Guest Blog – By Caroline
Even today, after having our beautiful son, the trauma of infertility remains. It feels a part of me, even when I tell myself it will not define me. It is the voice in my head. My ‘story’ of adversity and triumph. A deep shame, yet a great pride. The light and dark. An old friend that comes knocking on my door once a month.
Reflecting back, I find it hard to believe I had the strength to fight through four years of trying to conceive, multiple rounds of IUI and failed IVF’s. The diagnosis you may ask? There wasn’t one . . . well ‘unexplained,’ whatever that means. You see this diagnosis, for me, felt like a double-edged sword: hope but no hope; aka: torture.
I’m starting to feel selfish as I write these words as I haven’t mentioned my husband and what he went through. Infertility only ever made us closer and I know we’re lucky for that as not all couples survive it. But it was also always a very personal journey for me. The deep-rooted fear of never having a baby was too much for my brain to ever contemplate, never mind say the words out loud to the one person who was hurting as much as me.
Talking of selfish, can you believe I used to be jealous of women who’d had a miscarriage? Hard one to admit. I used to think ‘well at least they can get pregnant, I’d take that.’ Of course, the one and only time I ever was pregnant, the thought of losing my baby terrified me and it certainly wasn’t an envious position.
There are so many layers of self-sabotaging feelings that come from infertility. Shame was a huge one for me: shame of not being able to get pregnant, the shame of not giving my husband a child and the shame of the person it turned me into. I was in a dark place for a long time and was not a nice person to be around.
Prior to our fourth and final round of IVF we changed clinics, agreed a different protocol, new medication and had a completely different mindset. We had a six month break too, during which time I worked on changing the narrative in my head. I told myself it will work this time; I will be a mum and trusted the universe. Our son is our biggest blessing, but I naively believed he would heal us. And as I sit writing this, longing for a second child and sibling for our boy, the old feelings of shame and fear resurface.
Last night for example, whilst the whole street was out clapping for our carers, I was inside crying because my old friend had turned up for her monthly unwanted visit. I then felt very selfish, given we are in a global pandemic, which made me cry even more; then I laughed at how ridiculous I was being. Crazy lady indeed.
Every month I feel stupid to ever believe I can get pregnant naturally but then as the luteal phase comes around (yes, I have all the medical terms down to a tee) I have a glimmer of hope.
Moving forward, I’m not sure if I have the strength in me to triumph once more, knowing the IVF battle ahead.
Good old infertility eh, it never leaves my side.
I want to say a huge thank you to Caroline for sharing her deepest personal emotions relating to her struggle with unexplained fertility, and now secondary infertility. If you’d like to connect with Caroline you can follow her over on – Instagram @Avocado_Fertilty
I recently saw heard someone say “infertility robs us of the long-term view”. Planning anything during fertility struggles becomes near on impossible – I remember I had so much of my life hung up on the loose possibility and desperate hope that I might soon be pregnant. From minor things to major life events – I’d find myself thinking…
Best not buy that dress… in the hope that I might not get much wear out of it as I would soon be needing maternity clothes
Best not book that holiday just yet… not knowing if I’d be in another IVF cycle or hoping that I might be in the early stages of pregnancy
Best not book the wedding yet… we don’t want to be spending ‘unnecessary’ money that might be needed for more treatment or (the more hopeful me) what about my wedding dress if I’m pregnant at the time? (a scenario I was quite happy to face!)
Best not commit to going on the hen weekend… there will be questions about me not drinking / what if it clashes with egg collection?!
Best not go to the social event… there’s bound to be another pregnancy announcement and I don’t feel strong enough to cope.
Best not apply for the new job… I just don’t have the energy / I need the length of service in the hope of company maternity pay / what if I start a new job & need more time off for appointments?
It’s the not knowing that I found so incredibly hard. Being a planner with the only thing certain in my life plan being quite simply “to be a Mum”, I was completely and utterly at a loss of what to do with myself. I wished for a crystal ball to just tell me that one day it would happen, even if it was going to be another 5/10 years – I just wanted some certainty, when in fact the only certainty was that there was none!
Because this lack of control can literally leave us feeling powerless we can easily let life run away without being ‘present’ in it.
I love the phrase “don’t let trying stop you from living” (I believe from the wonderful @mother_pukka) It’s why I love concepts such as @thisisalicerose‘s ‘Life Raft’ with the idea that, rather than be a passenger in life waiting to get back on the train, you can still find enjoyment in other things.
Try not to lose what makes you…YOU and don’t let trying stop you from living.
Love, Becky x
Not all journeys to motherhood are easy. It can be a long, difficult & traumatic path for as many as 1 in 6 couples, with not all struggles ending with a baby. It’s very likely that someone you know is facing infertility, but may be suffering in silence. From those that have been there, here are some useful tips for how you can best support someone…
We don’t expect you to fix it for us, so please try to avoid saying… ⠀⠀
“Just relax”. Relaxing won’t get us pregnant when a medical condition is causing infertility – this comment can imply that it’s our fault for being too stressed.
“Just adopt”. Adoption isn’t an easy alternative, in reality there are so many emotions involved & a difficult process with no guarantees.
“Maybe you should try x, y, z…” with no medical knowledge or experience. Believe me, we’ve probably tried every wacky remedy under the sun. *
“At least you…” A comment often used to try to make us to feel better & see the positives in our situation. With good intention, we know you are trying to lessen our pain but being childless just isn’t comparable to material things.
Avoid comparison to life as a Mum. We know motherhood is hard, but I promise we would much prefer a screaming baby keeping us up at night rather than sleepless nights worrying whether we will ever be a Mum! ⠀⠀
Be sensitive with triggering announcements. Ask how we would prefer to be told about pregnancies / births. Often a text message as a ‘heads up’ is appreciated, as opposed to an unexpected announcement. Rest assured, we are happy for you, however the ache for a child can sometimes mean the sadness of our own situation is overwhelming.
Simply put – just be there, acknowledge our pain & say…”I’m sorry, it is shit. I am here for you. What can I do to support you?”
We might prefer to be left alone, want to talk about it, want a welcome distraction or just need a friendly ear to rant to every now & again. All we may need is for you to be there & stay with us whilst we’re on this rollercoaster journey.
Love, Becky x
Getting pregnant isn’t a skill.
It isn’t a talent that some people are better at than others.
It’s simply the luck of the draw .
YOU are not a failure.
It is not your fault.
It really is just the luck of the draw, meaning some of us have great difficulty in conceiving and may only be able to become parents with some help from science.
Why is it that so many of us feel like we’ve failed when we aren’t able to conceive naturally? Infertility can leave us feeling like a failure as a woman… as a man…even as a human being. I remember feeling so much anger towards my body for not doing what’s seen as the most natural thing in the world – being able to reproduce & pass on my genetics. When all-consumed by infertility sometimes I’d find it hard to recognise that, in most cases, it is out of our control & not our fault for needing help to make a family. It’s why I think we can easily become obsessed with elements we feel we can control – diet, exercise, holistic & complementary therapies, weird & wonderful remedies, old wives’ tales. Following a negative result, it leads us to the ‘what ifs’ – “did I not try hard enough?…what if I’d tried x, y, z?” We can convince ourselves that it’s our fault the IVF cycle didn’t work. I questioned myself all the time, it’s now that I realise it was all out of my control – not being able to reproduce is not my fault. It’s not your fault either.
Since starting DefiningMum, I’ve come to realise that the language we use in talking about infertility can actually make this worse. We often hear fertility struggles described as a “fight” or “battle” – implying that the onus is on us to “win” or “lose”. Then there’s the word I absolutely hate, one that formed part of my diagnosis – “failure”. It crops up so many times… “Premature Ovarian Failure”… “Failed cycle”…you name it, it makes us feel like WE have failed. I actually didn’t pay much attention to the language I used in the beginning when writing – I even called an early blog post “Failure or Fighter”, something I would now describe very differently!
I share this as a reminder – needing help to conceive shouldn’t be something to be ashamed of. You are not lacking any skill or ability – it’s simply shitty luck, something we have to accept and face. Think about the emphasis you put on your own role in your fertility journey & don’t beat yourself up when it comes to things you simply cannot control. Lastly, think about language & try not to fall into the trap of making yourself believe that YOU’VE lost a fight, or you’ve failed. YOU haven’t, you’re simply dealing with an incredibly difficult situation. The way in which you are facing this adversity is something you should be incredibly proud of.
Love, Becky x
The HFEA reports that 1 in 6 couple are affected by fertility issues. This isn’t a negligible figure by any stretch of the imagination. It affects everyone regardless of how much money you have, how popular and beautiful you are, which country you live in or what social circles you move in. It has no boundaries.
I didn’t want to be one of these 1 in 6 statistics; nobody does. But I was; and so was my husband and like the majority of people in our situation we were and still are employed. Since my experience of having fertility treatment, I have spoken to so many people who have very varied experiences of how work handled the situation of them going through treatment. Some were great positive examples, but in the main they were treated quite badly (and this was even if their employer was aware of what they were going through).
For my first cycle of IVF I told nobody in work what I was going through. Not even my closest friends. I chose to sneak around and deal with it on my own and my husband was under strict instructions to do the same.I made that decision; me. I look back now and still wonder what my motivation was for this and I think I was just bloody scared. I consider myself fairly intelligent, but with extensive reading when being told of the procedures and the process I wasn’t prepared mentally or physically for that first round and when it didn’t work I felt the biggest failure in the world. This invariably affected both my confidence and ability at work.
For the second attempt, a few people in work knew, but whispered conversations in rooms occasionally didn’t really count as any comprehensive support and I truly felt I was entirely alone in this journey. At this point my boss still didn’t know. It is only now after the event that I see people around me having the same struggles with IVF and this has been my motivation to make a change. Attempt 2 then failed. My husband, who had continually worked split shifts to support me and to attend appointments and pretty much bent over backwards to ensure his employer wasn’t ‘inconvenienced’ by our infertility decided he too was not going to work for a few weeks. It was his first absence in 12 years.
The majority of people having fertility treatment are employed. This is a fact. Education is the key factor here in changing employers’ mindsets in how to approach and support this growing group of people. This challenge is not going to go away nor is it going to reduce and as time goes by this will be more commonplace so provision must be considered in how to best support. Employers ‘don’t know what they don’t know’. Those myths about infertility need to be eliminated especially where work is concerned which is why there needsto be a clear shift in perception on infertility in the workplace. This is a validreason to support employees. Infertility can often be caused by cancer diagnosis or another illness such as PCOS both of which may well be covered by the equality act yet infertility itself isn’t a protected characteristic even though the W.H.O define it as a disability; ‘ a disease of the reproductive system’.
As an HR professional I have never seen a provision made for fertility treatment and my experience is no exception. Apart from an occasional nod to fertility treatment in the ‘flexible working policy’ where paid time off for treatment is usually ‘discretionary’. This translates to- if you have a good boss you will probably get some support (but ‘undefined’ and ‘unguided’ support) and if you have a bad boss you won’t. There are plenty of articles and support wrapped around about parents returning to work, flexibility, well rounded and carefully written maternity policies outlining your rights and support you will expect to receive from your employer but none really for infertility. Infertility could last well over 20 years which is a significant amount of someone’s working life, yet it is not identified as a work affecting issue or supported with guidance for employers and employees. There needs to be guidance and policies as well as educational training for organisations so they can understand the impact both on their employees and their organisation. Being an ‘employer of choice’ has never been so important so it is vital that organisations recognise the need to have fertility treatment as an emerging trend if they are to attract and retain the best staff.
I have sadly met people who have been dismissed for the time they have taken off for treatment and a whole raft of others who have called in sick with some made up illness for egg collection/ embryo transfer. My advice is to be honest with your employer and work collaboratively with them to identify how you can both work differently to help you attend appointments such as flexible working or moving days off to support. It may be that you ask for a temporary reduction in workload if feasible to support the treatment. It is advisable that you think carefully as to what support you require before this conversation takes place as what works for one person may not necessarily work for another. Make sure you know what Occupational health support is available to you via an E.A.P (Employee assistance programme) or any other route such as counselling as you may need some physical or emotional support along the way. If you feel you are being treated unfairly there will be a complaints/grievance procedure that can be followed but this really is a last resort for both you and the business. Most workplace issues are resolvable, the key is to talk.
If you wish to share your experiences of having fertility treatment whilst working or an an employer who champions this for their employees you can get in touch with me on Instagram: @ivfatwork Twitter: @IVFwork1 or e mail Claire on firstname.lastname@example.org