It was my birthday this week. Dan surprised me with a trip away – staying in a hotel in Marbella old town that we’ve been to before and loved. The last time we were there was five years ago, just after my third miscarriage.
Which made me realise that it’s also now been five years that I’ve been writing about recurrent pregnancy loss.
I’m never quite sure what to count as this blog’s ‘birthday’. I started it semi-anonymously, after the second miscarriage. I’d written a piece about the first loss earlier that year, under my real name, for a newspaper. At the time, writing that feature had felt like drawing a line under the experience. By the time it came to be published, I was already pregnant again – and, besides, hadn’t everyone I spoke to and everything I read reassured me that the first miscarriage was bound to be a one-off?
But it wasn’t a conclusion, only a pause. A line break – a gasp of white space before being plunged into the next scene in the same story.
It was only after the third miscarriage that I attached my full name to the blog and the thoughts and feelings it contained. And it seems strange to me now that there was once a time when I still took steps to obscure my identity. No surname, separate social media accounts. Which is not to say I don’t appreciate why it is sometimes hard to speak openly about pregnancy loss. (After all, this is one of the key questions of my book: Why do we keep it quiet? We call it a taboo, but why is it a taboo, what keeps it that way?)
But I suppose I have lived with my pregnancy history being public for so long now, it is hard to remember it being otherwise.
Anyway, this weekend’s trip really did feel like the closing of a circle, somehow. Returning to a place as tired, wrung-out parents when previously we’d walked its streets as two heartbroken parents-who-should-have-been. The plaza with its orange trees was the same. The bougainvillea still clambered up walls and along the thick vines of electric cabling overhead in the same way that delighted me before.
We ate in the same restaurants we loved last time. I even – unintentionally – wore the same burnt-orange dress as before. I’ve worn it so many times since, I’d forgotten that I originally bought it while pregnant that third time, optimistically hoping its loose, tiered shape would see me comfortably through the first trimester and beyond. In the end, it had proved the perfect fit for a body that was still recovering from miscarriage surgery; swollen and tender.
But what about us? Were we the same? Now there’s a question. Yes and no – and yes again, I think. There are certainly many things I’ve learnt in those intervening five years. Here are just five of them:
1. You will feel happy again – and sooner than you think
As in, the day after a miscarriage a friend will manage to make you laugh. The sun will still shine on your face. You’ll get drunk or go dancing. It will snow unexpectedly. You’ll eat something delicious. Sometimes it feels impossible that anything could lift your spirits – until it happens.
2. You will also feel sad for far longer than you might expect
This is a lesson I forget and have to re-learn, over and over. For days, weeks, months at a time, I can feel on an even keel. Things that would have once floored me barely register. And then a pregnancy announcement or a random remark at a toddler group will catch my heart off guard (and blow it open).
3. Whatever you’re feeling, you’re not alone
Your worst thoughts. Your ugliest urges and emotions. Things you feel after losing a pregnancy that you can’t admit out loud. Believe me, someone else has felt them, too. Whenever I’ve written anything I thought was weirdly specific, a bit near the knuckle, or just straight-up embarrassing, those are always the things that people message me about: ‘I thought I was the only one.’ ‘Me too.’
4. You can’t always fix it (not all on your own)
One unintended side-effect of more people talking about pregnancy loss is that it can add a layer of comparison where there wasn’t one before: How is it they seem so much more ‘together’ than you? How are they doing x, y, z while you are immobilised by depression/anxiety/exhaustion? Over the years, I’ve often felt crappy that others who’d experienced something similar seemed to cope so much better, projecting a much sunnier, positive attitude than I did. (Only to then learn further down the line that that wasn’t exactly the whole story for them, either). At different points in the last five years, I have needed counselling and regular sessions with a clinical psychologist. Outside help. Professional help. I’m sure I will return to those kinds of support again in future. We love the idea of self-sufficiency and a stiff upper lip. As a society we’re wedded to it, even. But you can’t always fix it all by yourself. You shouldn’t have to.
5. A baby is not the only thing that will heal your heart
I once thought the only way I would feel close to whole again was by having a baby. And while it’s true that some feelings and questions have only resolved since having a living child, I also know now that a ‘rainbow’ baby is not the only escape hatch out of grief. (Actually, another child is not really a route out of grief at all, but that’s another post altogether). We took a long break from trying to conceive after our fourth miscarriage. I didn’t always feel confident it was the right thing to do. Sometimes it felt like an imposition; something that was, ultimately, keeping us from the one thing that would make us happy. Yet, by the end of that year, I did feel happier. To identify any one thing from that year as uniquely healing risks seeming crass, because written down it all sounds so slight. Especially when set against the undeniable magnitude and magic of having a living, breathing child. Rather, it was a series of small moments, kindnesses, jokes, walks, and meals that returned me to myself. Salt, sugar, sex, sky, water. Just small things, strung together one after the other, bead on bead, becoming something bigger and more beautiful than the sum of its parts.
I am so sorry to hear of your 4 miscarriages. Its absolutely heart breaking, and Im so sorry you had to go through all of this.
I hope you dont mind me writing to you but Ive had a miscarriage and lost a child st 16 months whilst I was pregnant with my son Ollie who is now 28 and special needs. He was born a month after the death of my dear daughter Laura, who sadly was part of the Bristol Heart Babies Group in 1993. My son was born at 32 weeks a month early with hydrocephalus (fluid on the brain). A dr at Bristol Children’s Hospital tried to tell me the death of my daughter would not affect the birth of my son – what after my daughter endured a 16 hour op which should have been 6 or 8 and who ended up in ICU for several weeks before eventual her death seems an odd answer to my question ad to whether it would affect his birth?
About 4 years after all this I was diagnosed eith hypothyroidism and Hashimoto’s. It turns out that whilst I was having fertility treatment I was never checked for my thyroid, and even now prospective parents are not given a full thyroid panel (TSH, FT4 and FT3). Unfortunately the NHS will only check TSH (thyroid Stimulating Hormone) which is just a pituitary hormone and only tells the dr how much thyroid hormone is in the blood at the time of the test,a snapshot if you like). Its actually the actual thyroid hormones that should be checked which need to be at certain ranges for those on levothyroxine to feel well. Unfortunately its the same with vitamins such as Vitamin D and B12, the doctor will tell the patient normal when in fact they need to be optimal. The NHS will only allow 3 monthly B12 injections even though most patients need more? Due to the Pandemic some patients had this medication removed and were told to take B12 supplements. Unfortunately for those with Pernicious Anaemia B12 supplements just wont work.
I had a private ultrsound scan which showed I only had 1cm lobes and atrophic thyroiditis. I cannot tolerate levothyrox8ne because I have the DIO1 and DI02 gene which means I dont convert T4 to T3 very easily due to the very small amount of thyroid left so this means I need T3 only. Unfortunately T3 (liothyronine) was very expensive but now it has reduced from £300 to £55 yet it is still banned in most parts of the UK (via CCGs – Clinical Commissioning Groups, now known as ICBs -Integrated Care Boards), yet still this vital medication is being refused to thyroid patients, because they are going by 30 year old info and wont listen to patient symptoms, often mistaking it for menopause,fibromyalgia,depression, anxiety etc etc. They would rather put patients on antidepressants, beta blockers or lithium.
There are many thyroid patients on various thyroid FB sites hsving miscarriages due to thyroid problems which are not being treated before they conceive, its really scandalous and needs urgent attention by the Government because it is being totally ignored.
Yesterday I saw your article in the Daily Mail. You will note there are 117 comments on it already. I and many other thyroid patients are very concerned about some of the comments the consultants have made in your article, which as far as we thyroid patients are concerned are not all correct. I am also concerned that they feel older patients may need less thyroid hormone. even though the Alzheimer’s Society say there is a risk of patients with a thyroid condition getting Dementia. They will get it if their thyroid hormones and vitamins are not optimal?! They mention over treatment, osteoporosis, and atrial fibrillation. They fail to mention that these things can occur with under treatment too. They fail to mention the reason patients do private home finger prick tests is because the NHS will not test the FT3 (the active thyroid hormone). They often wont test Vitamin D either which is all due to cost. In reality they are not saving money because untreated/undertreated patients end up in various hospital outpatient clinics which they would not need if they were treated properly for their thyroid and given the type of medication that suits them best. . Patients would not need to keep visiting their GPs either.
This is something I would love to discuss with you if you have the time. Im sorry for the length of this but wanted to give you some background information. My son is now on NDT (Natural Desiccated Thyroid) so as well as my T3 I also have to pay for his because I get no support from my endocrinologist or GP. They just dont want to know if you have a chronic condition.
There is a FB Group called ITT Improve Thyroid Campaign Group which will give you an idea of the scale of the problem. I have my own Devon Uk Thyroid Sipport Group with 189 unhappy thyroid members. We just feel that a more acurate picture needs to be portrayed of the way thyroid patients are being ‘gas-lighted’ and kept ill due to Big Pharma and GPs insistance that we take their toxic drugs, instead of treating us properly.
Thank you for reading.
Thyroid Patient and Researcher