On feeling unseen

I’ve been thinking a lot about the theme of feeling unseen recently, as it’s a theme I hear often from women I talk to in the miscarriage and infertility community.

And honestly, it’s something I have felt at times in my own journey too. The fact is that there’s still too much silence and shame surrounding these issues - even though social media, podcasts and support groups/charities have made some great inroads in recent years.

In her latest book, ‘Atlas of the Heart’ social researcher, Brene Brown focuses on four different types of grief that people can experience after loss; acute, integrated, complicated and disenfranchised.

• ‘Acute grief’ best describes the early stages; shock, anger, devastation, and disbelief

• ‘Integrated grief’ describes the stages of acceptance where someone begins learning how to lie with this new reality

• ‘Complicated grief’ refers to types of loss that are ambiguous, when there’s often no sense of closure, or being able to move forwards

• Finally, ‘disenfranchised grief’ is a less widely recognised or openly acknowledged form of grief, which is often less publicly supported through social norms and cultural rituals or mourning practices.

I was interested to note that Brown highlights miscarriage & infertility as a specific example of disenfranchised grief – because for me, this absolutely rings true.

If you lose a baby within the first 20 weeks of pregnancy, the death cannot even be formally registered – even in those instances where that baby has been ‘birthed’ but stillborn. And indeed, for the vast majority of earlier losses there is no scan photo, no baby announcement, no body, no ceremony, and no formal way to remember that a life existed at all (though increasingly parents are coming up with their own creative alternatives eg. planting a tree, engraved plaques or jewellery, getting a tattoo).

What’s more, even when someone’s miscarriage or infertility is shared with immediate family and friends, there is still a huge difference between ‘knowing of’ and really ‘knowing’ in terms of fully understanding the longterm impact or full weight of sadness and disappointment and difficulty.

Often grief still remains a silent struggle that happens mostly in private, behind closed doors, mostly carried only by the couple involved.

But why does any of this matter so much? Why not just grieve in private anyway? Isn’t it easier and less messy for everyone else?

Because I believe that healing almost always happens best when our pain is worked out in community with others - not alone.

I’ve seen this time and again with women that come through the SPACE miscarriage and infertility network - most of them just need to feel seen in what they are going through, to have their pain witnessed, and to be told that how they are feeling is valid and real.

It’s almost certainly been my own personal experience too - that when you bottle up grief, you tend to get stuck emotionally.

Of course, not everyone will (or should) spill their grief stories all over the internet, but they should absolutely have space to talk about their experiences - with trusted family/friends, with a counsellor or therapist, or in a support group setting if they have access to one locally.

4 types of silence

In interviews I’ve given on this subject people often ask me why there’s still so much stigma and silence surrounding these issues, when as many as 1 in 4 pregnancies end in loss, and 1 in 8 couples walk through infertility today.

I think that this continuing reluctance to talk openly about this subject and support those who are grieving the loss of a pregnancy, or a child they hoped for has a few key contributing factors, each of which I’ve outlined below:

 1.     Historic silence

There continues to be this out-dated but still widely practised cultural norm around couples not sharing about or announcing a pregnancy until they hit the ‘safe’ 12 week mark, after their first healthy scan.

I’m not even really sure where this idea originally stems from, other than the fact that the majority of miscarriages tend to happen within the first trimester. But this ’12 week rule’ can also create some huge problems for those facing loss especially.

Firstly, it continues to invalidate people’s very real experience of grief over earlier losses, reinforcing the idea that an early miscarriage is something to ‘hide’ or feel ashamed of. All of this massively impacts a person’s ability to access support, properly grieve, and their ability to heal in time.

Not only that, when I reflect upon my own losses or speak to other women who have experienced loss, they almost always agree that this 12 week rule doesn’t make sense, as it’s just so arbitrary - those who have undergone ivf or already experienced a loss previously will generally have already seen ‘healthy’ baby scans well before 12 weeks, and those who have experienced later losses will also tell you that no stage in pregnancy is really ‘safe’.

Why then, do we continue to perpetuate this old fashioned idea that we should keep quiet until 12 weeks - just in case anything goes wrong? After all, if something does ever go wrong, you’ll almost certainly need some friends and family and work colleagues to know so that they can support you…

 2.     Cultural silence

Beyond the 12 week rule, I think another cultural barrier that reinforces this sense of silence around miscarriage or infertility is that both subjects sit at an uncomfortable intersection of several different topics which we find difficult to talk about openly in our culture - sex, the female anatomy/cycle, and death.

The social awkwardness that their very mention can create in conversations, (and let’s face it, especially for us Brits!) can mean that even those who do choose to be honest about their situations often experience a wall of silence from others.

Often people simply don’t know how to respond, or what to say - so they say nothing, or they deliberately ever bringing up the subject again.

But for the one suffering, the message received and internalised when this pattern repeats in their social interactions is that their story is too upsetting, their emotions too uncomfortable, their questions too big to answer, so they learn to self-edit in order to spare embarrassment or discomfort for others.

How does this look in practice? When someone asks, ‘When are you going to have a second?’, instead of saying ‘Actually, we’ve been trying for three years already with no success’, the temptation is just to shrug and fudge the question with a mumbled answer about not being sure.

Or when a loose acquaintance enquires, ‘Do you just have the one child?’ it can often feel easier to simply say ‘Yes’ than to delve into the more complicated but honest version of the answer about having multiple babies in heaven, undergoing all those invasive treatments and tests, and then eventually running out of time.

 3.     Medical silence

Although medical advances in reproductive health have come on leaps and bounds over recent years, with various fertility treatments supporting many more couples to conceive, they are far from the catch-all solution that many people assume them to be.

No one really talks about the fact that IVF success rates hover around just 20-25% (far lower with advancing maternal age), or that recurrent miscarriage continues to be a very poorly researched, funded and little understood condition the confounds all medical specialists.

Medicine is still unable to diagnose the vast majority of infertility cases, or to find any clear cause or cure for miscarriage, and these huge gaps in support and treatment can have a further illegitimising effect.

If a cause can’t be found and a condition can’t be named or treated, then what does that say to a couple? When their struggles can’t even be named, let alone explained, or resolved; it’s like medically, they don’t really matter or exist.

4.     Spiritual silence

There can also be a kind of spiritual silence on this subject found in many churches and faith communities too.

Of course, most people are happy to pray for a couple who is struggling to conceive, or to sit with and listen to a friend in their grief. At least, initially. But what happens when the infertility continues, or further miscarriages follow? When the situation drags on for years and years? 

Often it can begin to raise difficult questions for individuals, like: Where is God in this experience? Did He let my baby die? Why does God seem so silent in my suffering? Why can’t I have the family that I long for? Is this really all part of God’s will? It can often be hard to articulate these kinds of doubts and fears aloud with other believers, and even when they do, they often get shrugged off.

And in the absence of any clear theological teaching around reproductive loss and infertility within most churches today, often well-meaning people can say damaging things…

Sometimes these come in the shape of hollow platitudes that seem to suggest that what the sufferer is facing is perhaps God teaching them a lesson, or part of God’s perfect plan or will. At other times, it might even be implied that infertility is due to a lack of faith or a hidden sin, as opposed a genuine physiological issue which needs medical investigation and treatment.

What’s more, many modern evangelical church communities tend to be heavily influenced by prosperity thinking, which means that there isn’t always much space created for people to express lament or doubt or grief.

As a result, those journeying through this season can end up feeling isolated, marginalised, misunderstood and unseen by their own faith community, at exactly the time when they need this spiritual support the most.

 Hagar’s story

In light of all these forms of silence that continue to existing around miscarriage and infertility, I’ve been reading and reflecting on the story of Hagar again recently. And I think it’s a story that has some useful insights for anyone who has ever felt unseen in the midst of struggles – either by God or by other people.

For anyone unfamiliar with her plight, Hagar was a young Egyptian slave girl who’s story unfolds in Genesis 16-21. Used by Abram (later renamed Abraham) to help bare him a child outside of God’s promise, and then cruelly abused by his wife Sarai (later renamed Sarah) who was barren and enraged with jealousy - she eventually fled with her unborn son and broken dreams.

Hagar was undoubtedly someone who knew what it was to feel unseen and unheard in her struggles too; a woman who had no real voice, no rights, and no personal agency over her own life in the culture, time and context she lived in at all.

But God met her in her wilderness journey and spoke to her directly, calling out to her by name - and for Hagar that single encounter changed everything.

El Roi - the God who sees

God saw Hagar not as a slave, a servant girl, or the property of someone else; but as a woman with intrinsic value, identity and worth in her own right - as someone worth pursuing and speaking directly to.

In response, she names the Lord ‘El Roi’ which is a Hebrew word meaning ‘the One who sees me’ (Genesis 16:13).

Isn’t that incredible? The God of heaven and earth sees her in her struggle, and not only that, but pursues her and calls her by name.

I know that many of us still face shattered promises and broken dreams in our lives in different ways today, and that at times we can also find ourselves asking ‘Does God see me?‘, ‘Does He notice what’s happening?’ and ‘Does He really care about my situation at all?’

These are certainly all questions I have found myself asking at many points through my own fertility journey. But in Hagar’s story, perhaps more than any other place in the scriptures, I find the reassurance that, yes, God really does see my pain and my struggle.

And that same God who saw Hagar in her wilderness journey long ago, is still El Roi – the God who sees you and I today.

God is still the One who sees all things, and holds all things together, and can be trusted with all things – even in those times when you feel unseen.  

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