When Its No Longer Just Grief.

I’ve spoken in brief about my own mental health on my Instagram lately, and I thought it was time to bring the conversation over here. Especially when many people echo back me too whenever it is spoken about.

Roughly, since Leo should have turned two in January, I’ve found a distinct shift in my emotions. Something has felt different – far more visceral, dark and uncontrollable. Tapping into any level of emotion, quickly descends into visualising the events surrounding Leo’s death in full overwhelming force. As if it serves as a gateway. Whilst I have found ways to slow the fall, there have been days when its completely taken over.

Those memories (specifically, finding out that he died, and awaiting labour) have become intrusive and anxiety filled, when before they were memories with just sadness, one’s that I could think about with a gentler level of ease. Far from my favourite memories, but safe(ish) nonetheless. I don’t like to refer to these memories as ‘unwanted’ (given its hard to start getting picky about memories of Leo when we have so few), but the reaction to them certainly is unwanted. Now, I suddenly fear them and the emotional panic that they elicit.

I’ve started questioning and evaluating every move in his pregnancy, recalling my actions – or lack there of – and attributing them to his death. Finding fault with myself. Guilt has been weighing heavy. Really, really heavy. I fear getting to the point of accepting full blame. What then? It doesn’t matter how logical my brain is, how much I know it wasn’t really my fault, it doesn’t change how much I feel like it is. This in turn has eaten away at my own feelings about myself, my confidence, my capabilities, my worth. If I failed at the most natural of things, how can I be good at anything in life? 

This emotional shift is different. It isn’t grief. I can manage the grief, the sadness, embrace it when I need to, comfort it and accept it as my sidekick for life. But this is different. It is physically draining, overbearing, fear inducing. I started to think I might need more help when I could now seen that me and The Wife weren’t managing it together anywhere near as well as we’d manoeuvred through two and half years of grief. That, maybe, I (or we) were out of our depth with this one.

I’ve had counselling before, and it helped. Massively. But I recognise that the needs felt greater this time. During Maternal Mental Health Awareness Week, there was so much talk about various issues, and about seeking support. One such post (thanks Susie Verrill), resulted in me impulse self-referring myself online for help through IAPT. It meant I could bypass the GP (I’m sure they would have been helpful, and absolutely where people should go, but it felt like a hurdle I could do without, if given the opportunity).

The next day, I got a phone call to arrange an over the phone appointment for further assessment. It was about 45 minutes long, and a really hard conversation – it was probably the first time I had to say out loud what was in my head, what I was feeling, and why I was struggling so much. She decided to put me forward for a further face-to-face assessment for Cognitive Behavioural Therapy for trauma.

The act of self-referring and that phone call was a help in itself. It allowed me (and my wife) to recognise that I wasn’t just being a complete annoyance/drama queen/crazy lady – something else was happening here, beyond grief. It showed me just how important validation is, especially when you have already been living with something like grief. Her acknowledgement of my concerns legitimised the feeling that this was different, and that I needed support. You hear a lot about people feeling like they aren’t worthy or don’t warrant support when it comes to mental health, and it is really relatable. Those check point questionnaires make me concerned that I’ll score too low, and be sent off with a recommendation for Headspace(still worth a download by the way) and thats all. After all, don’t we all have days when you feel on edge? I knew I needed more – but I worried I could explain it away or underplay it. Saying it all out loud, and someone else recognising it really does help.

Today, I had my initial face to face assessment. I felt really nervous about it. Having to actually face the memories that are challenging you so much, in a random hospital office with a stranger, is a really daunting concept. I didn’t know what to expect, and I don’t really trust my ability to control my emotions. I know I don’t actually need to in that type of environment, but you equally want to be able to speak, right?!

But as with anything that we tend to be nervous about, it was actually really helpful – we chatted more about how I was feeling and tried to unravel what was going on. I expressed how I really just wanted to understand what it was, what my options for treatment were, and what was available locally should those two things not be the same.

After a decent chat about it all, through constant tear wiping, she explained that whilst they don’t formally diagnose through this service, and even though she didn’t feel I was experiencing full flashbacks or nightmares, she could say that she recognised my symptoms as being reflective of Post-Traumatic Stress Disorder, and would treat in accordance to it. PTSD. I suppose thats as close to a diagnosis as I need right now.

There was a time when I really thought I’d dodge that obvious bullet of stillbirth.

I’d been expecting it. Somewhat wanting it. Grief can be so undermined. And every other emotional response you experience is swept away with it. Everything we feel, people explain away as grief. Yet, what if it isn’t actually grief? Trying to separate the two from each other is challenging, but we can’t ignore what else is going on, just because ‘grief is a normal response to bereavement’. This is why I felt I needed a label or a diagnosis – to legitimise and validate this as something other than grief. Linked, yes. From the same incident, yes. But not the same battle. I needed that for me, but also for others around me to understand.

Even saying it here, my mind is trying to explain it away. That without it in black and white, will people believe me? Am I making it up? Overreacting? Surely people have it worse? I don’t feel like everyone’s symptoms present in the same way, for any physical or mental health issue, so we shouldn’t really compare. All I do know, is that its been tough at times over the past six months, and this feels the right explanation and the right focus for me.

We then discussed therapy options : Cognitive Behavioural Therapy (CBT) for Trauma, or Eye Movement Desensitisation and Reprocessing (EMDR). I’ve heard of both, but I’ve overwhelming heard more about EMDR from those within the baby loss community experiencing similar (initially from Leigh, thanks Leigh). People have talked about it being hard work, but feeling lighter afterwards and able to remember without the overwhelming emotional response. It sounds a bit… random, but if its works, it works.

So I have a few weeks before I can start EDMR, but I feel like its moving in the right direction. I wanted to share, and I’ll continue to share as and when I can, because I feel that even though we all acknowledge that stillbirth, miscarriage and baby loss is traumatic (it’s every parents worst nightmare, after all, right?), we don’t talk about the impact of that trauma as much as we should. We aren’t told warning signs or symptoms to look out for in each other and no-one really explains the difference between grief and trauma, or what to do about it. I really do feel that grief ‘normalises’ so many other emotional responses, and it just leaves so many of us feeling even more isolated and helpless.

It was the Baby Loss Hour that we hosted on Birth Trauma that allowed me to start realising the difference between grief and trauma in relation to myself. You can read it here, but this quote from Petals, sums it up for me : “In our experience, grief is expected after the loss of a baby, but the trauma experienced is often neglected or confused as the same thing. In fact they are two quite separate things in terms of how they manifest themselves and how they should be treated.”

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If you need help… 

IAPT Self Referral : If you feel like you need support, you can find out about your local services and self refer here.

Mind : 0300 123 3393 / info@mind.org.uk / Text: 86463

Samaritans : 116 123 / jo@samaritans.org

If you need urgent help, please call 111.