro fertilization] or ovulation induction. It must be understood that infertility itself is a disorder that causes anger, grief and depression. Couples who have an infertility problem are distressed. It is not only the failure to succeed that causes the problem. The couple is experiencing grief and depression even before they go through infertility treatment; what's superimposed on them is the hope that the procedure will work.
HH: What are the emotions you see in infertile couples?
Dr. Zacur: It's extensive, it's variable. The best way that somebody else could understand it is to compare it to the loss of a loved one. The couple goes through stages, like those outlined by Elisabeth Kubler-Ross, the author of "On Death and Dying." There's denial and anger and frustration and finally acceptance of what's occurred. The dilemma that exists in medical practice and society is that a couple feels terrible at not being able to conceive a child, and the couple believes that society doesn't place as much importance on that as the couple does. That's manifested by their difficulty getting insurance coverage, by their reluctance to tell family and friends they're infertile because of the guilt and shame. To fight for one's reproductive rights is seen as selfish: "Why should we spend these resources to bring another child into the world when we already have overpopulation?" So the couple is made to feel selfish. But the fundamental fact remains that the individual who fails to conceive feels this very, very deeply.
HH: Do you think they should have mandatory counseling? It once was mandatory, right?
Dr. Zacur: In the published article, the surprise was that couples were already grieving and depressed even before the infertility treatment process started. In the early 1980s, we were concerned that if a couple went through IVF and didn't succeed, it could be devastating, both emotionally and financially. Consequently it was common to require a counseling session with a psychologist before attempting IVF. But over time, IVF has become more common, and it's been modified and accepted so that there's not as much danger of embarking on the unknown, so to speak. What I think is much more appropriate is to have counseling available for any infertile couple who wants it, and letting them know that it is available. I don't think mandatory counseling is the best approach.
HH: Is there anything you can do to keep from getting their hopes up?
Dr. Zacur: People are so hopeful; you can talk to them about the fact that there may be an 80 percent failure rate and a 20 percent success rate, but they're going to focus on the 20 percent. It's normal and it's natural.
HH: In the face of that, how do you support them?
Dr. Zacur: By being as optimistic as possible and by letting them know that the medical team is on their side. It's like the loss of a loved one — you might not want to go to the hospital where your loved one died as it stirs up all those feelings. For the infertile patient, coming to the doctor's office is a reminder that it didn't work. We have to let them know that everyone is on their side. I try to be very positive and very honest.
HH: But the support systems in society aren't there.
Dr. Zacur: For couples who have cancer, or another medical problem, there appears to be much more sympathy. But infertility for a couple is just as wrenching as those other conditions are for another couple. A sympathetic ear is needed. What does it mean to a couple when their medical problem is not worthy of reimbursement? That sends an incredible message. To deny coverage for infertility is to tell a couple that they do not have a medically important disorder. We as a society must overcome this belief. The results of the present report demonstrate that infertility couples experience adverse psychological consequences to their infertility.
HH: I was once at a baby shower that was not attended by a woman having problems with infertility, and the sense among the guests was that she should have attended, she should have swallowed her disappointment and come, that perhaps she was being petty.
Dr. Zacur: You've put your finger on it now. For somebody who is so desperate to have a child, the emotional upheaval they feel when they're around their families and friends who are conceiving — it's a knife in the heart. It's something they desperately want and don't have, and people are not sympathetic. I recently heard someone on the radio from the group RESOLVE, which is the advocacy group for people with infertility problems. They wanted infertility classified as a disability; so they could have time off from work for medical treatments. And it's true — people have to come in and get blood drawn; it's very taxing and demanding of one's time. But other conditions allow people to go to the doctor's office during work hours.
HH: What's behind all this?
Dr. Zacur: What's happened here is that people have not really understood the magnitude of distress infertile couples feel. Those of us who deal with infertile couples are quite aware of it, but those who don't just don't understand it. These couples really do need to have people be more aware of it. When you think about it, many terrible health conditions aren't readily solvable. At least with this one, we have hope to offer.
