Earlier this year, after my own miscarriage, I settled down on the sofa to watch ‘My Baby, Psychosis & Me’ – a BBC documentary on the journey of two women through a Specialist Mother & Baby Unit. Watching it so recently after my own loss was always going to be painful – yet the issue of how women in crisis are supported after the birth is personally relevant. One day I hope to have a child. As someone whose distress is sometimes takes the form of psychosis, I was eager to connect with the stories of women who had trodden this path before me.
Despite my loss, as the program unfolded I was warmed by the obvious love that the two new mothers felt for their children. I saw beautiful possibilities. I saw how women could, in the midst of such distress, fight to connect with their babies. The bucket loads of courage Hannah and Jenny demonstrated as they navigated their way as mothers impressed me. I shed welcome tears, imagining what might be in store for my husband and me if we were lucky enough to have a child of our own. I felt, and continue to feel, so much gratitude for the families who shared such personal and vulnerable parts of their lives with us.
This warmth, and an acute awareness of how much it may have took for these families to put their stories in the public eye, makes my critique of the documentary itself that much more tricky. Since its airing, I’ve struggled to find a way of saying what it is I find so deeply disturbing about this show without invalidating or co-opting the stories of the women featured. It’s a tightrope. Yet, to stay silent now the documentary has received a Mind Media Award feels like a disservice to the very real issues it brings up for me as a woman, a survivor and someone who is trying for a baby.
When we see a documentary we only see the parts of the story that are shown to us by its makers. So much detail is left on the editing room floor, as creative decisions are made in order to have the desired impact. I am under no illusions about this. My critique is not of Hannah or Jenny’s experiences. I do not know, nor would I be disrespectful to presume, what they have been through. My critique is of the way in which these experiences were framed by the production company and the psychiatrist who commented on them.
Narrator: 3 months on the joy of Esther’s birth was overshadowed as Hannah began to have delusions and suicidal thoughts.
Andy (husband): I almost didn’t recognise her. It was almost like looking at a different person.
Danny (dad): She just collapsed into a foetal position and just screamed and screamed and screamed ..
Hannah: I kept thinking I was going to hurt Esther. Not deliberately, but because I was so weak, because I was so anxious … I was worried I was going to forget something.
We are introduced to Hannah in a beautiful moment – singing softly to her daughter in the Mother and Baby Unit. From this, it’s hard to imagine the depths of despair and overwhelm she felt when she was curled up in a ball before admission, but there’s a real sense that she has been through something cataclysmic. Something that she, and her family, struggle to put words to or understand. That aftershock is one that I recognise from my own life. In the eye of the storm, the hospital sometimes felt like an oasis of calm. We looked to the hospital staff, in those days, to provide us with a map or some way of making sense of all this chaos. I can only imagine what it might have been like for a family to experience this so soon after the euphoria of a new birth.
There are so many ways that Hannah’s experiences could be explored in a documentary. For each of us, there is so much complexity to our story and how we came to be in such overwhelming distress. It shocked me how this very human story so quickly became a story of biological illness, losing its context along the way.
Narrator: The team at the unit use a range of treatments, but the cornerstone is medication.
As the nurse showed us Hannah’s medication, including Haloperidol to help with intrusive thoughts, my heart sank. I understand that medication can be useful for people when they’re so overwhelmed – yet the statement that it was the cornerstone of treatment effectively shut down any hope I had that this documentary would explore the meaning of these experience in any depth. In that moment, we were being presented with a clear message that this is an illness like any other.
If Hannah’s distress was simply caused by an illness, then it makes sense that the focus of attention is on getting rid of (or controlling) that illness. It makes sense that we might stop asking questions about her story. We might even forget that we all have some window into how overwhelming motherhood can be (either through our own personal experience of via those who are close to us). We might pathologise or dismiss someone’s fears and concerns as symptoms of this illness, instead of looking in to our own lives and recognising them on a continuum with our own. Sure enough, as the documentary progressed any talk of personal meaning and context became a tiny footnote to their ongoing battle with the ‘illness’.
Narrator: Her 4 weeks in the unit has allowed Dr Gregoire to build a picture of Hannah’s moods and behaviours. There’s been a breakthrough. He’s been able to diagnose Hannah with Bipolar Disorder.
Hannah: After 14 years of knowing I wasn’t right to finally have a diagnosis and treatment is like the best thing you could possibly imagine. It’s so freeing and it makes me feel like I’ve got a future, I’ve really got a future.
At this moment, scripted to induce a sense of relief, I felt only sadness and dread. The narrator’s claim that this diagnosis was a breakthrough, and Hannah’s understandable reaction to the news, threw me back to a time in my life when the diagnoses I was given provided a life raft in the sea of chaos and pain. The diagnosis validated my pain and gave words to the deep sense of badness that I carried around inside me. It made sense. I was broken, but it wasn’t my fault. Better than that, there were experts who could heal me … or at least help me manage it. Along with my friends and family, I eagerly adopted this new shared language of illness – finally giving voice to the many things I had previously kept hidden.
Yet, for me, diagnosis proved to be a Trojan Horse. Accepting the language of illness meant accepting myself as ill, damaged and fundamentally different to those around me. In accepting this illness as real, I accepted that the medication I was prescribed would only supress or control the symptoms that terrified me. The illness, even when it wasn’t active, felt like it lay dormant only to be triggered by too much stress or excitement. I began to fear my own mind. I felt guilt at the thought of my loved ones becoming my ‘carers’. Whilst it felt helpful at first, it was part of an attack on my identity and sense of self that I only registered years after the battle had been won. It took years for me to gain the ground this process stole from me.
Hannah: I’m worried that I won’t be able to control my emotions. I’m worried that I might get over-excited and go into a mania. But I’m becoming more and more aware of my medications and what I need to do with them.
So, when Hannah shared her worries about her first visit home I heard them through the ears of someone who expressed similar fears. I heard her shame when she spoke with the doctor about having reduced the medication after leaving hospital, only to become overwhelmed again. I remember feeling a mix of failure, shame and relief when I walked through the threshold of the ward after stopping the meds yet again and becoming what was described as paranoid. I felt reduced to an errant child, returning home so that the adults could clear up my mess. I was tortured, stuck in a tail spin and no-one really knew how to help me. Is it any wonder that I lost hope?
Dr Gregoire: mental illnesses are suffering. They are at the very root of where suffering lies … which if of course in our heads, in our brains. And that is gruesome to watch in somebody else.
It’s extraordinary that even though Hannah is very very ill, suffering gruesomely. Her ability to squeeze the last bit of determination out of herself in order to give some care to Ester is still there.
Narrator: A few weeks later Hannah’s condition becomes critical.
I hate that I did not feel surprised when we heard that Hannah tried to end her life. That is something I never want to have an inkling about. I’m all for seeing plot twists in movies, but this was real life and I would love to have been wrong. I have no special power to sense such things … there was just something in the situation that resonated deeply with my own sense of guilt, shame and brokenness. I do not know what led Hannah to try to end her life. We’re different people. She talked about the power of her dark thoughts, and her mum talked about how she said that everyone would be better off without her. We heard that she didn’t want to wake up. Whatever happened, it seems clear that somewhere along the way she lost hope.
The way her attempt to kill herself was portrayed disturbed me. Talk of her condition becoming critical is reminiscent of the way one might speak about a severe physical illness or accident where someone’s life hangs in the balance. On the surface this sounds validating, recognising the depths of despair and the actual risk to her life. Yet, the constant comparisons with physical illnesses during this documentary merely served to reinforce a surface-level answer to a complex problem. After watching this, viewers may leave with the impression that it was the severity of Hannah’s illness that led her to this place. This line of thinking can stop us from being curious enough to ask very human questions to try to make sense of a very human situation. I tried to kill myself at several points during my admissions to hospital. My suffering was intense, yet it had a story. This story took some untangling, yet narrating it was a crucial part of my journey. In the documentary, the lack of time given to context to was palpable.
Dr Gregoire: [Most] people want to live even though they’re suffering, they want to keep living. It’s really not until the suffering is unimaginably gruesome and hopeless that they want to die.
This for me is one of the most honest and accurate things that this psychiatrist said during the whole documentary. For a moment, the cloud of illness-speak lifted and a ray of humanity shone through. Yet it seemed that none of the shiny toys he and his colleagues threw at Hannah helped her with the depth and intensity of her suffering.
The medical profession, as portrayed in this documentary at least, was at a loss.
Dr Gregoire: We were increasing her medications, adding new medications, changing medications. We’ve been doing all the psychotherapies and psychological approaches to treatment that we have at our disposal. But, despite all that she had reached a point that this was dangerous.
I knew that the most effective treatment to get her better quickly and, actually if we’re honest about it, save her life was ECT.
In the context of such hopelessness, with these words ECT was held high as a life-saving treatment that would actually work. It was spoken with such confidence and hope, little wonder that Hannah gave consent to try it – despite her mum’s misgivings. It didn’t matter that no-one understood how it worked … people said that it would work! I could really empathise with this decision as I remember asking for Insulin Coma Therapy or ECT when I was at my lowest and most desperate ebb. I was so tortured that the idea of leaving me conscious to wait for other treatments to work felt inhumane. In Hannah’s shoes, I would have given my consent to anything if it came with a promise of success.
Dr Gregoire: Just as with an electric shock that we use for shocking the heart when that’s not working properly. This electric shock is delivered in a very controlled way. The electricity causes a seizure; it’s very like an epileptic seizure. It’s this element of the treatment that seems to be effective in treating the depression. Now there is some hope.
This comparison between ECT and the treatment of cardiac arrest seemed intended to counter images of a barbaric treatment conducted in old school asylums. Instead, it is portrayed as a medical procedure that saves lives. However, viewers may pick on an unfortunate subtext – if an electric shock re-starts the heart, does that mean that Hannah’s brain has similarly failed? Is the extent of her pain merely a symptom of brain malfunction that needs a physical solution – similar to jumpstarting a car? I watch with sadness as the story goes even further away from trying to understand and find meaning in her desperation. I watch as the ECT is applied and we see Hannah’s body fit. I know many people who have been harmed by ECT, as well as a few who swear by it. This isn’t new territory for me, yet it felt extremely uncomfortable to see it being used in the context of its promotion as a safe and effective treatment without any sense of critique or questioning. I felt voyeuristic as I watched Hannah at her most vulnerable – in the midst of a seizure whilst anaesthetized. This was TV on the edge, but an ethically uncomfortable one.
For Hannah, the ECT seemed to be a turning point. She tells us that it gave her some control back. The dark thoughts recede and she we see her try to make sense of what has happened. She talks so beautifully about her feelings about the scar on her arm.
Hannah: The dark periods are so dark that you just don’t get a choice. Every time I wake up I kind of hope that it’s just a nightmare, but that’s my constant physical reminder. I don’t want it to be a reminder of a nightmare, I want to turn it into something beautiful so I’m hoping in time to maybe have a tattoo with a biblical verse (Jerimiah 9.11). It talks about having a purpose and a plan for your life, and that that’ll bring hope.
Her words really hit home with me, as I’ve also had to find ways of making sense of and embracing my history and my scars. I’ve needed to find a way of seeing them that doesn’t cast me as mad, crazy or weak. I’ve needed to find a way of recognizing my strength and my ability to survive.
As kind and caring as we see Dr Gregoire to be, it is his words that underscore my deep worries about this documentary. When considering Hannah’s need to begin to make sense of what has happened he said:
Dr Gregoire: “How could I be like that? And of course, the answer is that it isn’t her. We need to have compassion and understanding and blame these nasty illnesses, not the poor unfortunate people who bravely have to live through them’
As he says those words, I want to shout back – NO!
Do not cast those of us who have suffered as poor unfortunates. That is both intensely patronizing and misses the strength that I saw in Hannah throughout her journey. He says he asks for compassion, but what I hear is tinged with pity. It paints us as weak and incapable victims of an oppressive illness, not human beings trying to make sense of selves and our lives. These experiences, terrible as they can be sometimes, have meaning. They are not random quirks of a misfiring brain, the have a story. They make sense. They are, in my experience at least, drawn from the things we keep inside ourselves. The things we have learnt in our lives. The things we worry about. The things we hope for. They are part of what it is to be human.
Hannah: It feels like I’m actually going to be able to enjoy my daughter going up … It just feels like a fresh start for me.
At the end of the documentary we leave both Hannah and Jenny as they begin the next chapter of their lives with a smile. We are told that this is a success story, featuring state of the art treatment. We are expected, I think, to ask for change. We are expected to embrace this and question why similar services are available to all women – not just a lucky few. This was not my experience. Instead I was left feeling sick.
Yes, I fully support centres that can provide the empathic practical and emotional support that helps keep mothers and babies together during the midst of a crisis. Yes, I feel glad that both Hannah and Jenny left with a sense of hope. But still, if I am to ever have a crisis after having a baby I do not want to be in a unit where the psychiatrist is so narrowly biomedical and views me as an unfortunate victim of an illness. I have spent years untangling the tendrils of shame induced by such thinking that the last thing I’d need at such a vulnerable part of my life is further brainwashing. Instead, I’d simply need sanctuary and support. I’d want psychological therapies, peer support and – probably – some rest. I’d want approaches that foster understanding and hope. I’d maybe want some medication to help give me a break sometimes – some sleep would be welcome, I’m sure. But I’d want everyone supporting me to recognize that my distress is not madness, it has a story that we are yet to fully understand. What I witnessed in the documentary was, aside from the setting, was about as un-progressive as it gets. I refuse to celebrate it.
This worrying few of mental health ‘care’ was brought to us by a production company (Matchlight) that strive for excellence. It was they, not the unit itself that was ultimately responsible for bringing us this narrow and worrying view of treatment for post partum psychosis. Watching the documentary, I have to wonder what kinds of conversations led them to think that this was the best way to present the stories of the women featured. Given that there are so many ways of understanding psychosis and human suffering, why was it that they framed the words of the families concerned in such an unquestioning biomedical way? Why did they adopt the language of illness and comparisons with physical health so completely? What stopped them from featuring conversations with the psychologists, therapists and nurses on the unit. In focusing only on the psychiatrist involved they limited themselves to representing parts of his viewpoint, missing the diversity of perspectives on offer even in that particular setting. In their research phase, did they look at psychosis from multiple angles? Did they hear about other ways of understanding and working with psychosis that exist in mainstream mental health care? Did they hear about any alternatives? If not – then its makers were lazy. A simple Google search would have revealed a wider world to draw from in order to create a more balanced framework for this documentary. If they were aware of the context, then their choices were irresponsible.
Having complained to the BBC, alongside a group of well known mental health practitioners, trainers, activists and consultants, I was not surprised when we were told that the documentary simply followed the stories of the women involved. That is not an answer. I do not have an issue with the stories of the women. I felt privileged to hear them. What I object to is that way these clips were linked together with the voices of the narrator and the psychiatrist. I object to the choices made in production over what aspects to highlight, and what to leave on the editing room floor. We cannot say that this simply follows the stories when the producers are responsible for constructing so much of it.
When I heard that National Mind had honoured the documentary with a Mind Media Award I felt like I was living in an alternative reality. I re-watched it, hoping that the strength and honesty of the women featured would outbalance the concerns I felt at how their experiences were framed. I’m sad to say, it did not. I’d love there to be a re-edit, one that hears more from the women and their families and contextualizes their in a more balanced way. I’d want to take the producer aside and help them understand the nuances of the subject matter so they don’t skew it so much. But, in its current form this documentary is an excellent lesson in how not to do it. It is a missed opportunity to invite a different kind of conversation about the intensities of human suffering after childbirth. Worse than that, it simply reinforces an inaccurate and stigmatizing view of such distress as a severe biological illness that can only be managed with medication and ECT. This is not a documentary to be celebrated above all others – so, why did they choose to?
Again, I would like to thank the women and families for their courage and honesty in sharing this part of their lives with us. I wish the very best for their families as they grow up together. Their sharing was a gift that provided a human face to experiences that are often felt to be shameful and kept hidden in our society. I just wish that the documentary makers had treated their contribution with the respect it deserved. I feel that the women are the ones who should be honoured, not the not documentary as a whole.