Anxious rumination

Women with infertility reported anxiously thinking about their infertility, often to the point of ‘obsession’. Both the women and mental health professionals described women’s incessant thoughts about the causes and treatment of their infertility and monitoring of their menstrual cycle and symptoms that might indicate pregnancy, to be all consuming. One woman reflected: ‘I was developing a lot of anxiety and spending so much time hovering about this like it was just becoming completely all consuming’ (FG). One health professional considered anxiety to be the most prominent feature of infertility-related distress:

One of the primary emotional symptoms is anxiety… rumination over the uncertainty, and anxiety sometimes about the medical procedures, anxiety related to going to the fertility clinic… Anxiety related to just not knowing. (MHP)

Avoidance of fertility reminders

Many women reported feeling the need to avoid activities and social events that would expose them to reminders of others’ fertility, such as family gatherings where pregnant women, children and babies would be present. Women also described avoiding social media to avoid seeing pregnant persons and birth announcements:

And then all of a sudden, birth announcements…pregnancy announcements start to bother you…You don’t want to go on your social media because you just don’t want to see everybody having fun with their babies and their families and getting pregnant…and you just feel like you’re left behind. (II)

Mental health professionals also reported this avoidance as a frequently observation. “Everything and everyone can be very triggering,” said one. Both women and professionals linked this avoidance of potentially triggering social situations with a gradual increase in social isolation and distancing from once close friends and family members.

Narrowed focus on fertility-related activities

It was mostly mental health professionals who made observations related to this subtheme by mentioning that, over time, women would increasingly focus on their attempts to conceive at the cost of their previously enjoyed activities. Events and plans would be put on hold for the sake of their treatments or ‘in case’ they became pregnant. The professionals also explained that, over time, getting pregnant often became the topic of every conversation within a couple and all actions and activities were solely focused on conceiving and the next steps in the process:

Fertility treatment becomes everything, it consumes their everyday life…A tendency for couples going through fertility [treatments] or struggling with infertility is that that’s all they talk about, fertility and next steps. (MHP)

Relatedly, one woman explained that the scheduling of fertility treatments often made it difficult to plan:

I hate that I can’t plan stuff because we are still doing IVF [in-vitro fertilisation], we have embryos that are still on ice. And so, every try is three months apart and we love to travel but it’s like you can’t book because you don’t know when exactly that next treatment is.… It’s just that lack of being able to plan. (FG)

Excessive information seeking

Spending an excessive amount of time seeking information about the causes and potential treatment of infertility, usually via the internet, was described by both women and mental health professionals: ‘Sometimes I do see… pure obsession, it can actually look like where the person is frantically researching online repeatedly for explanation as to why they haven’t gotten pregnant’ (MHP). Health professionals also voiced concerns that this constant searching for answers was potentially harmful for women as the information they obtained was often of questionable validity.

Summary

Every woman and health professional interviewed emphasised elements of anxiety related to infertility. Women who had undergone fertility treatments related their anxious rumination to the success of the many procedures involved in the treatment process while women who had only struggled to conceive without medical intervention reported being very focused on the different phases of their menstrual cycle, identifying signs of fertility and looking for signs that a cycle was positive. This excessive mental energy devoted to all things infertility, coupled with a desire to avoid witnessing evidence that others are conceiving without difficulty, resulted in a decreased engagement in previously enjoyed activities and an increase in social withdrawal. Anxiety as a theme was more prominent in focus groups and face-to-face interviews when compared with interviews conducted over the phone. We hypothesise that perhaps researchers were better able to build rapport in face-to-face interactions, allowing women to feel more comfortable sharing their challenges.

Emotional lability

As common as the confirmation of anxiety was the description of infertility as an ‘emotional rollercoaster’: at the start of each cycle, hope and excitement would build, only to be met with extreme disappointment and grief following each negative test or miscarriage:

Every month, you go through this cycle of excitement or hope and then followed by no success… You get depressed, you get very discouraged or very down…and then you think, ‘Oh, I’m not going to invest any more energy’, but then just by nature, you do. And then you get hopeful and excited again, and you just go through this rollercoaster of emotions that way. (II)

Women who had undergone fertility treatments explained that their mood was highly dependent on the outcomes of each step in fertility treatments: ultrasounds, egg retrieval and embryo transfer. Some women also reported that the hormones taken for infertility exacerbated their emotional lability: ‘The hormones that they have you on wreak havoc with my entire being, I felt crazy’ (FG 2). Other women reported being overly sensitive or irritable in their daily lives because of their high stress levels, directly related to their struggles to conceive.

Helplessness

Several women stated that one of the biggest challenges related to infertility was the feeling of being completely helpless in the process of trying to conceive. Women reported feeling extremely frustrated by their lack of control over the outcome of any given cycle. One woman participating in a focus group lamented: ‘One of the hardest aspects is the helplessness that I feel…because most of the things in my life—it’s like okay, you do A B C D and you get this outcome but with this there’s just no guarantees.’

One participant explained that the sense of a lack of control over the process led her to even contemplate not taking her medication so that she could at least have ‘some sense of control over destiny’. Women also expressed frustration at the lack of information and choice regarding their treatment options: ‘I feel like they have a very set order [in fertility clinics but] they are not going to tell you why this is the order in which they do things’ (FG). Mental health professionals similarly remarked that women were given little opportunity to determine the course of their treatment in medical settings.

Emotional exhaustion

Female participants reported that the constant alternation between hope and despair, along with their feelings of helplessness, led them to become emotionally drained. One woman explained that fertility treatments had drained her to the point of requiring a mental health break from work: ‘I went to the doctor and I said to her, ‘I need to get off work, I need to be on stress leave because I can’t do this anymore’’ (II). Another woman recalled a time when she had ‘hit rock bottom’ and became suicidal because of her difficulties conceiving.

Summary

Nearly all women reported that their mood dipped at certain points throughout their cycle each month, particularly after a negative outcome. Feelings of complete helplessness over the process and outcome of each cycle were also very prominent. A smaller subset of women, however, related the constant up and down from hope to despair to the development of emotional exhaustion and what sounds like clinical depression.

Unmet expectations for self and one’s future

Many of the women reported an enormous sense of loss as they reflected on their childhood dreams of being a mother. One woman remembered:

When I was a kid, I wasn’t dreaming about being a doctor or vet or thinking about the perfect wedding, I was thinking about being a mom. And it was just a sense that the vision of what I had for my future wasn’t possible. (FG)

Mental health professionals added that for many women, motherhood was so closely tied to their identity as a woman that their infertility diagnosis threatened their very sense of who they were as a person:

The number one thing that I see and can identify hands down is there is an attack on their identity and their sense of self, the narrative that they believed about who they were, what their reproductive story was, and they feel very shattered from that because this story is not playing out. (MHP)

Health professionals also reported that women having to pursue third-party reproduction also grieve the loss of pregnancy in the case of surrogacy, and the loss of genetic connection to their child in the case of egg donation.

Self-blame

Several women reported believing that they were partly to blame for their infertility, particularly among women with female factor infertility: ‘You have to deal with the mental aspect of knowing…that I was the reason that we didn’t have kids… If [my husband] was with someone else, he could be having those kids’ (II). Women also reported that they tended to question whether any of their behaviours might be contributing to their diagnosis or a failed cycle. One woman, a long-distance runner, recalled: ‘A few of my IUIs [intrauterine inseminations] were right after doing a very long race and so I felt like maybe that’s why it didn’t work. I was blaming myself that it didn’t work’ (FG). Mental health professionals corroborated these reports.

Shame

Many women reported feeling ashamed of their diagnosis of infertility, seeing themselves as ‘broken’, leading them to keep their struggles a secret or to share with only a few close others: ‘If I had cancer, it would have been open, and we could have talked about it and my community would have supported me. But when it’s infertility, you feel different, isolated, and embarrassed, and ashamed’ (II). Mental health professionals echoed the same sentiment, highlighting the difference between how infertility was perceived compared with other medical conditions.

Summary

Within this theme, we see that infertility often triggers an existential crisis of sorts: a profound questioning of what it means to be a woman in the absence of fertility and the potential for motherhood. Women were left wondering what their lives would look like and what value it might have if motherhood was never achieved. This seems to be particularly the case for women who reported having wanted to be a mother since childhood.

Partner differences in coping

Women described their frustration related to differences in coping between themselves and their partners. It appears that women often took a more active role and expressed their emotions more openly than their partners, leading them to perceive their partners as being less emotionally invested in the goal of conceiving:

It makes me feel like I’m the one that’s always worrying and stressing and thinking about things and making appointments and tracking my cycle and kind of carrying the burden in a way…He’s just kind of very laid-back about the situation…it gets a little frustrating for me. (II)

Another woman reflected on her and her husband’s different ways of coping with grief following a miscarriage:

The first time the miscarriage happened, my husband kind of grieved separately because he didn’t want to grieve in front of me because he thought that it wouldn’t help how I was doing with it…so I just thought like, ‘Hey, we had a miscarriage, and he’s fine.’ (II)

Mental health professionals agreed that many challenges within the couple related to partners not ‘processing’ events surrounding infertility at the same pace.

Negative impact on couple’s sex life

Women commonly reported a deterioration of the couple’s sex life because, over time, the purpose of sex became solely to achieve conception rather than intimacy or enjoyment: ‘it just seems like work’ (II). One mental health professional described sex as becoming ‘transactional’ in nature and reported that women often found it difficult to engage without thinking about the goal of conceiving.

Stress related to financial burden of fertility treatments

Given the high costs of fertility treatments, for the most part not covered by medical insurance, women reported that strained finances became a prominent topic of conversation among couples pursuing assisted reproductive technologies:

Conversations around the cost of everything just because that puts a lot of strain on our relationship…How can we afford it?…How can we make it work? We don’t really have time to wait and save up for this, we just have to figure it out now. (FG)

Concerns about finances would also lead to stressful discussions around the feasibility of continuing treatment. The same sentiment was echoed by the mental health professionals who described the financial strain brought on by fertility treatments as being a challenge for most couples.

Couple disagreements on next steps

A few women reported that tension within the couple arose due to differences in opinion about next steps to take in trying to conceive: ‘I got divorced because… I think he was done before I was, he just didn’t want to do it anymore’ (FG). One woman recalled that she and her husband went into a doctor’s appointment with very different intentions and expectations, which led to conflict afterwards:

I went in thinking like, ‘Okay, we’re going to get the information and move forward.’ He went in thinking, ‘Okay, I'm going in to get the information and then make a decision on that.’ So, we were on different pages going in. (II)

Summary

While a few women reported that their relationships were strengthened overall because of going through the challenges of infertility together, all women referred to some difficulties within the couple at one time or another. A subset of women reported that their relationship had been severely tested (or severed) by their struggles with infertility and these serious conflicts seemed to be primarily related to differences in opinion regarding next steps to take regarding treatment.

Strained relationships with friends and family

Women explained that relationships with friends and family were often strained in the context of infertility, in part due to the barrage of unhelpful comments and questions they received from well-meaning loved ones. One woman explained why she felt that she could not open up to her friends about her infertility:

I have a lot of friends who mean well, and they just keep saying it’ll happen…I just don’t know what they want me to say to that… I feel like if I talk to them about it, they’re just gonna be like, ‘Oh just stay positive’. (FG)

Several women reported that their family members often showed a lack of understanding about the emotional pain they were experiencing, even when they were open with them about the challenges they were facing: ‘All my mom said was that I was a b**** that Christmas. And so, there was just no understanding’ (FG). Participants also struggled with feelings of envy, jealousy and resentment towards friends or family who had conceived easily, which also contributed to distance with once close loved ones:

The relationship with my brother is still pretty strained. Him and his wife actually ended up getting pregnant five weeks before I did, and they only tried for a couple of days… and then got pregnant right away. …I felt like they didn’t deserve their pregnancy because they didn’t have to work for it. (II)

Social stigma

Women reported that they perceived a great amount of social stigma related to infertility, which created anxiety around discussing it openly: ‘I felt reluctant to tell friends and other people. And I still haven’t told everyone in my life…just because I didn’t want to be an object of pity, I didn’t want anyone to think I was a barren woman’ (II). Other women refrained from telling others about their infertility because they did not want to be judged by friends and family who might comment on the woman’s potential role in contributing to her problems conceiving.

Social isolation

An increase in social isolation seemed to be a consequence of several processes—women’s avoidance of fertility reminders (from theme 1), their attempts to avoid unhelpful comments and questions from others, and the pressure to hide their preoccupation with their infertility: ‘I feel like it kind of closed off some of my opportunities for healthy, normal socialisation…and I think to some extent, that’s impeded my ability to form closer relationships with people too’ (II). For example, one participant recounted avoiding get-togethers at bars or pubs in order to avoid questions about why she was not drinking alcohol:

One of the things I find really difficult about trying to conceive is you can’t just go for a casual night out with friends and have drinks… I have tried going out and just drinking non-alcoholic drinks, but inevitably, someone tries to order another round or says, ‘Why don’t you want to do this?’ (II)

Another participant recalled missing out on a family get-together because a family member announced that she was pregnant at the event and she did not want to show her family how upset she was: ‘I so distinctly remember sitting in my bedroom and just crying… I knew I couldn’t leave our room’ (FG).

Feeling dismissed by health service providers

Several participants recounted feeling disappointed with the service they had received from their mental health provider. One woman recounted her encounter with a mental health professional specialising in infertility:

She gave me quite a cookie cutter approach to her counseling… like, you’re going through infertility so you must be experiencing this and this and this. I was like ‘Oh no, I am not experiencing that.’ (II)

In addition, women described feeling dismissed by their reproductive healthcare service providers who sometimes minimised the emotional pain associated with what they were experiencing. One woman seeking care for a suspected miscarriage remembered:

My family doctor… He told me he didn’t think I was miscarrying. He also said, ‘If you are, then it’s not really a big deal because you’re young and you can keep trying. I’ve had patients that have been trying for years and years and years and you really shouldn’t be worried yet’. And that’s really difficult and frustrating to hear. (II)

Mental health professionals echoed the same sentiments, remarking that younger women are especially prone to receiving dismissive comments from the medical community:

Women with a female factor diagnosis who are very, very young often have a very hard time in the treatment process because they’re often not taken seriously…I’ve heard many specialists tell them, ‘You have lots of time, don’t worry about it, it’ll happen for you’, which can be really quite dismissive of their feelings and their coping. (MHP)

Summary

Through this theme, it became clear that women’s tendency to distance themselves from others and the activities they used to enjoy was partly related to a desire to avoid having to discuss their infertility with others, whom they generally found to be unhelpful in providing emotional support. Several women perceived a lack of compassion and understanding of the emotional aspects of infertility among both mental health and reproductive health professionals, leading them to feel truly alone in coping with their emotional pain.