Mind Matters: Infertility, Stigma and Shame - by Sherry Dale (Fall 2010)

INFERTILITY, STIGMA AND SHAME

by Sherry Dale, MSW, RSW
Fall 2010

When you’re experiencing infertility, you feel a number of painful emotions. For many people, one of the most challenging aspects is other people’s negative attitudes, and one of the most painful emotional responses is shame. These two factors may be felt together or separately, but they are always difficult to deal with.

What is Stigma?

Stigma is a “sign of social unacceptability.”1It is a judgment by a social group about what is considered unacceptable in its members.

Throughout the ages, there have always been characteristics, choices, and conditions that are seen as “less than” by society. These judgments are usually specific to the social group and to the time. What is deemed unacceptable by some cultures and groups is quite normal to others, and these attitudes often change over time. Societies may even pass laws forbidding the behaviour that is seen as unacceptable. For instance, interracial marriage was illegal in some parts of the United States until 1967; by 1991, more Americans approved of interracial marriage than disapproved. Public attitudes can shift toward greater stigma as well. Smoking cigarettes was held to be quite acceptable for decades, whereas now in many communities there is a distinct message of its unacceptability in most situations. The public attitude toward impaired driving has become less and less tolerant as awareness of its potential impact has grown.

So “stigma” is the group judgment of what is accepted or not; “shame” is the emotion that may be felt by those persons who are not accepted. The persons who are the target of the stigma may themselves believe that because they aren’t conforming to accepted practices, they are unacceptable. In 1991, an author noted that “the heart of the experience of infertility appears to lie in the inability to proceed with one’s life according to life course norms that are both reinforced by others and accepted as valid by the affected individual.2

In 1985, the stigma of infertility was thought to mainly involve three widely-held public attitudes: 1) the belief that infertility was due to psychological and not physical factors; 2) that infertility was associated with sexual incompetence; and 3) that infertility is a woman’s problem.3

Now, 25 years later, these attitudes are less prevalent, but the stigma may linger in people’s minds. These persistent attitudes can be held by the very person experiencing infertility, or they can be found in their support networks of friends and family, especially in older people who grew up in a time when the stigma was “normal.” This can mean that even if the infertile individual does not personally feel the stigma, he or she can expect to face it in others they may wish to confide in. May says, “Even if we aren't even a teeny bit shamed by our bodies and experiences, the fact we simply can't mention them for fear of people's reaction is just so isolating.”

What is Shame?

Shame is defined as “a painful emotion caused by consciousness of guilt, shortcoming, or impropriety” or “a condition of humiliating disgrace or disrepute”4 or “the painful feeling arising from the consciousness of something dishonourable, improper, etc., done by oneself.5

Melissa says, “Shame is my strongest emotion with infertility. I'm generally a very free spirit - I generally do things without much worry or concern of what others think. But lately I feel emotions I haven't felt since I was a teenager. I feel embarrassed, shameful and not at all in the in crowd. I feel lonely because even my therapist doesn't seem to know what to do with infertility.”

Sometimes, shame can be felt specifically about infertility – other times, it may be related to pre-existing painful feelings related to one’s body or sexuality. If, for instance, a woman has always struggled with feelings of poor body image, infertility can reinforce her feeling that her body is defective or ugly, which can elevate her feeling of shame. If a man has felt ashamed of his body or sexual functioning, a diagnosis of sperm problems can make him feel even more ashamed.

Because infertility is not obvious, one writer says, though “it’s impossible to look at a woman and tell she’s struggling to conceive, many women in that situation may feel ashamed, as if they are fundamentally different from other women.”6

If infertility patients do feel shame about their situation, the burden of their own and other people’s attitudes can be a heavy one. “It's no wonder those of us diagnosed with various infertility factors shrink in shame or disbelief when the news comes. We not only don't want to wrap our heads around not being able to have children easily, we can't discuss infertility or its contributors — endometriosis, varicocele, poor sperm motility, or polycystic ovarian syndrome, to name just a few — in polite society without fear of people recoiling from the ick factor.” 7

It has been noted that male infertility has historically carried more of a stigma than female infertility. In fact, in couples with a diagnosis of male infertility, it’s not uncommon for the woman to tell people that the medical diagnosis is hers, not his.

Talking About It

When someone is experiencing a social stigma that is not obvious to the world, those who feel shame about it may remain silent and try to hide their condition. Those who do not feel shame might still keep quiet about their condition in order to spare themselves the pain of being stigmatized. Others may reject the judgment of the social group and challenge it. When people openly declare their “unacceptable” characteristics and challenge prevailing attitudes, much social change can be brought about.

Historically, it was considered inappropriate for people to openly discuss diseases and medical conditions. Conversations about sexuality and sexual body parts were also not seen as publicly acceptable. Because fertility issues are so closely connected with sexual functioning, the social stigma of infertility has been complex. While people are generally more open now discussing medical conditions and sexual topics, there still may be discomfort in talking about infertility.

“The reason people don’t understand infertility is because we don’t talk about it. We’re embarrassed, ashamed, angry, or depressed, which makes us clam up. To overcome the stigma of infertility, we really do need to start opening up – because sharing our infertility roller coaster can improve our emotional, mental, and physical health. There shouldn’t be a stigma attached to infertility, and the more we talk about it, the less embarrassing it will be.8

Though in past times infertility was typically seen as something to hide and never talk about, in recent decades people have begun to speak publicly about it. The U.S. support group Resolve was founded in 1974. The Infertility Awareness Association of Canada was established in 1990, and originated from an earlier group which began in 1983. These groups provided information and support and encouraged personal and public discussion on infertility. When the discussion about infertility became more open, it was still not always easy for individuals to identify themselves publicly as infertile.

In 1990, actress Jobeth Williams told the Los Angeles Times about her six-year struggle with infertility. She underwent IVF, experienced several miscarriages but did not achieve a successful pregnancy. She and her husband adopted two sons, now young adults.

In recent years, other celebrities have spoken publicly about their struggles with infertility. Actors Courteney Cox, Nia Vardalos, Hugh Jackman, Angela Bassett, Christie Brinkley, Marcia Cross, Robert DeNiro, and many others have accessed fertility treatments. In 2005, infertile couple Uchenna Agu and Joyce Robinson won the television reality show Amazing Race and said they planned to use their winnings to cover further in vitro attempts or adopt. More recently, singer Céline Dion has been quite open about her struggle with infertility, the fact that her 9-year-old son was conceived from IVF, and that she went through six IVF tries in order to conceive the twins she is expecting in November.

Famous or not, not everyone feels ready or willing to speak openly about their infertility. It can be disheartening to raise the topic and encounter others’ old uninformed attitudes. Sometimes, infertility itself simply takes so much energy and focus that there isn’t much left over for increasing public awareness and challenging infertility stigmas. Emily says, “I totally agree that the subject of infertility needs to be out there and discussed openly. However, right now ... at this moment ... I feel like I don't have the strength to carry on this particular battle OUT LOUD. Online or by blogging ... that is the best I can do at this time.”

If you’re having difficulty conceiving, you may be dismayed to encounter lingering evidence of infertility stigma. It may feel empowering for you to challenge these attitudes. Or you may choose to ignore negative attitudes altogether. In this case, a neutral response such as, “That’s one way of looking at it” or no response at all may be most fitting. If you are feeling ashamed of your infertility, it may be helpful for you to address these feelings with a counsellor familiar with infertility issues.

The experience of infertility is in itself demanding and painful enough without the added layer of stigma and shame.

References:
1 http://encarta.msn.com/dictionary_1861715057_561508220/nextpage.html
2 Griel, A.L. (1991). Not Yet Pregnant: Infertile Couples in Contemporary America. New Brunswick: Rutgers University Press.
3 Miall, C.E. (1985). Perceptions of informal sanctioning and the stigma of involuntary childlessness. Deviant Behavior, 6, 383-403.
4 www.merriam-webster.com/dictionary/shame
5 http://dictionary.reference.com/browse/shame
6 Lombardo, M. (2005, Spring). The emotional stigma of infertility. Conceive.
7 Tsigdinos, P. (2008). On Overcoming the Infertility “Ick Factor”. http://coming2terms.com/2008/01/27/on-overcoming-the-infertility-ick-factor.aspx. (In this article, patient quotes are from comments on this article unless otherwise noted.)
8 Pawlik-Kienlen, L. (2008). 5 Tips for Overcoming the Stigma of Infertility. http://theadventurouswriter.com/blogbaby/quipstipscouplesinfertility/relationships/overcoming-the-stigma-of-infertility