Postnatal mental health
‘Postnatal mental health’ is in inverted commas because this term is too broad, what I was dealing with was trauma in the context of having just given birth and as a result of a postnatal illness – Postpartum Thyroiditis. It also became postnatal depression and postnatal anxiety, but not in the way it was understood – or in the way the medical profession assumed it should be. I was, apparently (I’ve always known it) ‘very unique!‘ What made things more complicated was that my initial presentation of ‘mental health’ related symptoms were down to an overactive thyroid- the first and most terrifying (for me) phase of Postpartum Thyroiditis.
This post is too long, I know it is. I faced so many barriers to appropriate care that I want to share but I also want to stop writing about it – so here it is in one big hefty spew.
Our new arrival
I had an unremarkable pregnancy and birth (as if such a thing exists.) A twenty-three hour labour, with no pain relief and I made plenty of remarks!
Squeezing a tiny human out of your body is pretty life-changing but given this context me and my mental health felt alright – in fact we felt obnoxiously good. At about two months postpartum I embarrassedly answered the question that seemed to be on everyone’s lips: ‘how much sleep is she getting?’ with ‘she sleeps through.’ Things clicked into rhythmic normality and I tentatively said to my Mum ‘it can’t be this easy can it?’ No, no it can’t…
Postpartum Thyroiditis misdiagnosis
Three months after I gave birth and within the space of a week, this normality, this happiness was gone. I very suddenly became ill and was almost immediately misdiagnosed with postnatal depression and anxiety.
After this and due to my presentation, without any physical investigations taking place I was prescribed anti-psychotic medication. Before I could commence this treatment bloodwork was ordered and this is when I found out that I had an overactive thyroid, later (too much later) I was diagnosed with Postpartum Thyroiditis.
My postnatal journey
Over the following two and a half years I became extremely unwell and my mental health was impacted in a complexity of different ways, all intertwined together in one ball of fear which bounced relentlessly inside my head. My body and brain broke, each weakened by a plethora of different circumstances, they fed one another and took charge of my postnatal journey.
When I initially presented with an overactive thyroid I went from extremely well to absurdly unwell in the space of a week. At this point, I knew it wasn’t my mental health. The nature of my illness was so explosively physical.
I had an overactive thyroid for six weeks in total and for all of this time, I didn’t have an explanation for what was happening. For me, the feeling of an overactive thyroid was excruciating, slow torture that I wanted to escape. I can’t describe it and though I try, nothing I write or say seems to reflect the reality of what I felt.
It was as if my mind and body were going to explode, I was convinced it was the end of my life. My brain ticked over at 100 miles an hour, the experience was as if I was constantly watching my own thoughts and distractions were impossible. Even the escape of sleep was not an option as my body wouldn’t allow it, I spent days and nights awake. No respite. I felt driven to hurt myself, to thrust my head through a window, to distract – to explode out of myself. I experienced this intensity without any knowledge of what was suddenly going on. At the time, my reality was that I was going to die – this is what I believed.
At this point and after a telephone assessment, I was referred to low-intensity CBT and at the first (and only) session was asked to describe my physical symptoms. I said ‘my eyes are bulging out of my head’ (a symptom of thyroid-related illness) the response was ‘that’s not a physical symptom, do you mind if I write that down in thoughts?’ And so the journey of ignorance began, where mental and physical health are put into two neat little boxes and only opened one at a time.
Over the following two years, there is no doubt that my thyroid – a gland that regulates every aspect of your body, impacted my presentation of mental health-related symptoms. After the initial period of an overactive thyroid, my thyroid became underactive and feelings of depression and isolation came with it. However, it had become more complicated than it needed to be and these complications impacted my mental health.
The thyroid gland produces hormones that regulate the body’s metabolic rate as well as heart and digestive function, muscle control, brain development, mood and bone maintenance.
In the context of giving birth
Three months before experiencing these feelings I had given birth, played a part in creating life, pushed a new human into the world! Naturally, this was a period of adjustment and reflection – life had changed forever. Giving birth, combined with the fear of dying was evidently too much for my brain to take. I never felt like the birth bit was taken into account other than to provide a label.
My brain responded to these experiences in a way that has shocked and scared me – in a way that I didn’t know was possible.
‘The feeling of deep distress, the feeling of being trapped, the loss of control, the collapse of basic beliefs, the feeling that one’s life is in jeopardy, that the physical integrity is (really or in one’s imagination) threatened, the feeling of helplessness.’
The day my brain broke
I can pinpoint the day my brain broke it was Thursday 21st December 2017. A thought popped into my head as I changed my little girls nappy. ‘I’m going to die, one day I am going to die,’ I put it away but there it was again an hour later, and then again half an hour later, then every minute and every second. When I came across people I could only view them in terms of death and how close they were to it. I found it difficult being around those I loved that were older than me because I saw their time march away.
I didn’t just think about death, I felt it. It felt so imminent like my time would soon disappear. These thoughts persisted, constantly, every day. When I woke, for a few seconds, nothing…and then I would remember ‘I was going to die.’
Over time I became so preoccupied with death that I wasn’t able to live. I knew it was wasted energy that I should put the thoughts away but I couldn’t – they were in charge and I became powerless to their chatter.
As the thoughts amplified so did the feeling of permanence. My brain convinced me that these thoughts (and feelings) would plague me for the rest of my life, until the day I died. I had times where I could not see past this, times where I lost hope that things would change and times where I wanted to end it. I saw my friends less often. Sometimes, when I did I was smiling, even laughing but on the inside, I was consumed by death.
‘I remember belly laughing with friends in the peak district and in between each smile the thought; ‘this will be gone one day – you will be dead, it will be done soon, all of it,’ stabbed constantly.
My brain’s response to these events scared me equally as much as the overactive thyroid had. They left me breathless and stunned, feeling isolated and like nobody in the world could ever understand.
After the initial overactive phase, where I was dismissed and unheard I faced a further two years of feeling extremely unwell and without support. This context mattered – it fed my fear, the fear of dying alone whilst screaming that there is ‘something seriously wrong.’ This situation, my interactions, the lack of support and the absence of an ‘expert,’ rooted my broken brain.
‘Everynow and again, I go back there, a sleepless night, my hair coming out in the shower, frozen cold fingers – just a small and simple reminder and I am in the midst of the overactive feeling and the panic of being medically alone.’
At one point (and for those who have read my other posts, after research of course) I specifically asked for some high intensity and what I felt was more appropriate mental health support but this was declined. I was instead referred from one mental health service to another, which specifically supported people with long term illness. This service promptly declined the referral and I was instructed to visit my GP to begin the loop again. Not only was I not receiving appropriate care but the process was detrimental to my mental health – it fed the problem.
My responsibility to ‘fix myself’
The thoughts and fears about dying continued, they became my life and ironically, at points, I thought about death as an escape from the mental torture.
After my first experience with CBT, I saw another therapist who explained kindly that ‘we are all going to die,’ this I had already known, but I had never felt it, every second of the day. We looked at my childhood script and this was the first time I felt that it was my responsibility to fix myself. Unraveling a childhood felt like too much, what if I couldn’t do it?
For nearly 18 months I carried the pressure and responsibility of having to fix myself until I met a fantastic (self-funded, self-found) therapist who simply said ‘this is your brain’s response to a traumatic situation after you have just had a baby! – it will take time to heal.’ The weight was lifted, my brain was broken in the way a leg would break and needed time to heal. This made sense to me.
For nearly two years of this journey, I was diagnosed with ‘low mood,’ and referred to low-intensity CBT. The enormity of the situation was never really acknowledged and this fed an already consuming amount of guilt, guilt that others were far worse off than me. It was ‘just a thyroid problem’ and I was ‘overreacting.’ People brought their assumptions and ignorance to the table, they understood me in terms of how they thought I should respond to Postpartum Thyroiditis, based on very little knowledge of the illness. By society’s standards, ‘my response’ wasn’t justified. Only this wasn’t MY response, I didn’t choose to express myself in this way, my brain had broken and I was powerless to do anything about it – it happened to me.
This I found easier to deal with, I knew where it came from and it made more sense to me. I could unpick it, recognise it’s triggers and to an extent learn how to manage it.
Every time I engaged with healthcare services on this messy journey any investigation into physical health was dismissed and I was diagnosed with postnatal anxiety, depression and at one point psychosis. I was placed very quickly into the box of ‘new mum’ and at every opportunity, my mental health, before this was even a problem, was discussed. I was not listened to, I was not understood and I was passed from pillar to post. Over time I became (and still am) anxious about being unwell and alone. At a time of extreme distress, when my thyroid was overactive and I felt like I was going to explode, I was unheard. This became a self-fulfilling prophecy, the more my thyroid health was dismissed as mental health problems, the more my mental health suffered, the less my thyroid health was examined…and so the cycle continued.
This created such a huge barrier to care, I felt unable to discuss my mental health challenges through fear of what I also knew was a thyroid problem being ignored.
I had to start from the beginning so many times, five endocrinologists asked me the same questions and only ever understood a snapshot in time, not the whole significant journey. Medical appointments became a source of understandable anxiety and when this anxiety presented itself it was used as ‘evidence’ to shut down any investigations into thyroid health. It was constantly being fed.
I faced anxiety in relation to sleep, when I couldn’t sleep I feared my thyroid was overactive again. Some nights, before the pressure of work especially, I was taken straight back to the experience of having an overactive thyroid. I learned how to manage this to a degree, much of my support came from a meditation network that I was so lucky to find.
My postnatal journey left me feeling alone, isolated and I inevitably became depressed. My social circle had become limited and I struggled to connect with my former self. For this entire journey, my thyroid health was not well – either overactive, underactive or recovering from the impact, which I am certain will have amplified the intensity of the emotions I felt.
At twelve months postpartum I was not well enough to return to full-time work and unfortunately, I did not have the appropriate support so I took the decision to prioritise my health and resign. This was stressful, we worried about money, I lost my confidence and missed this part of my life. This absolutely impacted not only mine but my family’s mental health. I felt like a burden.
Time lost and future plans
I was and forever (to some degree) will be sad about the time I lost with my daughter. When I see smiling pictures I am filled with memories of the difficulties that lie behind the facade. The ‘minutiae’ sometimes hits me, when I see a woman feeding her child I remember having to stop breastfeeding my little girl in a week, with no support, panicked and alone. Ripped from my breast so functionally – yet I never really had the time to compute this.
I am slowly accepting that having a baby is more than likely something we won’t do again with a 70% chance of recurrence, less financial stability and no reassurance of support – it just doesn’t feel doable. I am ever so grateful for our beautiful family but I do find this difficult.
‘My postnatal mental health journey was multi-faceted but has always, to me and those that know me been understandable and in a way obvious.’
Mental vs physical health
Throughout this journey, conversations took place within the context of mental or physical health and never the twain shall meet.
I KNOW the initial presentation of symptoms was my thyroid. FULL STOP. The way I went from so very well to so very unwell, the way I experienced the symptoms inside my own mind and body. As a consequence, my brain broke and I required support with my mental health. Over time I began to learn the way in which my thyroid health impacted my mental health-related symptoms. I could almost pull them apart but they remained intertwined, feeding one another.
The first endocrinologist I saw, who knew my thyroid was overactive said to me ‘your psychiatric symptoms are for the psychiatrist to deal with,’ whilst also issuing me with a handout that detailed ‘inappropriate anxiety’ as a symptom of an overactive thyroid.
The isolation in which mental and physical health are treated is such a giant barrier to care.
A detrimental campaign
I have always been proactive with my mental health and even though I felt weak and vulnerable I continued to be so. I looked for the right therapist, meditated, practiced mindfulness, saw a nutritionist and clutched at every straw I could. I talked to and told people, I asked for help and I searched for help but often found none. The campaign to talk became a source of anger and isolation for me, it made things worse. I felt like I was screaming from the top of my lungs but there was no one there.
As part of this campaign, I noticed a sometimes overwhelming pressure to be grateful, I suppose if we’re all grateful we never raise concerns. I felt spoilt for feeling the way I did. I felt like I was unreasonable for being angry with the NHS. I had a beautiful family and for that, I was grateful, for my journey I was not and this was ok. I have tried, in many ways to create positive outcomes but if I had the Postpartum Thyroiditis receipt and I could take it back I would. Of course, I would.
The world was campaigning whilst I fell down the cracks.
Forget postnatal mental health lets focus on postnatal health
I spent months trying to pull it apart, trying to understand what was what in the hope that I could try and help myself. I decided, in the end, it didn’t matter – after all the body and the brain are one, they cannot be pulled apart. I required support with both my thyroid and mental health as they were all working (or not) together. I became unable to speak honestly about how I experienced my symptoms and this meant I didn’t receive the appropriate care for both my mental and physical health. People all assumed they knew. they did not.
This is why I think it’s important to stop talking about postnatal mental health and start talking about postnatal health. Because my physical health was ignored my mental health suffered. Another campaign that, I fear inhibits women’s care post-birth. Why is it one at the expense of another? As my story shows, people aren’t so straightforward.
All postnatal journeys are unique
I was so often told how unique I was from both a physical and mental health perspective. Everyone is unique, all births are unique and all postnatal journeys our unique. We don’t fit neatly into boxes and this is what I fear people spent two years trying to do. They never got the lid on.
We’ve all got so good at talking about postnatal mental health but let’s campaign for this – for each woman being taken seriously, listened to and treated like an individual. This campaign would encompass all others, better healthcare for women full-stop.
Why is it only during nine months of pregnancy are we afforded an individual approach to healthcare? The mantra ‘no one birth is ever the same,’ surely and quite simply can be applied to the postnatal period and beyond?
Postnatal mental health is complex and detailed (as this post hopefully highlights) and saying ‘but you’re unique’ is a poor excuse. 10-20% of women develop postpartum thyroiditis and these are the women that are diagnosed. This is what postnatal mental health looks like. We need to know more, help more, respond more.
The here and now
My daughter is two and a half, I am well and I am happy and thankfully the trauma has passed (though it does still visit every now and again). My health cost me a lot; my job, finances, relationships, and friendships. Of course, this has impacted my mental health, these things are difficult but I can work on them and do. Having said this, no amount of ‘leaves on a stream,’ was going to fix my broken death riddled brain, what I really needed was time and patience and I needed a professional to tell me that.