On 9th December 2016 I am speaking at the House of Commons about maternal mental illness. My colleague, the obstetrician Dr Raja Gangopadhyay, has organised the event. Maternal mental illness is often perceived as temporary, impacting on mothers directly after giving birth, referred to as baby blues or postnatal depression. Postpartum psychosis is rare, involving delusions, racing thoughts and sleeplessness, but again occurs during the days, weeks after giving birth. There is also prenatal depression that can impact profoundly on the unborn foetus. I suffered, to varying degrees, from all of the above, what I didn't realise was that in my own case the maternal mental illness would be long-term.
What is long-term maternal mental illness? Although I have overcome the worst and most acute phases of being unwell, I would still argue I am not fully recovered. Of course my maternal mental health problems are intensified by my mental health condition, schizoaffective disorder. And I am without any mental health support, since I have given up on getting the care I require.
Recently I attended a charity dinner at the J.W.Marriot hotel in Kuala Lumpur, hosted by the Malaysian Mental Health Association, to raise funds for a new building for mental health sufferers. Dr Ang, my colleague, who works for MMHA is very supportive of my work, and she is an advocate of patients taking their medication. When I have visited the centre I have observed how some patients just sit and stare into space, or sway, or barely speak. Going to the MMHA is a lifeline for them. I am not in that category where I cannot function or speak, but there are times, especially during the depressive phases that I do feel debilitated, unable to sleep, or eat or do anything much. It is commonplace for those that are morbidly depressed to find doing the most simple of tasks requires gargantuan effort. Coupled with the stresses and demands of raising small children it can be tough.
At the dinner I was seated at a table with several psychiatrists, when I tried to engage with them and showed them my book, Schizophrenics Can Be Good Mothers Too, in which I recount my experience of psychosis and postpartum psychosis, I was met with mild indifference. Some were laconic, disinterested and exuded a supercilious air. Inside I thought people's mental health lies in their hands and they can't even engage at a basic human level. But seeing the patients on stage, singing, dancing, speaking openly about their mental health was encouraging. MMHA raised funds on the night and I hope raised awareness, too.
This is precisely what I am trying to do, since I am sufferer, I know other mothers with mental health problems are suffering. I told another mother about my condition, she listened silently and didn't say much, of course I wondered if she understood. You see, if you are not a sufferer then it is hard to understand why people, for example, hear a persistent voice in their head saying, 'Die, die, die, just kill yourself.' This is what my brain has been doing for days, I ignore it, but it's heavy to hear such a bleak record playing on repeat in my head. It's like being mentally stabbed over and over as you try to carry on with your life while leaving a trail of invisible blood in your wake.
Detail from sketchbook when I was suffering from postpartum psychosis (pen and ink on paper, 2014)
Recently I travelled from Asia back to Europe. I dread flying, especially with the children. Well who does? But airports are trigger zones: the noise, the people, the walking, the waiting, it can be too much. The last few times I have travelled I have utilised the wheel chair access. This was on the recommendation of my sister who has a disability. Her disability is physical and visible. Anyone looking at me would think I am able bodied, but I am not entirely. The airline I was travelling with, arranged the assistance, they put in the system that I was, 'not able to walk long distances'. This is not true and actually said I had a bad flu and felt weak. I didn't tell them that mentally I was unwell either - not daring to because it would have been logged into the system. They lady who assisted me was very kind and I tentatively opened up to her about my condition. She said candidly, 'You were wise not to tell them the real reason why you need assistance.'
This is a real shame, because indirectly I am being made to feel ashamed for a mental health problem that flares up, subsides, rages in my head, for something that is no fault of my own. Those reading this might say, 'Take medication.' But that is my choice. To try to manage my mental health and live a normal life, but seek some assistance when I need it, is that so difficult, or too much to ask?
And for long-term sufferers it is these small acts of kindness and gestures of help that can keep us well and mitigate chances of a relapse. Sleep deprivation is a big trigger, it remains my biggest problem so travelling can leave me vulnerable if I don't manage to sleep, however I do try to be mindful of trying to rest when I can, even if sleep doesn't come.
Mothers carrying the burden of the negative thoughts and sometimes gruesome visions need to be able to talk to others about how they are feeling. Keeping it all in will only compound the negativity that persists in their heads.
Detail from sketchbook completed when I was suffering from postpartum psychosis (pen and ink on paper 2011)
When I speak on 9th December at the House of Commons, I want maternal mental health to stay at the top of the political agenda, it has to. The world is changing, it's becoming more hostile in many respects, a harder place in which to thrive and flourish. Vulnerable mothers need protecting, to get better and stay well, for the sake of their children. Support our mentally ill mothers, not just in the short-term but in the long-term too.