For this year’s Maternal Mental Health Awareness Week, we’d like to draw attention to the experience of having an eating disorder whilst being pregnant or having just given birth, and the unique complexities associated with this stage of life.
In effort to widen this non-judgemental, accepting space in which some of the more unspoken aspects of motherhood can be shared and considered, Orri spoke with Wednesday Child’s Perinatal Lead, Abigail Reynolds.
Below, she shares an insight into her personal experiences of being a mother and navigating pregnancy, as well as what vital work Wednesday’s Child are doing to support mothers and families in eating disorder recovery.
Could you take a moment to introduce yourself?
I am 38, have two young children, and am lucky enough to live by the sea in beautiful Edinburgh. I have a background in languages, education, and administration, and since experiencing severe mental illness in my early thirties, I have been drawn to working in the mental health sector.
As well as co-ordinating a large counselling service part-time, I am also Perinatal Lead for Wednesday’s Child (a UK-wide not-for-profit eating disorder support organisation) where my work focuses on raising awareness, increasing understanding, and developing and delivering training and education around the subject of eating disorders during pregnancy and beyond. In addition, I am an expert by experience for the Maternal Mental Health Alliance, of which Wednesday’s Child is a member organisation, and a training partner for the Institute of Health Visiting.
What was your experience of perinatal eating disorder and recovery?
In 2019 I found myself pregnant with my second child – delighted, excited, but utterly terrified. The source of my fear? What felt like the impossible task of keeping both myself and my baby safe as I faced the prospect of navigating pregnancy and the postpartum period with a life-consuming eating disorder.
Having developed an eating disorder very suddenly and extremely rapidly when my older son was one, I didn’t receive a diagnosis or treatment until three years later when, at eight months pregnant, I reached physical and psychiatric crisis point. I had expressed concerns over the degree to which food, exercise and weight were dominating and negatively impacting my life many times to a range of healthcare and perinatal practitioners, but was repeatedly told I couldn’t possibly have an eating disorder because I was still a “healthy” BMI. The mental torment of endless disordered cognitions, compulsions, and the mental and physical energy required to satisfy the ever-increasing demands of a disorder which convinced me that my worth was entirely and inextricably linked to my ability to deprive myself of nourishment and flog myself with excessive exercise rituals, were considered irrelevant by those charged with my care. This wasn’t down to any individual fault or a lack of dedication, but a result of the fact that healthcare professionals, including perinatal professionals, receive next to no education or training about eating disorders.
When I miraculously conceived my second baby despite my undernourished body not having ovulated for nearly years, I hoped that my body and mind might somehow…reset; that factory settings would be restored and the fiercely protective, hormone-enhanced love I had experienced in my first pregnancy would be strong enough to snap me out of my disorder, but instead my life became a constant tug of war between the part of me which wanted more than anything for this beautiful baby to thrive, and this untouchably powerful force which overrode every healthy, intuitive, and protective instinct I had.
What really characterised my experience of perinatal mental illness was a sense of feeling utterly alone and misunderstood. I knew something was horribly, dangerously wrong, and yet those charged with my care were telling me I was absolutely fine; that my baby was growing so I “must be managing”. I could find no resources or support which suggested I was experiencing something which, as it transpires, nearly 13% of women* in the perinatal period will experience to some degree during this already very vulnerable and challenging time. Eating disorders thrive on secrecy, shame and low self-esteem. No wonder then that with no help available, my illness escalated and the risks to both me and my baby increased.
…as it transpires, nearly 13% of women* in the perinatal period will experience to some degree during this already very vulnerable and challenging time. Eating disorders thrive on secrecy, shame and low self-esteem.
Fast forward three years and despite a global pandemic having brought great swathes of additional challenges, I am in a much, much better place, both physically and mentally, thanks to excellent NHS eating disorder treatment and additional invaluable support from a Wednesday’s Child befriender. I am delighted to now be delivering perinatal-specific work for the organisation, where in my role as Perinatal Lead I have been able to use both my lived and career experience to begin to address the deafening silence which surrounds the existence and prevalence of eating disorders during the perinatal period.
At Orri, we work closely with families in our treatment. What support did you and your family receive? If none, what did you need?
I am hugely fortunate to have a loving, supportive partner, who was desperate to help me recover and see me return to the healthy, funny, caring and spontaneous version of myself he and I had both seen disappear during the course of my illness. Being the partner, parent or carer of someone going through an eating disorder can be the toughest, most isolating thing. That desperate desire to fix things, make your loved one better, the shock and pain of having seen the person you knew and loved become entirely unrecognisable, the constant fear of things spiralling, of the worst happening. And, in this case, my partner’s desperation to protect our children and keep them safe and healthy, as well as me, when sometimes it felt like those two things were directly at odds with each other.
My husband felt a huge amount of guilt and a weight of responsibility, yet he received very little support from those charged with my care. On occasions when his fear and anxiety became unbearable, he did call my team for reassurance that they were indeed going to keep me safe, and that they had a plan, but above all what he needed was practical, relevant guidance on how to navigate the minefield of mealtimes, exercise routines, panic attacks and hopelessness that characterised my illness and journey to recovery. Any books or resources he was recommended were aimed at parents of teenagers, but the relationship dynamics within a romantic and co-parenting partnership are wildly different to those of a parent-child relationship, so often these resources served only to make my partner feel even more isolated and confused.
In addition, my older son was five when I was diagnosed and began treatment – old enough to have a basic understanding of what was going on, and fears and anxieties of his own. Although my partner and I did our best to reassure, comfort and love him through it all, as well as explaining what we could about the illness in age-appropriate terms, I do feel that there is a real lack of support and resources for the wider family unit, including children.
What work are you and Wednesday’s Child doing, to promote this care?
I wish my experience of an eating disorder during pregnancy and early motherhood was an anomaly, but sadly the statistics tell a different story. 16% of pregnant women will have experienced an eating disorder at some time in their life**, and of those, 50% will relapse within 12 months of giving birth*** These aren’t small numbers, and this relapse rate shouldn’t be inevitable. By improving awareness and increasing knowledge of eating disorders amongst those working with this group of people, we hope that more women who are struggling will get the help they need to keep both themselves and their babies safe and well during this time.
I wish my experience of an eating disorder during pregnancy and early motherhood was an anomaly, but sadly the statistics tell a different story. 16% of pregnant women will have experienced an eating disorder at some time in their life, and of those, 50% will relapse within 12 months of giving birth.
There are two main strands to the perinatal services Wednesday’s Child delivers: education, training and resources for professionals working with new or expectant parents, and support for women and their families impacted by an eating disorder during pregnancy or beyond.
As Perinatal Lead, I design and deliver bespoke training for groups of healthcare professionals – from health visitors and midwives to medical students and perinatal mental health specialists – offering a wealth of lived experience insight, valuable clinical skills and Q&A sessions to ensure that those attending leave feeling much more confident and equipped to support women either experiencing or at risk of developing or relapsing into an eating disorder during this already very vulnerable period. The feedback generated by these training events is consistently excellent, with many professionals highlighting how meaningful their increased knowledge and understanding has been in terms of impacting their future practice, and their desire to share and implement the learning both amongst colleagues and more widely.
Wednesday’s Child has also created an informative, engaging and unique e-learning module for professionals working with new or expectant parents, simply entitled Eating Disorders in the Perinatal Period. Again, with lived experience contributions from a diverse range of women and their partners, and valuable practical guidance, the module seeks to dispel myths and preconceptions, and to increase knowledge, understanding, and confidence. The module is free (though donations to support Wednesday’s Child’s work are hugely appreciated) and the very high numbers of professionals accessing the module is indicative of just how needed and appreciated this resource is. It has been equally gratifying to receive excellent feedback from prominent institutions such as the Royal College of Psychiatrists, NHS Education and the Institute of Health Visiting, and to see the module being recommended in the good practice guides of a diverse range of organisations and services.
For new or expectant parents who are themselves suffering from an eating disorder, or concerned about the risk of relapse the perinatal period presents, Wednesday’s Child has developed two e-learning modules addressing these issues – one for people who are pregnant and one for those who have recently become a parent. These resources aim to reduce the feelings of isolation, guilt and anxiety which new or expectant mums might experience, and to empower them to prioritise their own health and needs, as well as their baby’s.
Wednesday’s Child also offers a free befriending programme, and we have several volunteers who have themselves experienced – and recovered from – eating disorders during the perinatal period available to offer empathetic, non-judgemental and practical support to anybody struggling.
We have plenty of new resources and ideas currently in the planning stages too, and Wednesday’s Child has recently become the only member organisation of the Maternal Mental Health Alliance specialising in eating disorders, so I’m excited to see how this area of our organisation’s wide-reaching and impactful work develops.
Attention to perinatal care sounds vital in eating disorder treatment. What do you think could be improved in this field for people, like yourself, who experience difficulties?
I count myself very lucky that once I was finally able to access treatment, my eating disorder team was incredibly flexible and understanding of my need to care for my baby and older child at the same time as engaging in intensive community-based treatment. From enabling me to have the vast majority of my appointments at home and even holding my baby while I wept my way through meals, to not batting an eyelid as I breastfed my way baby throughout therapy sessions and blood tests, I have absolutely no doubt that without that willingness to adapt, I simply would not have recovered.
Unfortunately, in my role at Wednesday’s Child, I hear from many women who are not so fortunate. Only last month I spoke to a new mum who had finally made it to the top of a lengthy waiting list for treatment, only to be told that the service was wholly unwilling to make any adjustments in order to make that treatment accessible to a woman with a three week old, breastfeeding baby. She was told that her “unwillingness” to leave her baby and travel an hour each way to appointments was indicative of “a reluctance to engage with treatment”.
The reality is that unless services are willing to be truly person centred, and to view the person suffering and their recovery within the wider context of their circumstances – including their relationships and responsibilities – many people will be unable to access the treatment they need and deserve. Mothers in particular often resign themselves to suffering in silence in order to minimise any potential disruption or distress that treatment and the recovery journey might bring to their family, and there are specific, well-documented barriers which make a mother less likely than most to seek treatment for an eating disorder. So when new parents do reach out for support, any reluctance on the part of services to make reasonable adjustments to accommodate the unique needs of people suffering during the perinatal period is liable only to feed into pre-existing feelings of guilt, fear and shame.
The reality is that unless services are willing to be truly person centred, and to view the person suffering and their recovery within the wider context of their circumstances – including their relationships and responsibilities – many people will be unable to access the treatment they need and deserve.
What advice would you give to expecting mothers or new mothers who struggle with an eating disorder/disordered eating?
- Be mindful of the potential triggers pregnancy and new motherhood might throw up – from morning sickness, cravings and heart burn to weight gain, uninvited comments about your body, feeding advice and sleep deprivation, to huge shifts in relationships and identity, and societal pressure to “lose the baby weight”, thinking in advance about how these things might potentially impact you, and discussing these with your midwife/health visitor and your loved ones, will be helpful in empowering you to establish or maintain habits and boundaries which will protect both you and your baby
- Self-compassion can feel hugely challenging, but focus on trying to treat yourself with as much kindness, respect, tenderness, and fierce, protective care as you do your newborn baby
- Remember that struggling with a disordered relationship with food, exercise or your body is NOT your fault, and you deserve support and understanding.
- You may have to advocate for yourself and your baby. There is a self-confessed lack of knowledge and understanding of eating disorders amongst maternity and perinatal professionals. Unfortunately, you may need to fight for the support and care which is right for you, especially if you do not fall into the stereotype of “someone with an eating disorder”. But remember: seeking help in starting or maintaining recovery from these serious illnesses is a courageous, generous and creative thing to do for your whole family
- You are not just an incubator – you deserve regular, adequate and satisfying nourishment and rest whether or not you are carrying a baby
- Much of the generic advice given to new or expectant mums may not apply to you. Whether it’s advice on staying active during pregnancy, recommended weight gain or calorie intake figures or guidance on how to feed your baby, try to work with your care team to make sure you are establishing habits and routines which are right for YOU
- There is no such thing as a “perfect mum”. Be mindful of the accounts you follow on social media, and the comparisons you are making. Having realistic expectations, and focussing on becoming a good enough parent, will make parenthood more manageable and sustainable
- You do not have to do it alone – seeking and accepting help – either professional care or support from family and friends – is both vital and brave
- Things can get better! When I think about how much more vibrant, enjoyable, open and rich my life is now compared to when I was pregnant, in the depths of an eating disorder, and feeling utterly devoid of hope, I am so incredibly thankful that I committed to recovery.
*Pettersson CB, Zandian M, Clinton D. Eating disorder symptoms pre- and postpartum. Archives of Women’s Mental Health 2016;19(4):675-80.
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