Breaking The Shame and Isolation Around Infertility

Breaking the shame and isolation of infertility

Interview with Dara Roth Edney, MSW

Dara Roth Edney MSW, RSW

It’s Bell Let’s Talk Day, and we will dedicate this month’s blog to an aspect of infertility that can be overlooked, the emotional impact. The physical part is generally well known, and for many, an expected part of fertility treatments. For example, when undergoing IVF, people are aware of the necessity for medications, invasive tests, and uncomfortable procedures. But not enough people know and talk about the profound emotions resulting from infertility and reproductive loss. The psychological aspect is as important as the physical in ensuring a patients’ well-being as they go through treatment, and as such, deserves more attention. To raise more awareness, we invited  Dara Roth Edney for an open discussion about infertility and loss, and its emotional toll. Dara is a social worker specializing in reproduction. With almost 20 years’ experience in mental health, Dara helps her clients navigate the emotional turmoil of infertility, and difficult decision-making options. Her professional training along with her personal experience of infertility and surrogacy, provides a unique and empathetic perspective to her clients.

How does infertility impact mental health?

Infertility is a devastating experience impacting every aspect of a person’s life – from their intimate relationship, to friendships and family connections, to their work. Many individuals experiencing infertility compare it to an emotional rollercoaster, when from day to day and month to month, you cycle through feelings of excitement and hopefulness, ambivalence as you wait for news, and then feelings of deep despair and hopelessness when a pregnancy is not achieved or is lost. Much of this time is spent trying to manage these feelings, attempting to stay positive but realistic, preparing for bad news just in case, and struggling to stay hopeful the news will be good. And all this happens while going to daily clinic appointments, maintaining a job and for many, keeping the entire experience a secret.

We live in a culture that tells people, especially women, to “relax” and to “stay positive” as though these things are possible when experiencing something so difficult, and as though a positive mindset can change cycle outcomes. And we live in a culture that often overlooks how distressing infertility and loss is to the non-treatment partner. Quieting down all negative thoughts and worries while trying to remain calm and positive is mentally exhausting and often impossible when going through what for many, is the most difficult time of their lives.

When a cycle ends with bad news, people can be overwhelmed with grief, anger, or confusion. Our culture offers many rituals for acknowledging tangible losses, such as death, but with infertility or early miscarriage, there is no roadmap. The months when you do not get pregnant or when a pregnancy is lost early in the first trimester can feel intangible, the loss of a dream that is invisible to those around you, but that is all-consuming for you. And of course, with this type of loss – the loss of not achieving a successful pregnancy – the next month, the cycle starts again. And unless you take a break from treatment, you must push through the grief, anger and confusion to find enough hope and strength to try again. Women, especially those over 35 and aware of the biological realities of age, often feel that they do not have time to grieve and heal before the next round of treatments.

The emotional impact of infertility is cumulative and magnified with every failed cycle. It affects every aspect of your life and when you add in the cost associated with fertility treatments (and for those living outside of a city centre, travel to a clinic) you get a combination of factors that can be very difficult to manage on your own. A publication out of Harvard Medical School reported that levels depression and anxiety in patients experiencing infertility are similar to those diagnosed with cancer, hypertension or heart disease. Unfortunately, there is still a lot of shame associated with infertility, and people often feel very isolated and alone. Talking about your experience with someone who understands – a friend or family member, peers in a support group, or a professional counselor – can be very helpful in making the journey more manageable.

How does infertility impact your relationship?

Similar to other traumatic life-events, many couples say this brings them closer together. Though of course, at various times throughout treatment if there are disagreement about next steps, it can also tear them further apart. Intimacy can become fraught when sex becomes focused on procreation instead of pleasure, and performance anxiety is common when so much is at stake. The medication women take and the penetrative exams she must undergo as part of treatment can have an impact on her libido. And for couples who have experienced recurrent miscarriage, there can be an underlying fear that sex will lead to a pregnancy, which in turn will result in a devastating loss. For many, sex changes from something that brings them closer, to something that symbolizes the start of another vicious cycle, ending in heartbreak. It is inevitable that a highly stressful situation will impact a relationship, and with infertility, which can be ongoing and with no clear end in sight, it is important that couples work together to support one another. Open communication to problem solve, finding creative ways of supporting one another and maintaining maintain intimacy can reduce stress and feelings of disconnection. The longer you are going through this, the more significant the impact can be on your relationship. Taking time to connect with your partner can be a challenging but crucial element to building and maintaining resiliency.

Are there any differences between women and men dealing with infertility?

Both men and women are affected by infertility, but their experience and expression of it can differ. The is often dictated by the reproductive role each one has, as well as social norms. For example, there is a greater emphasis on women to become mothers by a certain age. Any deviation from this often triggers very personal (and hurtful) comments and questions, which men don’t experience to the same degree. Biologically, women are the ones who undergo the majority of the invasive tests and treatments, and when they occur, miscarriages. And often there is an assumption that infertility is female-based, as opposed to male factor. The physical aspect of fertility treatments and pregnancy result in a heightened focus on women and in a heterosexual relationship, men can often feel sidelined (this can also be the experience of a non-treatment partner, when it is a lesbian couple).  For example, when a heterosexual couple experiences a miscarriage, people often ask the man how his partner is doing, without acknowledging this was his loss as well.

Overall, women tend to be more open about their emotions than men, often confiding in a close friend or family member, whereas men often rely solely on their partners for emotional support. Men often feel that they need to be strong for their partners, and as such, are hesitant to acknowledge their own fears and pain. While men and women may experience various aspects of infertility and loss differently, they are going through this together. It is essential therefore, that the impact of this on both partners is acknowledged, and understood by the medical team and the couple’s broader family and social network.

What can you say to someone who is going through infertility?

Friends and family want to help, but often they don’t know how. Well-intentioned comments and advice can often be insensitive and even hurtful. If someone has opened up about their infertility struggles, but have not specifically asked for advice, please remember, they have a doctor advising them. They are most likely not sharing to ask for advice, but rather, for support. Suggestions about what they can do differently or success stories of other people may not be helpful. They need what all of us need when we are in pain – empathy and tenderness; that you see their pain and you care. Something as simple as  “I am so sorry this is happening to you” and an expression of love can be comforting and helpful, and may be all that is needed. If you want to do more but don’t know what, simply ask and listen.

What is social media’s impact on your mental health when dealing with infertility?

Overuse of social media is linked to low self-esteem, depression, and anxiety in many different contexts and is no different with infertility. Although designed to promote connections, social media can have the opposite effect and make you feel isolated and disconnected from the experiences of others. Before social media, you were only exposed to the pregnancy announcements of close friends. Now however, you are bombarded with picture perfect announcements from everyone across a broad network. Many people take a social media break during this time, deleting Facebook and Instagram. Additionally, access to unlimited information can be overwhelming and confusing. It can be challenging to identify reliable and credible sources. News stories about women getting pregnant after 50 can be very deceiving, especially when the use of donor egg is omitted from the story. When struggling through infertility, it is essential to identify the reliable sources and mute all the background noises which are counter-productive.

But of course, social media can also offer support and resources that beforehand would not have been possible to access to such a large and varied degree. There are online support groups, forums and websites that people find extremely helpful, and for many, may be their only outlet for sharing grief and asking questions to those who understand their experience first-hand. Bell Let’s Talk campaign is an excellent example of using the power of social media to bring people closer together and to raise awareness.

What is your message to someone going through infertility?

Infertility is isolating. When the social group you once found comfort in starts having children, it can be painful and isolating. Finding social connections that understand what you are going through is challenging, and this can be especially true for people in LGBTQ communities. But there are support groups and resources out there. Whether it is an online or in-person peer support group or private counselling individually or as a couple, there are people out there to help you and who understand. The pain of infertility hurts more with silence and  isolation. You do not have to go through this alone.

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