The Value of Support

Infertility is practically synonymous with emotional distress, especially among women. We have all heard that infertile women are as anxious and depressed as women living with cancer, heart disease, and HIV (Domar et al., 1993). Infertility can be a profoundly private experience, discussed only with one’s doctors and perhaps a few close family members. Many suffer alone.

Social support can be invaluable when struggling with infertility. Although social support has traditionally been conceived of as taking place in close personal relationships via face-to-face interaction, those experiencing infertility often find that their friends and family may have difficulty understanding their struggle, a struggle which can be prolonged, make it difficult to share others’ joy in pregnancy and childbirth or to attend events which either are child-focused or to which others will bring their children. In addition, couples often do not know others who are also experiencing this life crisis.

As a Co-director of Support Services for the Path2Parenthood (formerly known as The American Fertility Association – see announcement below), I know infertility support groups can:

• Reduce a sense of isolation Despite the fact that one in six couples experience infertility, most feel quite alone in this struggle. When you begin a support group, you will look around you and see other intelligent, successful, resourceful people, just like you. The feelings that infertility often creates (e.g., depression, loss of self-esteem, anger, envy, and shame) can lead individuals to withdraw and distance themselves from others. Often, one retreats into social isolation because the fertile world is just too painful. When you join a support group, you learn you are not alone, that others feel the same way that you do and have struggled to cope in their own ways just as you have. The common bond of infertility creates an almost immediate sense of empathy and safety. A support group becomes a place where you feel you can be open and honest; a place where you are accepted as you are; a place where you feel safe.
• Help normalize your experience. Women experiencing infertility often feel that they are going crazy from the experience, and their partners often too readily concur. Men, too, can feel sad or angry as they experience infertility. A support group, particularly a couples’ group, can help individuals realize that their feelings are normal and common and can help partners understand each other’s feelings as well. It can allow partners to feel good about themselves and each other as they experience personal acceptance within the group.
• Instill hope. Useful information is often shared among group members – about treatments, doctors, facilities, and coping mechanisms. A sense of helplessness and hopelessness is not conducive to seeking out the best medical treatment available to you, weighing the various options available to you for family building, or making important decisions for yourselves. Hope can help foster the realistic optimism necessary to do effective problem solving and decision-making. By encouraging assertion, support groups typically assist members to learn how to manage their infertility and take charge of their treatment in collaboration with their physician which can enhance feelings of being in control and actually improve the quality of the treatment you receive.
• Give you the opportunity to both give and receive support. Sometimes we feel so emotionally depleted from battling infertility that we start to believe we have nothing left to give to others. Finding that little bit of concern, caring, and empathy for others within your heart is a welcome reminder of your own humanity. There is no better antidote to feelings of vulnerability and helplessness than knowing you can count on a group of people to support you through disappointment, failure, or other setbacks…and knowing that others can count on you.

Research has also demonstrated the value of group support for infertile individuals (deLiz and Strauss, 2005), especially those groups stressing education and skills training (see Boivin, 2003, for an excellent review). Both men and women appear to benefit from support group participation, though often for different reasons. Women prefer groups that focus on the discussion of emotional issues and offer emotional and social support while men prefer information-oriented support groups, where they can obtain practical information and advice (Gray et al., 1996; Lentner and Glazer, 1991; Owen et al., 2004; Seale et al., 2006; Wolf, 2000).

In-person support groups can provide needed support for those struggling with infertility but are becoming scarcer and are unavailable in many geographic areas. Currently a large proportion of infertile couples and individuals from all socioeconomic levels report turning to the internet for fertility-related issues (Weissman et al., 2000). Telemental health support, delivered directly to an individual’s home via use of telecommunication technology including the telephone and internet, has emerged as a resource to fill the gap for those reluctant or unable to access face-to-face support. It includes synchronous (e.g., telephone and internet video teleconferencing) and asynchronous (store and forward technologies such as email, text messages, listservs, and message boards) communication. Often an easier conduit to people world-wide, it can provide a virtual community to those without access to such a face-to-face community who are experiencing infertility. Although often asynchronous, online support is ever available, and can allow people to maintain greater anonymity while obtaining support whenever they feel in need and wherever they may be. Communicating with people who have been through the same ordeal of infertility, even if not in a face-to-face encounter, has been shown to allow participants to become better informed, and feel less isolated, more empowered, less stressed, and more hopeful (Cousineau et al., 2008; Holbrey & Coulson, 2013; Malik & Coulson, 2010). Even online lurkers, that is, those observing but not actively participating or posting, have been found to benefit (vanUden-Kraan et al., 2008), although those more actively engaged do derive greater benefit (Mo and Coulson, 2010).

There are disadvantages of online support, however, including loss of confidentiality (as postings can be made public), questionable accuracy of information shared (one of the reasons many research participants have reported the wish to have professionally monitored internet support sites [Coulson and Shaw, 2013; Malik and Coulson, 2010; vanUden-Kraan et al., 2008]), lack of visual and aural cues found in traditional face-to-face communication, potentially poor technical quality, negative, sometimes hostile, social interactions due to the effects of social disinhibition that occur with anonymity, and a propensity to become addicted due to the constant and dynamic availability of the internet (Barak et al., 2008; Malik & Coulson, 2010). Nevertheless, the answer to the question in the title of this blog, is online support really supportive, appears to be yes. And, its availability is growing by leaps and bounds.

References available upon request from Joann Paley Galst, Ph.D. (jgalst@aol.com).

**This blog was adapted from a previous paper published by The American Fertility Association.

A BRIEF ANNOUNCEMENT

I am proud to announce that The American Fertility Association has now become Path2Parenthood. Our mission of education, support, and advocacy for all hopeful parents regardless of sexual orientation, gender, gender identity, marital status, or economic status, and to serve those in the military and those with HIV remains the same but we believe is better reflected in this new name. A new online experience will be unveiled this spring where visitors to our website (www.p2p.org) will be guided on a journey to create their family customized to their particular circumstances and needs. We will continue to offer our toll-free support line (888-917-3777), monthly telephone coaching groups, and in-person support groups in the tri-state area around New York City. Please join us on this journey as we join you in your journey to parenthood.