Maternal Mental Health Awareness Week.

MMHAW runs from 2nd-8th May 2022. It’s purpose is to raise awareness for mental illness and mood and anxiety disorders that occur during the perinatal space. The perinatal space is considered to be from pregnancy right up until your child is a year old, but in my personal experience this fluctuates for everyone. Last year during MMHAW, I was pregnant, and in a very dark place. I opted not to get involved in much awareness raising, though it was a decision that I found difficult, because spreading awareness of topics such as this, is so important to me. However, whilst these weeks/days/months are so important, they don’t come without triggers. So I want to let you know, if you’re in the perinatal space, just out of it, or five years postpartum, if spending too much time online is proving triggering for you right now, please take a break. Not feeling able to spread awareness is ok. Joining in for one day is ok. Wanting to get involved in the whole shebang is ok. Having good intentions and then changing your mind? Also ok.

Last year just before MMHAW and Maternal Mental Health Awareness Week Blog

Maternal mental health/illness is complex and the effects are different for everyone. We’re often warned of postnatal depression but maternal mental health is so much bigger than depression alone and definitely doesn’t just occur postnatally. I’ve had two babies and suffered with my mental health with both, throughout pregnancy and during the perinatal space. But the effects of each illness were very different. For example with my daughter I suffered low mood (depression) as more of a prominent symptom. I would want to be away from her a lot and I struggled with bonding and finding my identity as a mother. With my son, anxiety and intrusive thoughts were the overriding emotional responses to pregnancy and for a long time postpartum. I couldn’t be alone with the children for weeks after his birth, I felt as if something bad was going to happen whilst they were in my care. I had many intrusive thoughts and my main fear was of developing psychosis. Funny really, because the fear of this very nearly tipped me onto the scale of being psychotic.

Have you ever considered the language used in relation to maternal mental illness?

The reason I ask this, is because I have realised as a sufferer and survivor that we are still relatively behind in how we refer to maternal mental illness. Many people still only resonate with the term postnatal depression except we know that postnatal is just one period within the perinatal space. We know that depression is just one of the many perinatal mental illnesses that affect women during this time period.

Other types of maternal mental illness include

  • Maternal Anxiety
  • Maternal OCD
  • Peri and postpartum psychosis
  • Maternal suicide
  • Exacerbation of existing mental health conditions such as bipolar disorder and obsessive compulsive disorder
  • Development of menstrual disorders postnatally

Organisations such as PANDAS often now refer to mental illness that occurs during the perinatal space PMADS which stands for Perinatal Mood and Anxiety Disorders. Others refer to postnatal depression as PND or PPD and some like myself who suffered both depression and anxiety refer to it as PNDA. Perinatal depression and Anxiety. The terminology might not seem overly important, but what is important is the level of understanding and knowledge, that maternal mental illness is not just one symptom, it can often include all of the above at the same time.

I’ve just finished ten months of medical and therapeutic intervention since giving birth to my son in July 2021. I am also medicated for both anxiety and PMDD. Having my children crippled me physically, it shattered my mental health and any equilibrium in my life disappeared. I love my kids, that’s not in question. Though I found growing, birthing, and caring for both of them during the perinatal period, traumatic in the extreme.

What really saddens me when I look back now is that I cried out for help, particularly in my second pregnancy. From just seven weeks pregnant I asked for mental health support. I was told I wasn’t anxious or depressed enough at that time. There was no preventative intervention, nobody to guide me. Particularly as I carried my son during the height of the 2020 pandemic. By the time I was admitted to hospital on the verge of psychosis, the damage had been done. Not only did I need to recover from the trauma of a debilitating pregnancy, I had to do so whilst mentally very unwell and with two children to look after. I still believe that if I had been referred to the perinatal mental health service earlier in my pregnancy my experience would have been very different. You can read more about my experience during my second pregnancy here. Pregnant and chronically ill.

I haven’t shared Kaiser’s birth story, because still to this day, ten months on, after much therapy and support, I find it a harrowing and destabilising time to reflect on. I can talk about it in conversations but I struggle when recalling the details and writing it all down. It causes me pain. And whilst I’ve worked through a whole heap of trauma and accepted my illness, delving into and sharing the true extent of my thoughts is not something I’m completely comfortable with yet.

What I am willing to do is share a quote from the day he was born. A quote that I wrote in the notes on my phone during our first night with Kaiser.

I feel scared of my baby, scared of what the responsibility of being his mum means. I’m missing my other baby, I can’t cope with this one too. Am I a bad mum? I don’t want to be here, in this room with the yellow light and the sound of feet moving and trollies rolling outside of its door. I don’t want to go home either. I just don’t want to be HERE at all.

12.10am 02.07.21

There is a lot of work being done by charitable organisations such as PANDAS as well as The Perinatal Mental Health Partnership to find out what’s causing huge hold ups for people waiting for mental health care during the perinatal period. NHS England are also working on extending the time you can be supported when suffering perinatal mental illness. It’s currently until your child is a year old, however many women find symptoms of mental illness might occur later in the perinatal period and need further or ongoing support.

If you are struggling with your mental health at all please reach out to your GP or one of the organisations listed below. You’re not alone. If you feel like you’re not getting anywhere with your GP ask to see someone else. If you or someone you know is suicidal please visit your nearest A&E department or call your maternity unit immediately. Mental health care is for women during the perinatal period is as essential as physical healthcare.

PMDD Lightbulb Moments

This month is premenstrual disorder awareness month and I have teamed up with The International Association Of Premenstrual Disorders as a PMD Awareness Champion. Over the course of the month I’ll be sharing my personal experience of living with PMDD, as well as catching up with other PMDD warriors. This year’s theme is Connect The Dots and I talked to several women I’ve connected with via Instagram to find out how they connected the dots, between their hormones and their mental health.

I asked these brave women three questions which were: 

1. When was your ‘light bulb’ moment?
2. How did you connect the dots?
3. Do you feel as though you’ve found a manageable treatment and if so, would you mind sharing what that is?

I’ve included my own answers below too.

Me, Steph:

I can’t tell you exactly when I knew it was PMDD because hormonal changes have affected me my whole life.

If I look back now I can see how the most traumatic experiences in my life were either in relation to my menstrual cycle or my reaction to such experiences was exacerbated by my hormones and their fluctuating.

For me, I was quite aware of the fact that hormones played a big role in my life and on both my physical health and mood, from a young age. In childhood I had a hormone condition called Premature Adrenarche. PA is diagnosed when your adrenal glands over produce sex hormones. Adrenarche can happen in both male and females, but obviously for females and AFAB individuals, puberty means periods. A lot of my dot connecting came down to PMD’s running in my family, thus having knowledge of them from other sufferers. Since menarche my moods have been severe during luteal, so bad that I was diagnosed with clinical depression at 13 years old and prescribed antidepressants. I also attempted suicide. It wasn’t until some almost ten years later, and I got my first iPhone, that I started cycle tracking using an app. Along with my mum’s knowledge of my symptoms and their severity, we pieced it all together and it became apparent that my symptoms were very obviously cyclical.

Over the years I have had many successes followed by, ultimate failures with treatment. Many treatment options have worked for a limited amount of time, until 𝐏𝐌𝐃𝐃 comes back with a vengeance. For example I’ve tried countless antidepressants and birth control and they have all helped for a period, until they don’t anymore. I can also say it’s definitely worsened in severity and duration since having children. Symptoms have also increased, such as allergies. I’m now allergic to the hair dye I’ve been using for a decade and silver. Migraine is relentless and an attack lasts for days. Treatment wise, I have biweekly B12 injections, try to manage my sugar intake, take SSRI’s month round and use progesterone only contraception – The latter has limited success in the treatment of PMDD, but combined with other methods works ok for me at the moment. What I have found really useful is, since the birth of my son 9 months ago, I have been having intense Dialectal Behavioural Therapy. DBT involves learning distress tolerance skills, and how to dial down the intensity of emotions. Skills include using holistic treatments too such as cold therapy. I really feel DBT has been invaluable in treating symptoms of PMDD particularly.

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Lori:

After giving birth I began mapping how I was feeling along side some cbt for PTSD due to a traumatic birth experience and I started to realise every cycle I was physically and emotionally not well

Research, research, research

CBD oils have been amazing, I live with chronic pain which worsens around my cycle and impacts sleep so these help me get into a deeper sleep, SSRI’s all month too. And lastly, the fitbit app tracking my cycle to rationalise why I’m feeling the way I’m feeling (I can pretty much tell exactly when I’m about to ovulate or bleed based on my emotional state)

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Amy:

For me, it was when I stumbled across the PMDD Information page on the Mind website.

After years of various tests and being told by the doctor that I’m ‘fine’ this was huge. I ticked every single box for PMDD symptoms and I just knew that this was what I was going through each month.

I went back to the doctor armed with this new knowledge plus a symptom diary that i’d been keeping for the previous 6 months and they agreed that the diagnosis was PMDD.

Yes. But it’s just sticking to it that’s the problem! My go to treatments are regular B12 injections, keeping on top of my SSRI intake, Ice hats, pain medication, plus loads of water and trying to cut down on sugar and fatty foods (even though this can seem like the most impossible task in the universe, during hell week!)

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Jaimie:

My lightbulb moment came when the doctors kept telling me I was ‘just’ depressed and giving me SSRI’s and the pill and wouldn’t listen that I only felt this way some of the time rather than fully. Hormonal contraceptives do not agree with me and I knew there was more to it than that but trusted them that they know what they’re doing.

It took a long time but I noticed that I felt immediately relieved and lighter as soon as my period started so good old google came to the rescue and I started reading about PMDD

I felt like for the first time what I had been going through was valid and real when no one seemed to believe me or understand.

I just don’t know how bad each cycle is going to be, however I did find an SSRI useful for a while, they’re not for everyone and I no longer take them. I’ve found that taking things easier/slowing down and planning things for the parts of my cycle where I know I’ll be more positive and less likely to cancel helps because I don’t then feel like I’m letting people down or being unreliable which is a big thing for me – getting outside whenever you can works wonders too even if you don’t feel like it or it’s raining being in nature does more good than people realise

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Maisie:

My light bulb moment was when I was with my ex partner and he called me a psychopath. I was so upset and angry that I punched a hole in the wall. I scared myself with how angry I got. I was so angry that he called me that, but it made me think about what I had done to warrant that, and I thought “shit, I’m not a psychopath, but I’m not myself either, somewhere in between maybe”. It was going round and round in my head, and for a few days every month leading up to my period, I was so deeply upset, I didn’t want to be here, and it was like a cycle that I couldn’t get out of. Why am I like this? This isn’t me. But in the moment, I couldn’t see it.

It wasn’t until I was out the other side of those few days that I could reflect on my behaviour and feelings and realise properly that it ISNT me! I spoke to my GP, who put it down to “bad periods”.

I told them this wasn’t just bad periods, bad periods don’t make you suicidal, aggressive, or run away. Bad periods are tummy cramps and a heavy flow.

I pushed for more help, tests, anything. I was advised to have therapy for my dark thoughts, and they prescribed me SSRI’s. After I gave birth, they changed me to ca different SRRI. But the main help for me is telling my close people “it’s coming” or “it’s happening”. I find myself apologising in advance. “I’m not going to be myself for the next few days and I’m sorry”. Which makes me even more frustrated. No one that I have met so far, has ever heard of PMDD. Except a few queens on Insta! I try to explain it to people by saying “it’s like the volume is turned up full blast on everything. My emotions, the hurt, the anger.” You could say something to me on a normal day and I’d brush it off. But say the same thing to me on those few days and my world comes crashing down. The best treatment I’ve found more than telling people, or medication, or therapy, is reminding myself that it’s all in my head. Sometimes that can be hard, and it doesn’t take the thoughts or sadness or anger away, but it makes them more bearable, knowing that I am ill, not crazy. My ex partner didn’t help, but now he’s gone it’s so much clearer to see. I’m poorly. I have been diagnosed with PMDD, it’s not just in my head but at the same time that’s all it is. Finding others who are going through the same thing and trying to raise awareness for PMDD to others as well as medical professionals helps too. I felt like I was going mad, because I was told I was, and felt like I was. But it was all in my head and that’s where it stays. Like you say (sic) Cunty Carol just comes to visit a few days a week, and where I used to be terrified of her unpredictability, now I can at least say “fuck off Carol, I know why you’re here and I’m okay with it, close the door on your way out”

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Intrusive thoughts during the perinatal period

Some people when they hear the words intrusive thoughts automatically assume that the person experiencing said thoughts is hearing voices. Some people think OCD and others believe intrusive thoughts to be a sign that a person is bad and will act on their thoughts.

With the exception of possible OCD, none of the above tend to be true.

So what are intrusive thoughts?

Intrusive thoughts are unwanted and or distressing thoughts that are often reoccurring. They are likely to leave the thinker very upset, distressed, disgusted, confused and ashamed.

It is thought that 1 in 5 women and mothers will suffer perinatal mood and anxiety disorders, and 57% of those will have experienced intrusive thoughts. Mental health professionals are not entirely sure why more women in the perinatal period experience intrusive thoughts, but it’s believed to be related to a variety of hormonal, environmental, and emotional factors. That said it’s a common symptom of PMADS. Typically, the thoughts that occur in the PP (perinatal period) are fears that surround our children, ‘What if I harm the baby?’ But the thoughts don’t always stop at physical harm and can relate to sexual fears too.

To be clear before you read on, suffering from intrusive thoughts is NOT a reflection on a person’s character, desires or beliefs. The thoughts themselves go against all of our beliefs and natural instincts as mothers and do not align with our values hence the very word for them being ‘intrusive.’ We don’t want these thoughts, we can’t bear them and it’s the very reason we are left feeling as though they are ruining our life.

During pregnancy with my second child I became overwhelmed with intrusive thoughts, some of them too weird and harrowing for me to share —though in some ways I wish I felt I could share them all, then maybe they wouldn’t consume my brain— It got so bad that at just shy of 38 weeks I was hospitalised and my labour was induced, whilst I was medicated for my mental health.

After my son was born and I was again assessed by a psychiatrist, she told me thoughts that are harmful or as mentioned sexual in nature are the most common type of intrusive thoughts during the perinatal period. I asked her why this was, and she gave me a fantastic analogy.

You have this tiny human to care for. It’s your most important job, above any other. The thoughts that you are having are in direct conflict with your own anxieties about what could happen to your child. The thoughts are the very things you want less than anything in the world to happen.

But how do you know I’m not just a psychopath? I asked.

‘Because psychopaths don’t phone me up hysterical about upsetting thoughts, Steph. That’s how I know you pose absolutely no risk to your children.’

At this stage I felt so out of my mind I didn’t know if I posed a risk to my children. I felt like I couldn’t think straight. But Dr Pysch was adamant about this, and though it didn’t ease the thoughts initially it helped me to understand I wasn’t alone and other women and new mothers went through this too. She then went on to say (I feel like this is a big one…) the only person you pose a risk to, is yourself with your judgement about the thoughts.

I found that particular line about judgement really interesting because I realised quite quickly that it WAS the judgement that was keeping me in a cycle of constant fight or flight.

I was overthinking every single thought and if I dared speak out about my thoughts, rather than feel better all I did was worry about other people’s judgement instead. That was until I met the most wonderful community psychiatric nurse. For the purpose of this blog I’m going to refer to him as Neo (He will appreciate the reference.) Neo has changed the way I think about intrusive thoughts, but more importantly the way I feel toward opening up about them.

Maternal OCD is a mental illness that affects women in the perinatal period and includes intrusive and obsessive thoughts followed by compulsions completed in order to relieve some of the discomfort from the thought. Ironically for me, my most intrusive thoughts were about convincing myself I had, or was going to develop severe mental illness (the irony isn’t lost on me) I first believed I was developing psychosis and felt disassociated often, then I believed I was suffering from severe OCD despite not having any compulsions.

When I discussed this with Neo he went through a protocol of having me fill out an OCD assessment and we discovered that yes I have obsessive and at times disturbing thoughts, but I don’t have the compulsions in the same way a person with Obsessive Compulsive Disorder might. So why did I feel as though talking about my fears meant I was constantly reassurance seeking?

The truth was there may have been an element to seeking reassurance, but for the most part I was doing what I needed to do, engaging in therapy and discussing my fears.

Once I finally opened up and said aloud that one of my biggest fears was I didn’t want to be alone with my baby because I was terrified I would have a psychotic break and murder him whilst he slept, I was not only able to then unpack this thought and see it with clarity for what it was, just a thought. But I also learned that I’m not alone, not even a little bit.

The mind plays tricks on all of us occasionally and thoughts are the perfect segue into us believing we are not good people and therefore convincing us we’re unworthy of the love we so desperately NEED to give ourselves particularly in the early stages postpartum.

If we all talked about our deepest darkest thoughts we might be less bothered by them, but there is so much assumption and stigma attached to thoughts. People believe that if you think something you must feel it. With intrusive thoughts it’s the exact opposite.

The vulnerability of a woman who has just been through childbirth is like no other time in her life, the fear that we feel is immense. I know I personally believed if I told the truth about my thoughts immediately postpartum that my children would be taken away and I would have been sectioned.

You don’t have to open up about every thought in order to dismantle their hold on you though, you can put in to practise strategies and use them for all thoughts that cause you distress.

Neo recommended a book for me to read during the early stages of recovery and it’s called The Happiness Trap and is written by Australian doctor, Russ Harris.

In the pages of the happiness trap Harris provides tools to defuse yourself from negative thoughts and the book itself centres very much on acceptance. It took me a while to come round to the idea that I would ever accept distressing thoughts, but the idea is not to engage with them, just to accept them for what they are, random mental events and words. I won’t say I’m cured, because that would be a lie, but I’m working towards how to better manage intrusive thoughts and not allow them to take over my life.

Dr Russ Harris The Happiness Trap

If you’re suffering from intrusive thoughts in the perinatal period I would urge you to talk to your doctor. I know it’s hard, you may be feeling judged and terrified, but I promise you the road to recovery starts when you learn that you are not alone with these thoughts.

Other organisations that can provide help during the perinatal period are:

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