Infertility: A Hidden Struggle

Women who experience infertility face an intense emotional journey, often unacknowledged, as they navigate the road to parenthood.

By Diana Price

Colleen Weaver was 34 and had two young sons, ages two and four, when she and her husband, Charles, decided to try for a third child. When Colleen did not conceive after about six months, her physician was not initially con­cerned. “My doctor said we should give it a year,” Colleen recalls.

When she still wasn’t pregnant at the year mark, Colleen underwent a series of tests that revealed that the follicle-stimulating hormone level in her blood was elevated to an extent that indicated she had little ovarian function and had already entered menopause. After additional testing she was diagnosed with premature ovarian failure, a condition marked by a cessation of the menstrual peri­od before the age of 40.1

Learning that she would not be able to bear another biological child was a crushing blow for Colleen. “This outcome seemed impossi­ble to me because I had just had a baby three years earlier,” she says, describing the shock of the diagno­sis. “I couldn’t grasp the idea that I had gone from fertility to infertility so quickly. I was in denial.” As she processed the news, she moved from denial to a deep and profound sense of loss. “It was like a death for me,” she says. “I really wanted this baby, and I wasn’t prepared for the answer I got. Everything I thought was pos­sible for me had been shut down.”

Emotional Response to a Physical Disease

According to the Centers for Disease Control and Prevention, 7.3 million women in the United States (about 12 percent of the reproductive-age pop­ulation) are affected by infertility; 3 million experience secondary infer­tility, as Colleen did, when they are unable to conceive after having at least one biological child.2

Although each woman will re­spond emotionally to the news of infertility in her own unique way, there are some universal feelings that women experience when they learn they won’t be able to bear a child. Bonnie Cochran, LCSW, BCD, who works with women and couples facing infertility in her psy­chotherapy practice in Fort Collins, Colorado, says the emotions that arise repeatedly include hopeless­ness, a sense of physical failure, embarrassment, shame, low self-es­teem, anxiety, and shock.

“There is so much emotionality and confusion attached to the expe­rience of infertility,” Cochran says. “Women can be in denial for quite a while. And there can be so much anger,” she says. “Women don’t al­ways know what to do with these feelings of anger—they are conflict­ed because society tells them they are supposed to be sweet and kind and supportive, but they’re scream­ing inside. The pain is so intense.”

Processing the emotional impact of infertility often occurs amid physically painful medical interven­tions, making the intersection of mental and physical stress especial­ly intense. There is the sense among many women of being physically “broken” and unable to fulfill their biological function as a woman.

For many women, facing the news of infertility means reevalu­ating the very foundations of their lives—all of their goals and dreams have been turned upside down. “Women can be unsure of where to go at this point because this is not something they ever envisioned,” Cochran says. “For so many wom­en, being a mom someday has been a lifelong goal, and then this hap­pens and they don’t know what to do with these emotions.”

An Unacknowledged Grief

Stories of women’s struggles with infertility are appearing more fre­quently in major media and becom­ing somewhat more present in public discourse, bringing welcome atten­tion to the topic, but for many the issue is still a private struggle. The quiet that has for so long surrounded the topic and the lack of public understanding of infertility as a dis­ease means that the grief women feel when they face infertility remains largely unacknowledged.

Though the Centers for Disease Control and the World Health Organization define infertility as a disease, there is still the widespread misperception that infertility is simply an inconvenience, a result of lifestyle choices. Dawn Daven­port, executive director of Creating a Family, a national adoption and infertility patient education and support organization, says, “There are so many misperceptions about infertility; women must hear, ‘You waited too long to have kids’ or ‘You lived it up in your twenties and waited too long’ or ‘You’re trying too hard’ or ‘This must be God’s plan for you.’”

Cochran says that women often place blame on themselves for life­style choices or spiritual behavior that they worry may have contrib­uted to infertility—asking them­selves if it was the choice to take birth control earlier in their lives or “if it’s a result of not having faith, of doing something bad or contrary to my religious beliefs.”

In addition to the misinforma­tion and misperceptions about the causes of infertility, many people don’t perceive the loss of infertility, of not being able to have children, Davenport says: “They diminish it by saying things like ‘Just relax and you’ll get pregnant,’ ‘Just adopt,’ or ‘Maybe you just weren’t meant to be a parent.’”

For women facing secondary infertility, the responses are often equally insensitive, diminishing the grief as a “selfish” or unnecessary emotional response. Colleen, who chose not to share her experience with many people, remembers the pain of hearing things like “at least you already have two children” and similar statements that undermined her very real sense of loss. “I knew I was blessed to have my two sons,” she says, “but I also experienced a lot of loss and pain. When the few people I told responded like that, I just shut down. It was very isolat­ing.”

Cochran says the inherent judg­ment in many of the responses women receive is especially pain­ful and further limits their sharing about the experience. “Couples are hesitant to let people know about their struggles because they’re being judged,” she says.

As a result of the lack of infor­mation about infertility and the misperceptions and judgment, the attendant grief that comes is often unacknowledged. “One of the prob­lems with infertility grief is that it’s unrecognized grief,” says Dav­enport. “This lack of recognition makes it harder for those confront­ing infertility grief because some of our healing comes through commu­nal recognition of the pain we’re experiencing; when that’s missing, you’re left alone to flounder.”

Working through It

Finding a safe place to share the grief is an important step for those facing infertility.

Davenport says that when peo­ple contact Creating a Family after confronting infertility, she and oth­ers in the organization take time to acknowledge the emotions and losses associated with the experi­ence, which can help those affected find peace. “We give people permis­sion to grieve, let them know that it’s okay to be sad and that they don’t have to jump quickly to the next step.” Quick to note that the pain and sadness of infertility isn’t something that can be “solved,” Davenport says that instead, for many women, the process is about finding peace with those emotions: “Not that you can ever fully resolve these issues, but you can make peace so you can make a good decision about what your next step should be.”

Speaking with a mental health professional experienced in infer­tility counseling can help those working toward peace and accep­tance. Cochran says that when she works with women and couples, she approaches the situation from a “strengths perspective”: “I ask peo­ple, ‘What are your strengths? Who is your support?’ to help them iden­tify the pockets of support in their lives.” Also essential, she says, is to help women “embrace the reality that they are more than their infer­tility, to try to help them step out of the moment to identify what other passions, interests, and new ideas might offer a semblance of balance in their lives.”

This wider perspective, Cochran says, can help those facing infertil­ity find a new direction that will open opportunities and help them move through and beyond their grief: “Finding a purpose in life can help people be willing to work through the grief instead of iden­tifying themselves as victims. A purpose helps them get out of bed in the morning; it helps them blos­som.”

Moving Forward

For some women, coming to terms with their inability to have a bio­logical child allows them to move toward a new vision of parent­hood, if that is still their wish. This new view will be different for each woman, influenced by myriad per­sonal insights that together define their process for building a family.

Davenport says that when she works with those facing infertility and looking for information about other options for growing their fam­ilies, she stresses the value of slow­ing down and gaining perspective. “We emphasize the importance of thinking through the situation, of understanding what their losses are and coming to appreciate those losses,” she says. “Then they will have the clarity to assess what their next options are and to get educated about what those options mean— physically, financially, from a par­enting standpoint, odds of success, and what feels most comfortable for them and for their partners.”

Cochran too stresses the impor­tance of coming to terms with the present grief of infertility before moving into parenthood through other means. “You have to go through the grieving process sepa­rately from surrogacy or adoption because those options are not going to fix or resolve the grief. Having a child is not the answer to the prob­lem; if you don’t process that grief, you can’t really move forward. The grief will continue to pop up. You must move through the grief to em­brace the next experience.”

For Colleen, spending the time to come to terms with the diagnosis al­lowed her to find clarity around how she wanted to proceed. “As I moved through the heartache of infertility, it seemed at times unbearable,” she says, “but as I found acceptance, adoption became my dream. I came to feel that I was meant to adopt; all of my sorrow was transformed into this clear opportunity, and I felt it was my calling.”

Personal Peace

Each woman and family will find their own path through the grief of infertility. For some the inability to have a biological child will open doors to new visions of parenting and family; for others purpose and passion may be directed to a dif­ferent channel, leading them down new personal or professional paths that can provide peace and satisfac­tion. No matter the outcome, wom­en will benefit from the process of coming to terms with infertility, by acknowledging and finding support in the fact that their grief is legit­imate and their loss profound but that over time their future is full of possibility.


Resources

American Society of Reproductive Medicine

ReproductiveFacts.org

Creating a Family: The National Infertility and Adoption Education Organization

CreatingaFamily.org

RESOLVE: The National Infertility Association

Resolve.org or (866) NOT ALONE [866-668-2566]


Sharing Private Loss for Public Good

One couple’s decision to share their journey provides inspiration and sup­port for others facing infertility.

Candace Wohl launched into married life with the same dreams as many other women: “We’ll get married; we’ll buy a house; we’ll plan a family.” But for Candace and her husband, Chris, the family piece of that dream did not come without extraordinary challenge.

The couple has chronicled their journey with infertility in their blog, OurMisconception.com, describing the seven years of physical and emotion­al trauma that marked their journey to parenthood. Among the hurdles they discovered, worked through, and have shared publicly: seven unsuccessful intrauterine inseminations; six failed in vitro fertilization (IVF) cycles; two sur­geries to remove precancerous cells in Candace’s uterus followed, ultimately, by a hysterectomy when she was diag­nosed with early-stage uterine cancer; and, finally, the elation of their daugh­ter Grayson’s birth through a gesta­tional carrier.

In a world where infertility is still of­ten a source of private, isolating grief, the Wohls’ brave decision to share their story so publicly is extraordinary. “I think it’s so incredibly important to share information about infertility,” Candace says. “One in eight couples is infertile, but we still don’t talk about it.”

Candace was initially hesitant to discuss the topic herself: “I didn’t dare talk about it at first—and I like to share. I generally have no problem talking about my feelings, but talking about my infertility made me feel like less of a woman; it made my husband and me feel less of a couple. We felt broken.”

But after years of struggling pri­vately, Candace and Chris made the decision to share their journey. “We felt alone and silenced by our disease and the shame of our inability to conceive,” Candace says. “Finally, after three years of secret procedures, declining baby showers, and dodging family-build­ing questions from our family and friends, I told Chris, ‘We cannot be the only ones who feel this way.’” It was at that point, in 2012, she says, that “we started the blog and opened the bedroom doors to our infertility to the public. It was the best decision we ever made.”

In 2013 their story was featured in an episode of MTV’s True Life series, docu­menting their sixth and final IVF.

Candace’s passion for creating com­munity and providing support for other women and couples inspires her in advo­cacy work and writing focused on infertil­ity. “I want other women to know, You’re not alone,” she says.

In addition to continuing to share her family’s story on OurMisconception.com, Candace serves as an advocate for RE­SOLVE: The National Infertility Associa­tion, a nonprofit organization committed to promoting reproductive health and to ensuring “equal access to all fami­ly-building options for men and women experiencing infertility or other repro­ductive disorders.” As she works to bring awareness to infertility issues and to provide support to women and families, she hopes to offer other women the re­sources she was missing: “I wish I had found RESOLVE and the support groups they offer during my journey,” she says, “because then I would have understood it was okay to feel all the complicated emo­tions I had.”

As she moves forward in her work to support others facing infertility, Candace hopes to encourage other women to ask questions, seek good care, and find the support they need. “I think it’s important to be your own best advocate,” she says. “Question your doctor; ask more ques­tions; find good resources.”


 

References

  1. Medical Conditions: Premature Ovarian Fail­ure. National Infertility Association website. Available at: http://www.resolve.org/about-infer­tility/medical-conditions/premature-ovarian-fail­ure-1.html?referrer=http://www.resolve.org/ about-infertility/medical-conditions. Accessed July 2, 2015.
  2. Chandra A, Copen CE, Hervey Stephen EH. Infertility and Impaired Fecundity in the United States, 1982–2010: Data from the National Sur­vey of Family Growth. Available at http://www. cdc.gov/nchs/data/nhsr/nhsr067.pdf. Accessed July 2, 2015.