Today is the start of Baby Loss Awareness Week 2019. A week to remember babies who were lost in pregnancy, during birth or soon afterwards. I wanted to write something in honour of little Sprout whom we lost in August. Sprout was only on the brink of being – a seven-week-old embryo whose heart had barely started beating before it went still. But they were also a tiny bundle of hope and, as those first three months passed, dreams and plans.
The impact of a hidden grief
Miscarriage is often a hidden grief. Around one in four pregnancies will end in miscarriage. Most of these happen in the first trimester. Many of us choose not to share until after the dating scan. But when things go wrong we suffer in private, without the support of family and friends.
There are thousands of us trying to make sense of these feelings alone when we could be helping each other through. Pregnancy loss is ignored in policy and in the workplace. Women and their partners are not given the right psychological and physical support. The Miscarriage Association and other charities involved in Baby Loss Awareness Week are trying to change this. I recently wrote a report on pregnancy loss, mental health and the NHS and new mental health resources for the Miscarriage Association. I’m currently working on new information for employers and I’m involved in a cross-government working group to improve guidance around workplace policies relating to fertility, miscarriage and baby loss.
I did extensive desk research and conducted a survey of the Miscarriage Associations supporters and stakeholders. In one week we received 1716 responses from people who self-identified as having had mental health problems as a result of their loss or losses.
Report and recommendations
I wrote a detailed report and provided recommendations.
Review of existing guidelines and quality standards showed that mental health support around pregnancy loss is limited and not always followed. Research highlights the association between early pregnancy loss and PTSD symptoms, OCD, depression and anxiety symptoms in particular – although studies are small, difficult to synchronise and limited in scope.
96% of all respondents to the survey reported that they had experienced difficult feelings, emotions or reactions that were caused by or related to their loss or losses in some way. 74% felt alone or isolated, 69% experienced persistent low mood, tearful or unable to find pleasure in things you used to enjoy and 61% felt numb or shut off from other people. 39% of all respondents had existing mental health problems that were made worse by their loss or losses. As well as the statistics we had almost 10,000 individual pieces of qualitative data to read and collate.
I’m writing this to make sense of how I felt yesterday. I’m sharing it because I’m sure I’m not alone. Parenting is really hard and parenting with mental health problems can sometimes be a real struggle.
I became a mum in October 2017. In some ways, it’s made me more resilient. But those dark and anxious thoughts have always found my most vulnerable spot to poke away at – and now that’s my gorgeous, loveable, wakeful, clingy, frustrating, exhausting, friendly, kind, smiley little boy.
Uncertainty, blame, guilt and comparison
When I’m really struggling with my mental health, all those normal parenting concerns are magnified. I lose all perspective. I question everything. I blame myself for his tears and worries. I get frustrated that he rarely wants to get down from my arms and play, when there’s so much I want to explore with him. Then I feel so guilty for wanting him to be even the tiniest bit different. He’ll have enough of that in his lifetime without me doing it too.
I compare myself to others and find myself wanting. I overthink his naps, the amount he breastfeeds, the time he sleeps, the little he eats. I wish I could have his Dad’s strength and calm.
I struggle to find the energy to bounce him through the day. On the very worst days, I hold him with tears in my eyes, unable to see my way through the next ten minutes of parenting tasks, let alone the hours until bedtime. And then I feel pathetic – and guilty that he saw me cry.
My heart feels raw when I think of him. I hurt for the pain he’s bound to feel, for the upsets and the bullies and the difficulties I can’t protect him from. And when my defences are low, I get horrible intrusive images of him falling, or drowning, or burning. Images that send my adrenalin soaring and leave me shaky and tight chested.
Fundamental emotions, twisted and distorted
It doesn’t get to this point too often, thank goodness. Usually, I have more perspective. I’m more resilient, patient and practical. But when I do spiral down, it’s faster and harder than before.
Those fundamental mum emotions of intense love, protectiveness and wanting the best for him get twisted and distorted into guilt, sadness, fear and negativity about myself and my ability to cope. And these emotions are so strong, so deeply fundamental, that their distortions are powerful and destructive too.
Strength and love
The love I feel for Oaklan is incredible. When I’m not with him, I feel as if I’m slightly holding my breath until we are back together (even if I’m also desperate for a break!). These feelings will never fade. I never want them too. Perhaps part of being a parent is accepting that I’ll always be dealing with deeper and stronger emotions than ever before. But I hope that by starting to recognise how they interact with my mental health, I can stop letting the worries and fears take over too easily.
We’re never alone
Almost as soon as I posted on Twitter I got this response from another mum. I knew it wasn’t just me but sometimes it feels very lonely in my head. It’s good to be reminded that we’re not alone.
But this is nothing new. Reports in 2018 said existing guidance leads to misdiagnosis and harmful long-term prescribing. Thousands of people have reported huge difficulties coming off antidepressants. The longer you’ve been on them, the harder it seems to be to come off. Yet many healthcare professionals take a pretty casual approach to these brain altering chemicals.
The WRISK project is a collaboration between the British Pregnancy Advisory Service (bpas) and Heather Trickey at the School of Social Sciences at Cardiff University. They are aiming to draw on women’s experiences to understand and improve the development and communication of risk messages in pregnancy.
They asked me to blog about my experience of taking (and trying to stop) antidepressants before conception, during and after pregnancy. I was happy to oblige. I was given conflicting and simplistic advice from various GPs. They failed to give proper weight to the complexity of my experience and used the concept of risk to make me feel guilty and disempowered. This needs to change and I’m glad to support the WRISK project in trying to do so.
In 2015 I did Veganuary. Controlling my food intake and restricting or cutting out certain foods contributed to a return of disordered eating problems. Food and eating – or not eating – took over my thoughts. Despite moving away from a completely vegan diet, I continued to restrict my food and purge through exercise.
We finally got a positive pregnancy test in January 2017. Pregnancy with residual eating problems wasn’t easy but I’ve found that, since Oaklan was born last October, my relationship with my body has changed. It’s hard to pin down exactly why. I think it’s felt more powerful and more important. It’s helping me do one of the hardest jobs I’ve ever done and perhaps getting through the sleepless nights and challenging days has given me a different kind of confidence. A belief in myself that’s not linked to weight, appearance or my ability to control. And sometimes there’s just been no energy or headspace for anything but survival.
The ‘right’ reason to go vegan?
I’ve also found it harder to justify a non-vegan diet for myself. It feels weird to drink the milk of another species. From a mother whose baby was taken away so I could have that milk instead. That’s a very personal reason of course and is definitely linked to how much I’ve loved breastfeeding.
I have flirted with veganism over the past few months – but I was scared that I was doing it for the wrong reasons. Veganism can be a cover for disordered eating. It’s had that effect on me in the past. Was my motivation purely an ethical one? Or was it an excuse to restrict certain foods and a way of helping me control my calorie intake? Perhaps it’s indulgent to worry about my motivation anyway? Alex didn’t like the idea; he remembered how long it took me to recover last time.
But, since the latest IPCC report, I can’t justify a non-vegan diet for myself any more. I’m scared for my little boy’s future and, although it’s a drop in the ocean, I want to do everything I can to try and reduce my carbon footprint. Although there are environmental issues with any diet, the consensus seems to be that a vegan diet, particularly a thoughtful one, will massively reduce my carbon footprint.
So I’m planning to eat vegan for a month, keep a close eye on my eating and mental health, and see how I go. I’m confident that I’m doing it for the right reasons and I hope I have the mental strength to keep it that way.
Last week Oaklan and I went on an adventure to London for the launch of the latest version of Mind’s flagship booklet ‘Understanding mental health problems’.
I wrote this when I was pregnant and it was great to see it finally published. It’s the first title to be published in the new full colour format – complete with pictures. It looks great and I’m really proud of my involvement.
‘Understanding mental health problems’ is one of the titles that Mind publishes as a booklet. You can find it in local Minds as well as workplaces, charity shops, universities and GP surgeries. You can also read it here. You can see the other titles I have written for Mind here.
Is that a cake or a book? Either way I want to eat it please!
Oaklan enjoyed himself too. He got a free apple in Pret after stealing it from the box and charming the staff, visited our old house in Mile End, had a picnic in Victoria Park, played on the swings and in the sand, met a London baby, slept on a walk through the Olympic Park, mashed strawberries into Mind’s carpet, came with us to the pub for a quick drink, looked out of the window of the DLR at Canary Wharf and threw spaghetti about in my brother’s kitchen.
The awards aim to ‘encourage excellence in the production and dissemination of accessible, well-designed and clinically balanced patient information’. They look for accessible information that is evidence-based and well researched. It’s also important that people with lived experience are involved in the production of the information. You can see all the award winners here.
Information for young people (for the Miscarriage Association)
The youth resources I researched and wrote for the Miscarriage Association were highly commended. They were also given a runner-up award in the special category for Young Adults. I was particularly pleased with this award as I managed the whole project, conducted the on and offline research with young people, developed recommendations and wrote the resources themselves. You can read more about the consultation process here.
It was reviewed by Dr. Hannah R Bridges of HB Health Comms Ltd who wrote:
‘Wow! This is a wonderful example how good consultation and understanding your audience can lead to great quality information! The Miscarriage Association has identified a need for materials to support young people, who have different experiences and support needs. The consultation, planning, and promotional plans show excellence in producing health information. This shows through in the end products – high quality and extremely well-tailored to the audience. The insight and thought that has gone into this is commendable. Take for example the ‘what happens when you call our helpline’ page – simple, highly visual, concise and reassuring information to encourage young people in need of support to dare to pick up the phone – the overall impression is one of kindness. Just wonderful.’
Money and mental health (for Mind)
The information product Money and mental health I wrote for Mind was highly commended. It also received a runner-up award in the special category for Self-Care resources. This resource was one of the first to be written in a new ‘hub’ format. It involved research with Mind’s online community and social media audiences, working with bloggers with lived experience and researching common problems and support options.
Unfortunately, I couldn’t attend the awards with colleagues from either charity – at 39 weeks pregnant it wasn’t worth the risk of going into labour on the train from Bristol, at the awards or in my brother’s shared house. But it’s a lovely way to leave work for a while.
Last year, James Withney of The Recovery Letters emailed to see if I would be interested in contributing a letter to the published anthology. The Recovery Letters are addressed to people experiencing depression. They share experiences and give friendship and hope for recovery.