MIND READING: The Power of Personal Story

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Postpartum Psychosis has, for many years, been shrouded in shame and fear, silencing the women and families who have suffered it. This silence has an impact that reverberates through our community.

Postpartum Psychosis is as common as Downs, yet there has been limited research & public/professional awareness. It has been reported since the time of Hippocrates, and is a leading cause of maternal death, yet in the UK, services are only now beginning to adapt to meet the specific needs of this population. Lack of public awareness causes delays in identification, resulting in more severe, and difficult to treat episodes; increased risk to safety of mother/newborn; and greater harms to friendships and relationships. It impacts on recovery: causing isolation, shame, and reluctance to talk to others; making it hard to meet others with similar experiences; and hard to see examples of recovered, well functioning families. The impacts of this silence and shame, for some families, can last a lifetime.

APP set about changing this by: training and supporting media volunteers to tell their stories in public; supporting Regional Reps to tell their story to inform and deliver training to local health professionals; creating an active peer community to share personal stories, information, normalise the experience and begin to break down stigma; developing accessible co-produced information, making research and personal experience available to all. We helped to form the Maternal Mental Health Alliance to amplify the voice of affected women and families.

On June 19th, we had the chance to celebrate the power of personal story at Birmingham University’s Mind Reading 2018.

Jenny Pagdin, one of the presenters, explains more:

2018_Mind-Reading-conf-3In June, I had the privilege of reading and speaking at the Mind Reading conference with APP’s director Jess Heron, and with Sue McKendrick and Fiona Putnam, who both have lived experience of postpartum psychosis, as I do.

Sue and I read our poems about pregnancy, psychosis, depression, recovery and family life – Fiona read extracts from her personal story and performed an amazing rap on early motherhood and depression.

I wasn’t nervous beforehand because it felt like such an honour to be able to attend and share my experiences. This was my second experience of meeting other PP mums – the first time round I collapsed into tears of relief at meeting other ‘normal’ people with this strange experience. This time, I felt empowered, strong – and most importantly, helpful. We know from the lovely comments that our poetry and discussion entertained and educated the audience – a brilliant feeling.”

Sue McKendrick explained

Some of my poems were written as I tried to come to terms with and make sense of my personal experience of psychosis after the birth of my son in 2000- I never imagined that I would have the opportunity to read these aloud, let alone to such a receptive audience. It was an honour for my story to be shared alongside the very powerful and moving experiences of Jenny and Fiona.

When I became ill there were only two mother & baby hopsital places in Scotland (already taken) and limited relevant information. I am so pleased that APP is raising awareness and providing support to change the landscape for parents facing this traumatic illness.

In the early stages of recovery from postpartum psychosis, I joined a writing group at a psychiatric day centre; this was useful in rebuilding my confidence as initially I had struggled to write a single sentence. As I am a Medical Statistician by background, I had the idea of writing a book called “Method in my Madness” but this seemed a fantasy at the time (though I eventually managed to self publish a book of poems 16 years later). I wrote the following poem for the Mind Reading conference; I was thinking about healing after mental illness – what are the key ingredients for a good recovery?

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A Healing Sonnet by Sue McKendrick

The wound lies deep
but there’s no blood, no stitch,
no scab; it does not weep
or leave a lingering itch.

When trauma festers in the mind,
consuming your thoughts, twisting in knots,
what healing actions or words might we find?
There’s no cream or cloth to wipe away the blot.

This wound can’t be dressed to heal in days,
but slowly reconnects in a jigsaw compilation.
Cool your feet in sweeping waves.
Relax by a crackling fire. Seek your inspiration.

What words, whose words might refocus this daze?
The scent of lavender wafting in the Summer haze.

 

Dr Jess Heron, APP Director, said “It was a really interesting day. Fiona, Jenny and Sue took the audience through a powerful journey from birth to illness and recovery. Through poetry and story, they could engage with the health professional and academic audience on a fundamental level.

We had a chance to discuss the process of ‘writing for recovery’ and the benefits to one’s own recovery and to others. Postpartum Psychosis is a vivid, sensory, bizarre, confused and awful experience, occurring at a seminal time in a woman’s life. The process of capturing it, ordering it, giving it form and boundaries, removing it from a state of never-ending mental rehearsal and rumination can help in a person’s recovery. Once written, it can be shared and used for more positive ends to inspire, educate, generate understanding and acceptance. We have found in APP as well, that reading personal stories can be incredibly helpful to recovering women and families, enabling them to understand that they too will recover, to articulate difficult emotions, and to know that they are not the only person in the world to experience this horrible illness.

For APP, and the MMHA, importantly, personal stories also hold a magnificent power to affect and educate others, from the general public to health professionals, commissioners, and policy makers. Annihilating the stigma and silence around this illness is paramount, so the chance to speak at Mind Reading 2018 to such an interesting and receptive audience was really fantastic.”