Childlessness and Pregnancy Loss

I listened to an interesting podcast the other day. Those of you who know me might be surprised - I definitely struggle with podcasts. In fact, I started to write an explanation, but have turned it into a post on A Separate Life this week. But this was one I had to hear. Because Loribeth featured on The Full Stop podcast, in a discussion that is very pertinent to me - Childlessness and Pregnancy Loss. Don't continue if you're not ready for this, or if you have difficult feelings around pregnancy and pregnancy loss. (Though I try to address these at the end.) You'll find the link here via  Loribeth's post about the podcast. And a warning: it's a tear-jerker!

As any regular reading of No Kidding in NZ knows, I had two pregnancy losses in my path to Otherhood, and then spent years participating in and moderating an ectopic pregnancy website, before I even thought of starting this blog. So I was interested to see what angle the discussion might take. Any limited time for four people to discuss a topic is, of necessity, going to limit the discussion itself. (In her post, Loribeth mentioned the "gazillion" things she wished she'd been able to say!)  We understand that. And there were some very interesting points. These are my comments on it.

First, the issue of silencing ourselves was raised. Loribeth has talked about this too, but I was thinking about it from my own perspective. Talking about loss seems to be largely taboo in our society. The whole "don't say you're pregnant until after the first trimester" really says "it doesn't count until you are properly pregnant." (I had someone say, "oh, it's still really early then" as if it didn't count, even though my nausea was very real. I'd announced my pregnancy early only to my family at Christmas, as they would have wanted to know why I wasn't drinking! But it was dismissed.) After a loss, the rule of no early announcement says, "we don't care about early pregnancy losses." People don't want to hear it. It's as if you're "not really pregnant" or, as a friend said to me, "you never had anything so there was nothing really to lose." So even when we have a loss, we are unable to talk about it. We are silenced. 

In ectopic terms, this too is incredibly dangerous, as it means a general lack of awareness by both family and friends, the women themselves, and their doctors. Women's early pregnancy pains or other symptoms are easily dismissed. I was lucky that I had a great GP, who wanted to monitor my HCG levels to ensure I was having a miscarriage. When my levels did not fall, but rose insufficiently, it was clear I was not - it was an ectopic pregnancy, which instantly means "danger." I've since seen many many women - one woman is too many - be told by their doctors not to worry, they're just having a miscarriage, only to end up in hospital with life-saving emergency surgery after internal bleeding, or needing emergency medication. I remember Bamberlamb telling me that, when presenting at hospital with symptoms of her third ectopic pregnancy, she had to ask the nurses/doctors for their names so her husband would know how to name if she died as a result of a ruptured ectopic pregnancy. It was only then that she got the help she needed. And it was only because she had been active on the Ectopic Pregnancy Trust Messageboard that she knew all the symptoms and what they meant - and knew them far better than the medical professionals at the emergency department.*

But, as the podcasters noted, we also silence ourselves. At first we do it out of self-protection, I think. I found I could talk about the mechanics of my ectopic pregnancies - the reality of the medical treatment, what implanted where, etc - more easily than the fact that I lost the future baby. Anything involving emotions would have set me off - I wasn't much of a crier before loss, but then the floodgates opened! So I preferred not to talk about it, except with a select few, or online, when you can type even when the screen is blurry through the tears. I also felt embarrassed and ashamed. I don't now. Not at all. But at the time, emotions are complicated. Protecting ourselves as we work through them is important self-care.

We also silence ourselves, trying to be sensitive to others. We don't want them to be uncomfortable, so we hide our own emotions and therefore our own experience. We don't want newly pregnant women to worry any more than they might. But in doing that, we are also not being honest about how it affects us, or the significant percentage of women who experience loss or childlessness. I find it interesting that it is often the grieving person who is forced to be the most sensitive to others. (Don't get me started!)

But all this silence is not entirely honest either. When we can cope, when we are ready, talking about loss openly is much more honest, both to our own experiences and our own relationships with others. It must help those who will come after us. Because there are always those who come after us, and knowledge is important, awareness is life-saving, and information is power. That's why I worked in the field (voluntarily) for years, and why I still try to talk about it openly when I feel it is appropriate and/or necessary.

Support, as Lori mentioned on the podcast, is something we take when we can get it. But often that support drops away, especially if people go on to have children and drop off the radar. She found that in her support group, and I found it also at the ectopic messageboards, as more and more of my friends went off and had their families, and disappeared. I didn't really belong there except in the anonymous moderator role. But my presence, like Lori's as a leader of her support group, was important visually, just to let people know we were okay. And then I found blogging, where I do belong, even if I live on the other side of the world from most of you. That's why I love this community so much!

Michael, of the Full Stop podcast, also talked about how "the ghost (of his and his wife's losses) continues to be with us." Their losses are around birthdays and Mother's Day, and that is hard to ignore. I can relate to that. I learned I would never have children at a scan on my birthday, and both my ectopics took place over Christmas and New Year. Others I know remember the dates of their last IVFs, or when they decided not to look at assisted reproduction, or adoptions fell through or they had no choice but to opt out.Though I'd like to give some hope. After over 20 years, I can think of those dates and losses with love and compassion for the woman I was, but largely without the pain. (Although I admit that the Mother's Day reminder is an unkind double whammy.) I've written about this here, and here, amongst other places.

His perspective on how a man grieves, whilst at the same time wanting to help his wife, is complicated too. He had nowhere to find support. I remember my husband saying that his GP asked "if his wife was over it yet." I don't recall him saying the GP asked how HE was handling it. And I remember how, when I was feeling better recovered and stronger, that my husband felt he could finally open up to me more about his feelings. 

Finally, there was a really interesting discussion around envy amongst the childless community. Even though we are all living lives without children now, the speakers felt the envy of those who never got the joy of that positive pregnancy test, or who felt the losses of the children they never had but don't feel they can talk them as losses, or those who never had their losses recognised, or those who never named their losses or had those names recognised by family and friends, or those who never held their lost babies, or those who never saw them take a breath, etc. And those who are envied might also envy - it's only natural, I think. They might envy those who never felt the fear of an emergency hospital intervention, who never felt the grief of a late-term or full-term loss, who never had to take medication or have a D&C to end an incomplete miscarriage, who never had to tell family/friends/colleagues of their loss. 

Envy is, of course, for what the other person had, not what they lost. It's a blindness, and is only about the loss felt by the envious person (eg. the lack of a pregnancy positive, or a good scan, or heartbeat, etc). And that is real. But we also need to know the existence of that envy can feel like we are negating what the subject of that envy has lost. That the magnitude of their loss feels cancelled out by the moments they had that we might not have. 

That's where compassion comes in. And sometimes, compassion can only come with time, when we are less self-centred, and our envy can morph into true compassion and empathy for another's loss. I think, I hope, that the childless community is good at that, ultimately. Most of us recognise that everyone's grief is different, and there's no better or worse.

* I know all this is wordy and perhaps repetitive. If one woman finds this information about ectopic pregnancy, and it helps her or someone she knows, it is worth noting.

 

World Childless Week and my No Kidding story

World Childless Week starts today. This is something we should celebrate, all of us. A week for thinking and writing about the road less travelled, the childless of our societies, for whatever reason. Our voices are so often forgotten, ignored, or dismissed, how fabulous is it that we have a week heralding our stories, talking about our lives? It is there to help us all feel less alone, and more understood.

There are so many interesting topics and discussions, webinars and workshops, that I for one won’t be able to keep up! Check the all out at the link above. These are the topics being covered by submissions this year:

• Monday 16 September - Our Stories
• Tuesday 17 September - Childless Person of Colour
• Wednesday 18 September- The Importance of Pets
• Thursday 19 September - Childless Friend or Foe
• Friday 20 September - No Kids? Do you want Mine.
• Saturday 21 September - We are Worthy
• Sunday 22 September - Moving Forwards

Head over to WCW’s Our Stories page and check out all the other stories there.

As I said last year, this entire blog is my story – in much detail! It shows my origins, and the development of my thoughts. I even have a separate page titled My Story that includes a piece written in 2011 for the Huffington Post, and an update a decade or so later. I’ve repeated aspects of my story in many guises over the last two decades and more, most recently in the book Otherhood. So once again, I have decided not to write a submission this year. It's all here for you already. There’s only so much repetition that people can cope with, after all!

What is most important is the knowledge that my story didn’t end on the day when I knew I would never have children. Far from it! That’s when My No Kidding Story truly began. When I had to truly find out who I was, and how to enjoy life. How to truly live it, regardless of the hand I was dealt, with growth, with compassion, with love and joy.

And so I live my life. I accept what is, and what is not. I embrace the good things – and there are plenty – and remember the losses that got me where I am today. I think about the future – with determination and resolve, rather than with fear and trepidation. I relish the friendships and wisdom that have resulted. As I’ve said before, and will say again, I am someone who is, simply, enough. That knowledge is such a gift.

Monday Miscellany: Tribes, and Recovery

I just found something that made me happy. The first ever comment from Loribeth, on my blog A Separate Life, back in early October 2010, before I even started No Kidding in NZ here. Thanks, Loribeth! She mentioned finding me on Pamela's blog, which was the first one I found. Thirteen years ago. It feels like ancient history now, I've been writing here so long! And I was already almost seven years into my No Kidding life. Yet I felt the need to write about the subject. My post that Loribeth commented on was about intolerance - including in the No Kidding communities. So a month or so later, I started No Kidding in NZ. I felt that I still needed support, and knew that I could also give support. I wanted to find my tribe. And I did. You!

I had drinks and dinner recently with an old friend. She was telling me about a friend of hers who was struggling with her split from her husband. My friend has been through this too. She pointed out that the loss and recovery - effectively the grief process - lasts so much longer than people think. It took her about five years, she estimated, probably prolonged due to the behaviour of her ex. But it was a longer process than she had expected, or that others really realised.

It reminded me of going through my ectopics. Everyone thought I'd be over it in a few weeks. Then there was the permanent transition from infertility to childlessness that was a loss and grief that wasn't even recognised by most. It took me a couple of years to work through that intense loss, and longer to start to feel like me again. Of course, there were lots of good moments during that time, as gradually I felt better and better, came to acceptance and understanding, learned resilience and coping methods. But it is a process, and like that of my friend, and her friend, and as I did, each year you'll notice you recover sooner, bounce back more easily, and learn to live with yourself. Becoming resilient. Embracing and celebrating as you go along.

Twenty years on: It gets easier

I recently realised that this time twenty (gulp) years ago, I was enduring one of the hardest times of my life. At Christmas the year before, I was newly, happily, but tentatively, pregnant for the second time. But even on Christmas morning, my temperature dipped, and I worried, despite the beginnings of morning sickness starting to appear. Driving home, up the island, there was a tiny bit of spotting. We got home before New Year, and it all began.

I knew I had lost the baby, but my body decided to be “interesting.” My HCG levels kept rising, too slowly, then disturbingly quickly. I was hospitalised twice, once for an operation, but as my levels kept rising, I was brought in again, for close observation and treatment, for days and days of waiting misery, with a baby crying down the hall, just in case I forgot why I was there. I endured a potential cancer diagnosis, fortunately cleared by CT-scans, though not helped with stupid questions (“is there any chance you might be pregnant?” the radiographer asked me) and waited some more, until finally the hormone levels plateaued. The pohutukawa trees were in bloom outside my hospital room window. It was warm, the windows were open, and summer was happening outside, but to other people.

My life and that of my husband was more waiting, along with endless hospital blood tests and scans to see what was going on, being thrown together with pregnant women at hospital, forced to see all the charts of a progressing pregnancy in the waiting room, and being the source of fascination to the doctors and nurses. And we waited.

I got through the time by sharing this with fellow ectopic sufferers on a message board, though they were almost all in the UK or US, and I was in a completely different time zone. But I wasn't sleeping. And they were there, when I was here in the darkest of nights. I remember being overwhelmed with loss when our internet went out for a day or two – these women were my life-line, and losing them even for a few days was hard.

It was discovered in a scan that I had grown a new blood vessel, one as thick as a ballpoint pen, and they made plans to deal with it, and I was admitted. Then as it seemed to grow, they cancelled those plans, and made new plans. I was admitted to hospital again, for an hours-long procedure called an embolization. I was lying for so long on my back that a disc in my spine distorted. It was my first experience of agonising back pain, but not my last. The doctor didn’t care, he just wanted to finish the job. I’m sure he thought I was exaggerating. But I wasn’t.

I then had to wait weeks more to see if had worked, and then given one final operation to remove what was left of the vein. By now it was April, and I had been under hospital care for four months. My friend had given birth, and I’d visited on one of my many hospital visits down in the Unlucky Women’s Clinic, as I called it.

From the outside, it looked as if our lives were the same as they had ever been. I was working (luckily from home, as I was now self-employed), and physically looked normal. But it was all consuming. I was now 40, and the clock counting itself down was deafening. It was another two months before I was given the all clear, and could start my final fruitless family-building efforts. 

Twenty years on, I can write this without tears. I want to reach back and hug that woman who felt so fragile, but tried so hard not to show anyone (except a few very important people) how much it hurt. I want to enfold her in my arms, and let her know that she will be okay. That things will change for the better, and that she will grow in confidence and compassion and wisdom. That writing things down helps, and will become part of her life. That she’ll come to love pohutukawa, despite or perhaps even because of their association with the loss of her ectopic babies. I’ll tell her with a wonderful smile that twenty years on, she will continue to be supported by the most amazing people that she will meet and get to know in the most unconventional ways. That it will get easier, and bring gifts she cannot expect. And that I am not kidding.

 

Monday Miscellany: No Kidding version

(albeit I am writing this on a Tuesday)

As I mentioned on A Separate Life, NZ is in the grip of a tropical cyclone at the moment. We are fine here in Wellington, but further north it is more difficult. I heard reports on the radio yesterday that on Sunday night, only a few people had turned up at emergency centres, though more were expected that day (and many more, following multiple evacuations, yesterday and today). I thought about the people who had gone early - maybe their houses had already flooded in previous events, or maybe they lived alone, or knew that they didn't have family around to help them. I can imagine being one of those people. Being childless does make us more vulnerable. But more aware of the risks, and the independence to look after ourselves. I hope the childless in the north of New Zealand are all safe and dry.

On a brighter note, last week I had the wonderful opportunity to meet Lilly (from a blank new page) and her husband who are touring New Zealand. (And I hope they are safe and dry today.) We hosted them on our deck for drinks, then dinner, then we talked and talked for hours, and farewelled them the next morning, happy that we had met, and made some new friends. What a delight it is to meet fellow No Kidding bloggers. We talked briefly about not having kids, but mostly we talked about other things. We met through childlessness, but we connected in many other ways. It was such a good reminder that we are all so much more than our childlessness. And Lilly and Mr Lilly (lol) were so much more - such delightful people, interesting, intelligent, thoughtful, active, adventurous. I am Not Kidding!

I am travel planning again at the moment - some of the final decisions to be made. It is interesting when I look at hotel sites. We're going to stay in a cottage that doesn't allow children, for safety reasons. That's a big plus for us. Hotel rooms noted as "family" suites often have a sofa bed. I like the look of them, because I like to have a sofa to lounge on after a busy day sightseeing, and when my husband is spread across the bed reading on his ipad. I think how cramped they would be with two parents and kids. I found a video of a panoramic route we are planning to drive. It was very informative, but was made by parents, who had to skip a lot of places because they had kids with limited attention spans. And as much as I would have loved to travel with children, I do have to admit that there are definite advantages to travelling without them.

A footnote: I love meeting fellow bloggers. There are a few who are serious about coming to New Zealand. I am happy to give advice in the planning stages. I'll try and help you see penguins. And I cannot wait to meet you!

 

Childless No Kidding therapists and support

First, a disclaimer. I am not a therapist. I also have not seen a therapist, aside from two sessions when I went through pregnancy loss and subsequent IVF attempts. My comments therefore are based on only my experiences of trust, advice and betrayal.

Those of us who must live a childless, No Kidding life find a real home in this community, enjoying the depth and honesty of our discussions (here, on blogs, and other social media groups). Many of us want to be able to help those coming after us, or struggling to accept our positions, either by writing (or podcasts), or through more professional means. I’ve known quite a few who have gone on to qualify as therapists, or have seen therapists redirect their practices towards a No Kidding clientele. This provides a welcome alternative to therapists who just cannot see the perspective of those of us who don’t have children, the  loss of a future we had hoped for, the grief involved, and the ongoing losses and reminders of those losses that are all around us. Some of us have had an experience of going to a therapist who then got pregnant, and who struggled to (or didn’t try to) understand the perspective of their childless-not-by-choice clients.

But what if a No Kidding therapist is themselves having difficulties locking the door on their family building efforts, moving from Infertility’s Waiting Room through to the No Kidding door? After all, many of us have been diagnosed with “unexplained infertility” which always leaves that small window open to the possibility of a surprise pregnancy. Would a therapist in that situation fully understand No Kidding patients/clients, if they still held on to that hope? How might that affect their ability to understand our community? And if a surprise pregnancy occurred (however rare an occurrence that might be), how might that affect both her relationship with the community, and with any potential patients/clients they might have?

There is a huge difference in our feelings between still hoping and thinking there may be a chance to become a parent, however small that might be, and realising or accepting or truly knowing that that will NEVER happen. Even when we are close to the “it will NEVER happen” acceptance, a small window of hope doesn’t truly bring us face to face. I know that from my own experience, and from reading about and sharing experiences of many other women over the last 20 years! That small open window is an escape route that we cling to, being aware and glad that it is there, even when we are trying to accept and move on. It affects the way we think about ourselves, others, and the future. I can’t help but think it would influence a therapist, and the levels of advice and understanding they might give.

The difference between having that small window still open, and having it shut, is marked. It required a quite different attitude and outlook on life. Even with the window closed, there was still a tiny sliver of a gap for me, an extremely unlikely one (and one that my Fertility Guy scoffed at), and intellectually and emotionally, I knew that it was not an option. Understanding the difference between having a potential option, and no option at all, is critical. The loss was extraordinary. That needs to be understood by any therapist, or even by bloggers and friends in our community. To think that you were talking to someone who understands this, and then find that you were not, might feel like a betrayal.

Betrayal is a strong word. But I personally have had that experience with a couple of people on message boards some years ago. I thought I was talking to friends who truly understood my situation, who could joke with me about not being part of the exclusive “mother’s club.” I felt a solidarity and level of community that was supportive and allowed me to begin to heal. Only later to find that they actually already had children, much older children, and had hidden that from me. Yes, we had all experienced ectopic pregnancies, and shared that. But the outcomes – life without children – were very different. We were not in the same boat – far from it. Though I no longer feel the hurt, I am still surprised at the deception involved, and the degree of betrayal I felt when it was exposed.

Perhaps though, this is an example of the comfort that can come from those who (seemingly) make an effort to understand. Is it necessary or not necessary for them to have been through it? I think the difference is that I believed I was talking to people who had been through the same experience and emotions as I was going through. Or that they were going through it with me, too. If I’d known differently (as you might with a therapist), I might have felt differently too. It wouldn’t have been a betrayal, or hurt so much. But the level of sisterhood I had felt might not have been there either.

Likewise, I've had one or two weird experiences with women who completely turned on the CNBC community, who felt they deserved their good fortune, felt others “gave up,” and  attacked some of us saying that they were "not as resolved as they say they are" (expecting “resolution” to magically mean they were no longer grieving). The levels of judgement and lack of understanding and empathy were quite surreal. Experiences like this make many of us very hesitant at the prospect or reality of dealing with surprise pregnancies in trusted confidants or therapists.

There are of course friends and readers who comment here who are parents and who still provide support and validation and healing. I don't want to discount their value. But the core of the community is those who are childless not by choice. So whilst it might not be necessary to have a therapist who is a member of the No Kidding childless-not-by-choice community – especially when in the most intense grief and anguish – it certainly would be helpful and is worth searching out. And whilst you don’t need to be part of the No Kidding blogging or social media community to get comfort and support in healing, it certainly helps our level of acceptance and understanding to have that.

I’d be very interested in your thoughts and experiences around this. Have you had help from therapists who were parents or even pregnant at the time? How do you think you'd react if a blogger in our community suddenly announced a surprise pregnancy?  (Or surprise children?) As you might have guessed, this post arose from a question posed to me by a reader. I knew what I think, but I'd like them to hear from the wider community. Please, add your voice and help my reader.