Hyperemesis gravidarum: who cares?
Healthcare Counselling and Psychotherapy Journal, January 2018: Volume 18, Issue 1

Have you heard of hyperemesis gravidarum (HG)? I hadn’t. The first time I encountered these words was when I visited my GP, five weeks pregnant with my first child. He explained that this medical condition was the reason that I was vomiting every time I swallowed food or drink, experiencing back spasms due to relentless fits of uncontrollable dry retching, and battling nausea so debilitating that I was unable to move my head without the room spinning. In this pregnancy and my next, it was the reason I struggled to function physically and to cope emotionally.

For 17 weeks, I was rarely able to leave my home and I struggled to focus on the longed-for baby inside me because I didn’t feel pregnant – I just felt ill. Hearing other pregnant women talking about ‘blooming’ or ‘glowing,’ as their lives just went on as usual, I began to feel increasingly isolated, low and abnormal. Being asked by so many well-meaning friends if I had tried ginger or travel sickness wristbands, I sensed the reality of my situation was just not being acknowledged or understood. Sobbing, when I finally admitted that, with HG, I could no longer look after my three-year-old son by myself, I felt like a negligent and estranged mother. Physically heaving at the smell of shampoo on my partner’s hair or toothpaste on his breath and watching him empty my sick bowl into the toilet yet again, I became a patient rather than a wife. Having to let colleagues take over my client work, I lost my sense of being a useful member of society. I managed to endure these four-month periods of HG physically and emotionally by focusing on surviving one day at a time.

Several years on, I was still perplexed by this all-consuming question: while the healthcare professionals with whom I came into contact did a wonderful job of measuring my ‘bump’, my urine and my blood pressure, and providing the necessary physical care, why did no-one ask me how I was feeling emotionally? As a counsellor and an HG survivor, I wanted to understand more about the emotional effects of HG and I was curious about other women’s experiences of this pregnancy-related illness.

Pregnancy sickness research has been dominated by pharmaceutical approaches to physical care. Studies have been predominantly quantitative and biologically orientated,¹ with minimal reference to women’s voices and the emotional impacts of HG. Studies of emotional symptoms following HG pregnancy remain limited.² Consequently, I decided to focus my postgraduate counselling research study³ on the therapeutic value of emotional expression around HG. Ten women who had previously lived with HG participated in one-hour qualitative, semi-structured interviews. A number of themes were identified around the emotional impacts of HG:

Overwhelming debilitation: one participant, Joan, described living with HG as ‘so overwhelming; it just debilitated me for months; I couldn’t do anything else but lie in bed’. Another, Freya, recounted ‘the fear and the sadness and the uncertainty of it all’. Ellie spoke of the sense of seclusion, saying, ‘I was just so in my own little bubble of awfulness, it was truly terrible, truly, truly awful.’

Loss and disruption: women told of numerous disruptions and losses in their HG illness narratives. These included loss of role, with Ann describing, ‘not being able to do this and that and cook and whatever’. Greta spoke of the loss of social contact, recalling, ‘It’s very lonely, I’d just lie at home on my own for hours, just lying in that bed’. She also mentioned the loss of quality time with older children, explaining, ‘I made lists of days out we were going to have together when I was better, things to look forward to.’ Joan spoke of loss of physical agility, saying, ‘I went from skiing in the mountains to shuffling down a hospital corridor with a drip in my arm in 10 days.’ Cath described a loss of agency, with the words, ‘I didn’t want to be admitted [to hospital], I wanted to control it myself’. Donna mourned her anticipated ‘normal’ pregnancy, describing it as, ‘the kind of pregnancy that I wanted but didn’t have’. Bea commented on the loss of relationships, observing that ‘people have lost friends and family due to people not understanding’. For Freya, the grief was around the lack of freedom to disclose pregnancy in her own timeframe, due to symptoms. She lamented, ‘I never had that ability to keep it secret for the first 12 weeks.’

Shame and reticence: for some women, there was a sense of shame around their HG. Holly reflected, ‘I felt embarrassed the whole pregnancy, embarrassed that I was that ill, that I wasn’t enjoying being pregnant, of how I looked.’ For Ellie, there was shame around feeling different due to her illness experience. She remarked, ‘I felt like I was a freak, like I can’t cope and everybody else can manage.’ Ann described how her emotional experiencing of HG did not fit with the dominant discourse around transition to motherhood, asserting, ‘There’s so much we’re not allowed to say, we’re not allowed to feel, when we’re pregnant.’

Somatic disconnection: a number of participants described a sense of separation from their bodies in their HG illness. Ivy encapsulated this with her perception that, ‘I felt very much like an observer at times in my pregnancy, like things were happening to me and I wasn’t in control of it.’ For Holly, this was accompanied by a loss of somatic agency: ‘When you’re that ill, you feel totally out of control of your own body.’ Donna reported a disconnect from her sense of self, which she described as, ‘That sedated feeling of it not being me’.

Impact on relationships: HG impacts on women’s relationships with key others, and it can leave them feeling desolate: Cath spoke of her relationship with her partner, recollecting, ‘I felt really isolated because he couldn’t support me.’ Ann felt belittled and described how her sister could not relate to her experience: ‘She just didn’t get it. She’d had three pregnancies and didn’t have a day of nausea in any of them so she just didn’t understand.’ Greta felt alienated from her friends, and conceded, ‘I find it really hard to be around people who are having normal pregnancies, when they moan about their very ordinary pregnancy sickness while they’re having a meal or doing normal things.’

Destabilised maternal role identity: HG can destabilise a woman’s emotional connection with her baby in utero. Donna described how, ‘It made it very hard to bond at that point in the pregnancy.’ For Greta, this affected her enjoyment of the transition towards motherhood. She explained, 'I couldn’t look forward to the baby at all because I couldn’t find any joy in that. Obviously, when he came, I felt differently.’ It can also affect a woman’s parenting of previous children, as Ellie confirmed, claiming, ‘I wasn’t a very good parent, I just used to wait for my husband to get home so I could go to bed; it was awful.’

Minimisation of HG by others: several participants reported that their HG experience had been minimised by other people. Examples cited include: ‘It’s just a bit of morning sickness, why can’t you cope?’ (Ivy); ‘Oh well, no wonder you’re ill, you’re not eating’ (Greta); and ‘she’s crazy, she’s exaggerating’ (Holly). In some cases, such comments resulted in women undervaluing their own lived experiencing of the illness. Freya captured this aptly, commenting, ‘Sometimes it doesn’t feel real because of the way it’s treated and the way it’s seen.’

Cognitive impact: many women find that the cognitive impact of HG leaves them unable to fully focus. Holly recalled, ‘It feels so stressful and you can’t process it all and you can’t think properly.’ Ellie found it hard to engage, reasoning, ‘You just withdraw into yourself.’

Feeling unheard and unacknowledged: in the context of their HG experience, women described feeling unnoticed, with Ann realising, ‘I don’t really feel like I was ever heard.’ Donna described how she felt unacknowledged, suggesting, ‘It’s quite an unseen illness; people don’t want to see it.’ Greta felt misunderstood, pointing out, ‘Even well-meaning people that really love you, or professional people, didn’t get it.’

Anxiety around further pregnancy: the distress inherent in HG can render women unable to contemplate further pregnancies. Ellie captured this in the words, ‘I’d have to be really crazy to do it again, I couldn’t put my family through it; I couldn’t put my body through it.’ For Joan, this meant limiting her family size. She maintained, ‘My experiences were just so horrific, I wouldn’t want another child.’

Inadequate professional emotional healthcare: while Joan described her GP as ‘brilliant and surprisingly engaged’, seven participants shared examples of inadequate emotional support from healthcare professionals, in terms of their HG symptoms. This left them feeling overlooked. Cath stated, ‘A lot of the healthcare professionals that I encountered weren’t interested that I’d got HG. I was feeling so sick all the time and it was really getting me down and they just sort of ignored it.’ Bea felt neglected, maintaining, ‘I experienced so much trauma, and these things weren’t picked up; nobody seemed  to be bothered; I know that more could have been done for me.’ For Ivy, this resulted in dissatisfaction. She told me, ‘They didn’t treat me as well as they should have done; I should have shouted louder or kicked up more of a fuss, but I was just too weak.’ Holly described how she felt abandoned, expressing, ‘There wasn’t anyone for support; I just felt totally isolated.’

These findings are consistent with those of the first British National Conference on NVP (2010),⁴ which highlighted the lack of professional healthcare support offered to women, describing pregnancy sickness as ‘underappreciated’. The extant literature outlines how women’s accounts of their HG suffering are often minimised⁵ or disbelieved⁶ by maternity workers, and a third of women with HG describe their healthcare providers as uncaring.⁷ Power et al⁸ document the ‘unhelpful attitudes’ of medical practitioners that impede women’s access to ‘timely and appropriate care’, with women often perceived as ‘time wasters or someone else’s responsibility’.

Emotional impacts persist post pregnancy

HG is clearly not something that women are able to instantly recover from or forget about with dissipation of nausea and vomiting or end of pregnancy. Emotional recuperation following HG is an enduring and complex process and the emotional impacts of HG can persist with cessation of physical symptoms, into the post-partum period, and months and years beyond. In the sample interviewed for this study, this ranged from one to nine years. Joan declared, ‘I suffered then and I’m still suffering from it now; it’s something that’s really quite major in my life.’ Ivy echoed this, remarking, ‘I had quite a lot of other pregnancy complications as well, but emotionally, it’s always the sickness I go back to.’

Participants described experiencing flashbacks, with Cath stating, ‘There are certain things like smells and songs that bring it all back to me.’ Donna told me, ‘I would relate it to post-traumatic stress. My Uncle has got PTS after being in Iraq and we often talk about the same things; the symptoms are very similar.’ Holly described an altered sense of self, claiming, ‘It changed me as a person’. For Freya,  there was a lack of resolution, and she acknowledged, ‘There’s still more to think about and go through.’

A  psychotherapeutic approach to HG healthcare

HG is an emotional, as well as a physical, lived experience. As a counsellor, having empathically witnessed these women’s stories, I was left wondering about the potential role of the counselling profession in offering a more effective level of emotional care to women, both during and following HG pregnancies.

Wall⁹ advocates for research that makes available ‘evocative stories of experience that contribute to our understanding of the social world and allow us to reflect on what could be different because of what we have learned’.

Having identified a lack of specialist psychotherapeutic support options for women around HG, and feeling ethically compelled to reflect on how current modes of practice might be improved, my research findings led me to set up the UK’s first counselling service for women affected by pregnancy sickness. It is early days, but feedback from clients thus far suggests that counselling in the context of HG is something that is experienced as valuable and beneficial, both during and following the illness experience.

While voluntary agencies such as Pregnancy Sickness Support provide vital assistance to women in terms of information, advice and peer support, formal counselling is warranted where emotional symptoms are clinical. This might include postnatal depression or PTSD following HG, bereavement following termination of a planned pregnancy due to HG, coping strategies around anxiety or depression in HG, and issues around trauma, self or identity. Counselling aims to alleviate distress, reduce isolation and increase personal resilience in the context of the HG illness experience.

McLeod¹⁰ refers to a ‘reconstruction of practice’ as ‘new groups of people seek counselling’ and the importance of maintaining an empowering and ‘user- friendly’ approach. This might involve, for example, counselling a woman by telephone if her vomiting is such that she is unable to leave her home, or enabling her to bypass counselling service waiting lists in order that support is available while HG symptoms are at their peak.

Bochner¹¹ describes how illness stories ‘bring suffering bodies out of the darkness … in the name of the right to speak and the longing to be heard’, since ‘ill persons want to know that their suffering matters’. My own lived experience of HG, my academic research around it, and my counselling practice with women currently suffering from this distressing and debilitating medical condition, all suggest that professional healthcare that places an increased value on emotional support is not only needed, but long overdue. For clients who are affected by HG, the provision of a safe, therapeutic space where they can have their suffering acknowledged, can significantly facilitate emotional resilience and emotional recuperation. When women are currently suffering or have survived the illness experience of HG, as counsellors we are ideally placed to empathically hear their stories.

Michelle Nicholson is a BACP accredited counsellor, employed at the University of Edinburgh Student Counselling Service, and founder of Hyperemesis Counselling, a specialist service for women affected by pregnancy sickness.

References

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2 Christodoulou-Smith J, Gold JI, Romero R, Goodwin TM, MacGibbon KW, Mullin PM, Fejzo MS. Post-traumatic stress symptoms following pregnancy complicated by hyperemesis gravidarum. Journal of Maternal-Fetal and Neonatal Medicine 2011; 24(11):1307–1311.
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