AIBU to ask if you have experienced infertility or pregnancy loss, what you WISH people would have said to you?

[bananafish81]

If you’ve experienced infertility and / or pregnancy loss, we all know the often-well-intentioned-but-desperately-unhelpful things that people say to you (usual bingo card: just relax, why don’t you just adopt, any sentence starting with ‘at least…’ or ‘have you tried…’, stories about miracle babies etc).

As well as the grossly insensitive things that are just downright hurtful (maybe you just aren’t meant to have children; you can have one of my kids if you want; why don’t you have an affair; you only know true love when you have a child etc)

Most of the comments in the former group usually come from people not knowing what to say - and wanting to try to say something useful, to try and ‘fix’ it.

Instead of unhelpful comments, what WOULD you like friends / family / colleagues / other MN posters to have said to you?

If they had a list of things NOT to say to someone who’s suffering from infertility or pregnancy loss, what would you like them to know about what they SHOULD say instead?

to anyone who's been through this shitty experience, and especially to anyone still struggling

(Full disclosure: longtime poster on MN infertility boards, lots of failed IVF, and I'm currently researching the emotional experience of infertility & pregnancy loss)

After a very late miscarriage at 22 weeks, one of the senior, older men who I worked for occasionally but who I didn’t know very well stopped by my office to say “I just wanted to come by and say I really don’t know what to say”. I thought that was lovely and gutsy. In contrast to another of the senior men who I did work for a lot, who I first heard from by way of his secretary coming in and saying “X wants to know if you would be ok to come to a meeting on Tuesday”, and who never mentioned it.

Generally, the best were people who just said they were so sorry, and who would listen.

bananafish81. Thank you for clarifying how you are intending to use the comments in this thread for your book and blog. Are you working with any charities?

I’ve not suffered infertility but have had friends who have. One friend told everyone how she and her husband wanted to be treated. Including on social media. She included details. It made it really easy for everyone around her to feel comfortable when she wanted to chat about things. I presume and hope this also made it a little easier for her.

What not to say: anything that starts with 'At least...' (this is true for any kind of loss or grief, not just miscarriage/infertility), 'You need to...', 'Have you tried...?', 'Have you considered...?'

Agree that HCPs need to up their game - after my last miscarriage (after 6 years trying and 3 rounds of IVF) I was in recovery from the ERPC and the surgeon said something that made me cry and then said 'Don't cry, you can try again, it's not because of your age'. She clearly hadn't read my notes properly because if we are using IVF then it's not so simple as 'trying again' and I'm over 40 now so yes, it probably is because of my age and I will cry if I want to because what else could I do given the situation?

For me, just a simple acknowledgement of the loss after miscarriage is fine, and for infertility just an acknowledgement that it's horrible and unfair, and for god's sake don't try to give advice to anyone unless you know for a fact they are an idiot. If you've been trying for years and are even moderately intelligent then you will know more about fertility and getting pregnant than 99.9% of people who managed to get pregnant just by having sex (and the 0.1% who know more are usually working in the fertility industry). If someone has been trying for years (and is a non-idiot) then their problems are medical and won't be cured by tracking ovulation or putting their legs in the air after sex or eating pineapple or whatever other thing you are going to suggest.

I feel like infertility has blighted my life for the last 20years and robbed me of not only my children, and future, but of my husband as well. Men aren't supposed to be as devastated by this as we are - but he was, they are. My husband was an only child and so very close to his parents, who are amazing people and he had to cope with comments like "if you don't hurry up and have a baby with Leigh your family line will die out." So fucking cruel.

If I look back at the photos from our wedding nearly 25 years ago I realise that I'm not in contact with most of the friends who came that day. They were friends from Uni, school, college and various sports teams and all but one of them have now got children. As those children grow and start to go to uni etc themselves I find that they are remembering me and reaching out, but it is too little too late. I needed their friendship and support years ago when I was going through IVF and then when my husband died. Not now, when I'm just treated like I'm supposed to be grateful for a few crumbs from their table.

I'm bitter and I'm angry and no counselling or anything else is going to change that because part of the reason I'm angry and bitter is because of how I'm treated and dismissed as a middle aged childless woman.

I have a few good friends, mostly made through work or through volunteering with various sports teams. Some of my friends are parents, some aren't. Some have younger children, some older. We bob along ok together, but I miss having a close friend like I used to (she expected me to be happy and cheerful and positive for her when she had each of her 3 children in between my IVF failures and then didn't bother to contact me after my husband died). I don't think I'll ever be close to another friend again and that makes me sad.

Having been through recurrent miscarriage and then later acquired a disability, I have found that it is much the same in terms of support

1. Best thing people said to me 'thats really shit isn't it'.
2. Worst thing - people trying desperatly to find positive things to say
3. Keeping being supportive - for both, people assumed the pain would go and were surprised I was still upset about the mc or that my disability didn't hurt

Leigh I’m so sorry your life has been blighted in the way you describe. It must be incredibly difficult and i think it’s perfectly ok to say you are bitter rather than try to just put a brave face on it.

weed how incredibly insensitive of your sister. That must have been shattering.

I haven’t experienced infertility myself but have a close friend who has and this thread has really helped to see how best to support her.

to everyone here suffering infertility and loss.

I’m infertile. We transferred our first embryo earlier this summer but it didn’t stick. Our next round isn’t going well.

My cousin recently lost his dog. I have a dog, he’s my world, I get it. But...

I lost not just an embryo, but hope. Hope of having a family. Hope that years of hell would end. Hope for our ‘baby’. And. No one. Said. Anything

They lost a dog. There are literally hundreds of messages of commiserations.

Leigh I’m so very very sorry for everything you’ve been through. It’s so cruel, and so unfair. You have every right to be bitter and angry

Gemme IVF failure is a special kind of hell - my friend astutely described IVF as a ‘very expensive form of self harm’. Keeping everything crossable crossed for this round. Has your clinic offered you access to counselling? It’s an HFEA requirement for all clinics to offer patients access to counselling (although not to provide it FOC as part of a treatment cycle) - however clinics seem to be woefully inadequate at fulfilling this obligation. It’s not for everyone, but all patients should be made aware that it’s available. Good luck

you can have one of my kids if you want

and this OH MY GOODNESS whats wrong with people

Oh god I’ve had so much worse. One friend, when I mentioned how much we’d spent on IVF (which at that point was ‘only’ £25k, try doubling that and still no baby….) said ‘you should have said, I’d have sold you one of my kids for less than that’

FFS

All the wisdom you are offered is useless when you've been through multiple rounds of IVF - often it's dressed up as positive thinking - at least this and at least that - eg at least you got x eggs this time, at least you have one more cycle, at least....It's well intentioned but it just makes you feel worse because it implies you should be positive when you just feel totally rinsed out by the whole experience.

Yes - THIS. I wrote this piece this week on how the tyranny of positivity and why you don’t have to join the cult of positivity when you’re struggling to have a baby. It’s just bollocks!

Thank you for clarifying how you are intending to use the comments in this thread for your book and blog. Are you working with any charities?

Thanks Honest - you sound like a great friend supporting your friend and her husband. I am in discussions with the DCN (Donor Conception Network) and looking to speak to charities like the Fertility Network UK, Tommys and the Miscarriage Association, amongst others - and as well as the National Fertility Society, which provides information and support through a directory of registered fertility counsellors (their CEO was incredibly supportive when I spoke to her earlier in the year).

I’ve been overwhelmed by the response to the questionnaire so far - it’s anonymous, however lots of people have cited MN as a key source of support, so thank you to all the MN-ers who have contributed already!

I would love to hear from anyone who's experienced infertility and / or pregnancy loss - regardless of how their story has played out. My goal is to represent as many different perspectives as possible about people's own experiences of their journey - whether current or past, whether successful or not -the questionnaire is anonymous, [[https://uberbarrens.club/share
more info here]].

The questionnaire includes sections for primary infertility, secondary infertility, donor conception, parenting after infertility, adoption after infertility, as well as reaching the end of the road. And by ‘pregnancy loss’, that includes the full spectrum of experiences - everything from miscarriage, ectopic or molar pregnancies, terminations for medical reasons or stillbirth.

All and any experiences ‘count’ - all and any contributions would be enormously gratefully received.

Thank you so much for sharing your thoughts on this thread - it is so so helpful to be able to gauge different opinions on what people think is helpful - as we have lots of threads about insensitive comments on the infertility boards (latest one here if you want to see some more doozies: Infertility insensitive comments. Anyone got a winner? ), and whenever there’s an AIBU thread that touches on infertility there will be a flood of infertility / miscarriage bingo comments - but what people WOULD prefer instead is going to be very very personal. There’s nothing anyone could have said (who didn’t have experience of being a member of the same shitty club) that would have made me feel any better, but lots of people have said to me since I started to talk about this subject very openly, that they really, truly did not know what to say.

I agree wholeheartedly with PP about only really wanting to speak to other people in the same boat - that’s why various different infertility forums and support networks () have been an absolute lifesaver for me. That’s why I’m trying to write this book - because I felt so very, very alone - and every book I found seemed to be all focused on positivity and how it’d all be worth it when I had my baby in my arms (because every sodding book ended with the obligatory miracle baby). It was only when I found ‘my people’ that I felt less alone - that I realised that other people felt like I did, that I felt acknowledgement that it was really shit, really unfair, and that I was very very scared.

The overriding theme of the responses so far is of how lonely and isolating this journey is: there is a question which asks what different people think a book like this might have made to their experience of infertility and / or pregnancy loss - pretty much every single response has been along the lines of ‘I would have felt less alone’

to everyone’s who’s been a member of this shitty club, and extra to those who are still struggling

Like all the PPs, I've had a lot of jaw-droppingly insensitive comments. However recently I particularly bristle at anything in the 'you'll get there in the end' or 'I just KNOW it will work out for you' department. Spectacularly missing the point. I tend to respond with 'yes, I agree that it's more likely than not that I will, in the end. But that won't erase the pain I've already been through'. I especially resent it coming from women with children who have never been through a loss. It feels like they're saying 'once you have a baby that will be everything fair and square again and none of this will matter'. But how is it fair that they get the prize with none of the heartache? For me the only people I can talk about it with without getting annoyed as those who have been through it themselves.

Thanks Bananafish81 I have followed your story for some time and I'm so sorry that you didn't get your happy ending.

What amazes me is that some parents just don't seem to listen to us or acknowledge that we have worthwhile lives. On those awful threads in AIBU there seems that assumption that it's ok for us to be dumped as friends when it gets too difficult for parents to maintain a friendship with us and that really does happen. Add into the mix a husband inconveniently killing him self and that's a double whammy. Why is it ok to treat us with such contempt? Sometimes I feel that I have no one anymore who I call a friend.

Much love and to you Leigh, I'm so sorry for everything you've been through, please know that you're amongst friends here: whilst we can't possibly imagine the depths of what you've personally experienced, many of us can relate in various different ways to the pain of infertility and the isolation of involuntary childlessness

I completely agree Cat - I wanted to thump people who said my time would come, that I'd get there eventually, not to give up. It's like 'unless you know something my Drs don't, then you can't know that' - and in my particular case, actually reaching a point when we have to acknowledge that we're flogging a dead horse is very different from 'giving up'

I had a friend who went through this. I felt awful for her but I really didn't know what to say.
I thought she would want some time to process on her own. Have some time with her OH and grieve without people pestering her and reminding her (My mind was also preoccupied with my own PTSD, anxiety and depression - sounds selfish I know but my point is my mind was not functioning properly).

This was the wrong thing to do. She really resented me for it. We fell out and never recovered a friendship.

Lesson: saying something is better than saying nothing when someone has had such a horrible and devastating loss.

After my first mc it’s the things people DID rather than said that stuck out for me.
My boss only ever said he was sorry once but he paid for my sick leave (a considerable amount of time due to complications), never once pressured me to come back and when I did return, took it at my pace.
I don’t remember what my best friend said but it wasn’t much. She did come round to my house with flowers and to check I was ok. I remember the lingering hug her husband gave me when he came to collect her too. It was all the words he didn’t say.

After my 2nd mc a good friend said ‘I’m sorry Asterado. I’m so angry for you. You don’t deserve this.’ It meant quite a lot to me. I WAS justified to be angry, furious even and no I DIDNT deserve it.

I think the most helpful was an acknowledgement that it’s so bloody unfair. Why us and so many other people just pop our babies easily?
The worst was - x and y are having a baby- at 12 weeks. No- she’s pregnant, that’s doesn’t mean you get a baby or I would have 2 by now. It came at a bad time and just struck a nerve.
and more to everyone on this thread. I’ve done your survey bananafish .
(My history - 1mc, 1tfmr, 1 ICSI baby and done)

I only had my most helpful comment recently, from a Dr actually, and she simply said 'i'm so sorry'. It was the most honest response I'd had in 6 years. Secondary infertility for us - a second just hasn't happened.

I'm sorry
That's crap
I don't know what to say but I'm here if you want to talk (friends and colleagues who hadn't experienced infertility)
I'm coming round with wine (close friends)

Nothing starting with "at least..." or "have you tried..?'

It’s shit
I know there’s nothing I can say to make it any better.
I’m really sorry you’re going through this.
I don’t know what to say, but I’m here to listen if you want to talk.

Nothing starting with "at least..." or "have you tried..?'

Hear hear.

My “at leasts” to myself were:
“At least it’s not an ectopic” where it ruptures and I then lose my entire circulating volume within a few minutes and die from haemorrhagic shock.

“At least it’s not a miscarriage” where I then lose large chunks of endometrium dramatically and embarrassingly in public.

“At least it’s not a stillbirth” where I then have to give birth to a dead baby.

Those were the “at leasts” I consoled myself with so unless you can give me an “at least” scenario which is worse than those I’m quite frankly not interested. If you can give me a worse case scenario which is worse than that, then I’d rather not hear it as you’re apparently trying to make me feel better not worse.

My history - 1 dd, then 1mc, then 1 ivf after mc, finally feel very fortunate to get my 2nd dd in the end after being told ivf would not work and to 'move on'.

Please no to 'at least's' as many pp have said. Yes to the 'this is crap'. Yes to the 'I went through something similar' and exchanging stories with someone who understands (and exchanging others insensitive comments). No to turning up on my doorstep without warning, however well-meaning, I'll need to psych myself up first. Yes to tea and cake that has been pre-arranged, but please don't try to cheer me up, you really can't, just sympathise briefly and then talk about everyday stuff. Company without pressure.

I am guilty of the 'have you tried' though - only because 'it' worked for me. Of course I realise 'it' won't work for everyone, but what do you have to lose, especially if you've tried everything else...

If anyone starts the 'have you tried' game I WILL win

When I say that the reason I'm infertile is because of my uterine lining, I will invariably get the 'have you tried....' suggestions. Which 9/10 will be 'have you tried acupuncture, it worked for me / my friend / everyone else on the Internet'

Let's see.

Well, given we’ve tried 4 IVF cycles (& 7 cancelled cycles); pre-implantation genetic screening; a wealth of weird, wonderful, painful (and expensive) investigations; thousands and thousands of £££ on medications via every conceivable route of administration (pills, patches, pessaries, suppositories, subcutaneous injections, intramuscular injections, intravenous drips and intrauterine infusions, to be precise); 2 hysteroscopies, plus the opinions of the best fertility specialists on both sides of the Atlantic....

....And specifically for my uterine lining we've tried HRT (oral, vaginal & patches); low doses of hormone injections, high doses of hormone injections; oral Viagra, vaginal Viagra pessaries at £1000 for 7 days (specially commissioned from a compounding pharmacy in Cardiff); uterine washes with a drug used for bone marrow harvesting; blood pressure tablets; blood thinning tablets and injections; tablets used to treat breast cancer; many, many womb biopsies; surgery and even going on contraception (yes, a copper IUD was part of my fertility treatment). In addition to supplements, red raspberry leaf tea, pomegranate juice, red meat & other ‘womb lining friendly food; Mayan abdominal massage & nightly castor oil packs; fertility reflexology and lots of fertility meditation & hypnotherapy - and yes, thousands and thousands of £ on fertility acupuncture.

(Spoiler alert: none of this worked)

So when someone starts to play that game...

Yes I've tried whatever you're going to suggest. I've read every medical paper on every experimental treatment for thin endometrium on PubMed. I could enter Mastermind with uterine lining as my specialist subject

If you have any suggestions over and above that, I'm all ears.

Any sentence that starts with 'at least...', 'why don't you just....' or 'have you tried...' is generally not going to end well, in my experience

I also hated it when I wasn't told about people being pregnant until way after everyone else. Despite what people thought I was thrilled when a friend or family member had a baby. After visiting for the first time I would usually go home and sob my heart out but they never knew and it didn't stop me being happy for them.

Oh Silver this totally resonated

I had a baby bomb yesterday - a childhood friend, who I've known since we were 4, announced the birth of her child on FB. I had no idea at all she was pregnant. Clearly it wasn't being kept a secret, as all the comments said 'congratulations' - nothing whatsoever along the lines of 'wow, I had no idea' (as usually happens if someone has kept it under wraps until baby is safely here)

So clearly everyone else knew

I didn't

She may have done this with the best intentions, but seriously? It wasn't like I wasn't going to find out at some point!

Instead I feel excluded and foolish

I texted her congrats and said what a surprise as she'd never mentioned she was pregnant. Funnily enough her reply ignored that completely

I was so so hurt and upset

If I didn't feel isolated enough, now I feel even more excluded.

Sigh.

I'm so sorry Bananafish81. Thinking of you. It's really, really crap isn't it

What annoyed me most was people needing to dance around the topic and never speak about it directly.
Also, I had 2 healthy children before I had my loss and so many people said 'you are so lucky, you've already got 2 healthy children'
Yes of course that's true but it doesn't change my loss, it doesn't change the fact that that we soul never made it through to meet us. It makes me so sad that there was a piece of us, a part of our family who we will never know.