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)

We lost a baby early on.
There where a few awkward moments but I really didnt care, i just appreciated knowing people cared.

The was one thing a midwife said though that shocked me.
They had just confirmed the miscarriage etc and discussed what would happen next and she said.
" was it planned? Because this is your most fertile period so the sooner you start trying the better."
I still felt so raw I hadn't even though about trying again etc. I was still grieving the child we lost.
But again I am sure she meant it with the best intentions. It was just unexpected

MIL: But all my friends have got grandchildren, I'm the only one who hasn't, it's not fair

That was before we moved to IVF, and unsurprisingly we didn't tell her that - she thinks I'm too career minded to want kids, I'm just the evil DIL

In the EPU was actually the worst - heartbeat confirmed stopped, the nurse who was supposed to take me through my options to manage the miscarriage actually said to me that it's ok, you're young enough to try again. Not that simple when you're self funded IVF. Well ok, you can always adopt. WTF! The woman is a trained HCP.

DM when I texted her to tell her I'd lost the baby: a simple I'm so sorry, then the next day can I pop round, and she turned up with a M&S meal deal for two for me and DH and a lovely bunch of flowers.

Really, all you need when you tell someone is for them to say talk if you want, if you'd rather we can talk about something else, but I'm hear when you're ready. Yes, I'm thinking of you BFF

My best friends turned up and without asking filled our fridge with home cooked dinners to reheat, and took our daughter out so we had some time to ourselves. (They didn't ask if we wanted them to, it was more " we'd really like to take out if that's ok). They also all said here if you need to talk etc.. but it was the practical stuff that they did without being asked that helped most in the immediate time afterwards. I think even just saying can I come and see you and bring cake but I'm struggling to know what to say to you, sorry. Is fine.

So sorry Sassy, please be kind to yourselves

I def agree that there is no 'right' thing to say as we are all very different - and tbh the same thing on different days, depending on what else has been going on, and how I'm feeling, can elicit very different reactions!

My own personal preferences are very similar to what many of you have said - acknowledgement that it's really shit; that they may not be able to understand what I'm going through (def preferable than trying to suggest you can relate to multiple IVF failures because it took you a whole 6 months to get pg) but they're here for me - and tbh I think 'how can I best support you?' is great because it means you can let them know whether you want to be distracted / talk about it / not talk about it etc

I actually found it much more refreshing if someone said 'I'm so sorry, I don't know what to say' rather than trying to suggest how I might fix the problem

If you haven't ever mentioned about your situation, then it absolutely isn't appropriate for anyone to be saying anything, I agree!

I have been very open about our infertility issues, because it's enabled me to say to friends quite openly if I'm feeling too fragile to come to a BBQ where everyone will be there with their kids and we're the lonely barrens in the corner.

Very often on AIBU there will be threads where a poster is frustrated that a friend who's suffering from infertility has distanced themself from her / isn't showing sufficient interest in their child. Which then elicits the debate around how it's not acceptable for infertile people to get a 'free pass' to behave this way, that she's a bad friend etc etc (you know the ones)

If you have experienced long term infertility, how did / do you want your friends with kids to acknowledge your situation and support you?

Would you prefer this wasn't acknowledged at all - eg invited to christenings or baby showers, pregnancy announcements etc the same way as anyone else? Would you prefer to be invited, but for them to acknowledge that they appreciate this may be difficult for you, and would understand if you didn't feel up to attending (for example)

I realise this is going to vary enormously from person to person! But it would be great to understand the different perspectives on navigating friendships over the longer term when they have kids and you're struggling...

There isn't much anyone can say really but, "I'm so sorry", sounds OK. Plus avoiding all the insensitive remarks that you have mentioned, and more. Other than that, to carry on as normal because, let's face it, you have to.

And thank you all so much for sharing your thoughts and POV - it's really interesting and useful, and very much appreciated

Hiwever I'm truly sorry you have all had experience of these issues to be able to contribute to this thread in the first place

Miketv’s response was good. Mostly, I want people to avoid the usual list of upsetting stuff. And a lot of HCPs need to revisit their sensitivity training.

I would have loved for someone to say ‘it happened to me too’. My mum had 3 miscarriages but died before I got pregnant. I’d give anything to be able to talk to her about it.

I don’t want to be excluded from baby related events but i would like to be told remotely (by text, email, written invitation) so I can get my game face on. And I would like people to understand if I declined or left early and just appreciate I made the effort. My friends have done that and I really appreciate them for it.

They ask me how i am with a very sad face at moments when I’m fine, totally brings me down!

If you have experienced long term infertility, how did / do you want your friends with kids to acknowledge your situation and support you?

Would you prefer this wasn't acknowledged at all - eg invited to christenings or baby showers, pregnancy announcements etc the same way as anyone else? Would you prefer to be invited, but for them to acknowledge that they appreciate this may be difficult for you, and would understand if you didn't feel up to attending (for example)

I would have hated to have been left off the invitation list for any of the above. Attending was always a monumental effort, but DH and i did it because we wanted to appear normal and happy and happy for the family. Nothing much anyone could have done to make it any easier for us.

Oh, except one thing actually ... don't do big surprise pregnancy announcements at whole family gatherings when everyone knows full well your brother and SIL have just lost a child. And then pass the scan pictures round. And then all look sympathetically over saying 'aw, you two OK?' Here's a hint: no, they wont be bloody ok!

One nice thing was the colleague who didn't know me all that well, but who knew we'd been through secondary infertility, telling me she was pregnant slightly before anyone else so that I was prepared when the 'big announcement' came.

Something along the lines of 'I'm so sorry to hear that, it must be tough' is the best sort of response.

Not so nice, the friend who mentioned adoption as though it was something we'd never have thought of ourselves, forcing me to justify our reasons for not wanting to go the adoption route.

OP, can you tell us about how you will be using these comments. Will they be in your book verbatim or not. I'm not sure your disclaimer in your OP was clear enough.

Apologies, Honest, you are completely correct, I should have clarified. Nothing at all would be used verbatim, I'm trying to understand perspectives and gauge different opinions to be able to represent different POV more generally. Absolutely nothing would be quoted directly - the only material that would ever be quoted is that which has been contributed directly via a questionnaire where specific permission has been granted via opt-in. I should have been much clearer and for that I apologise.

I very much appreciate people's input, and I really hope that wherever you are in your journey, that you are well supported

"It will be your turn soon" said to me whilst enduring a meal with my pregnant SIL who announced her bloomingness 2 days after I miscarried. Everyone knew I'd been pregnant and had miscarried and that was the only comment made. It is 9 years on now and I still want to cry when I think of that moment.

I think: "I am so sorry for your loss" is quite sufficient.

Avoid:

"Well at least you know you can get pregnant", "perhaps it just wasn't meant to be", "maybe it was for the best" and "you can try again". All humdingers I heard that were very very unhelpful!

Another one along the lines of Tabby above..... that’s shit-I’m on my way with cake..... nothing actually makes it easier, but there are plenty of things that make it harder. I think sometimes people just don’t realise what they are saying/doing. I had two friends who I found it really hard to deal with, both of whom fell pregnant easily, one who phoned me to tell me her excited news.... I was miscarrying at the time and it very nearly broke me.... she knew we were struggling- but just didn’t think about how I might feel. And another who rang me lots to complain about how her second child was causing problems...... I’d have dearly loved her lack of sleep for that reason..... and I found that incredibly hard.

One thing did upset me quite a lot. My best friend didn't ask me to be godmother to her son "because you've got enough stuff to deal with". It would have been kinder to say I would love you to be godmother but if it's too difficult for you I totally understand.

My brother said to me, after my miscarriage number 2 ... come to my house for the weekend, let's drink wine and eat nice cheeses because soon you won't be able to

It helped me!

Worst thing was when my best friends family didn't even tell me she'd gone into labour and had her baby because I was going through a difficult time getting pregnant ... so did she to be honest, anyway I had my first baby when hers was less than 1 so it was fine, I just hated people leaving me out 'in case it hurt my feelings' .... no, I was thrilled for her'

Secondary infertility - well think how lucky you are already. I know I’m lucky (and even more incredibly lucky now to be pregnant with #2 finally) and I know it’s not the same as someone who can’t get pregnant at all but it’s bloody hard.

After this experience I am so careful about how I share our news. A friend announced (despite knowing about our struggles) that she was pregnant while out to lunch with our partners - if I hadn’t been newly pregnant myself it would have been very difficult to cope with. Why do people think it’s ok to do that?!

Best comment “ I’m so sorry it’s so fucking unfair - more wine?”

Worst comment (secondary infertility, ptsd from awful birth and first few weeks) “ at least you have one”/ friend rocking up to my birthday clearly pregnant with second, didn’t think to mention it/ others, I wanted to tell you face to face (just text so I can sob in private)

I would have appreciated people just letting me feel what I felt - sad, angry, grieving - for as long as I needed to and not setting a time limit based on when they thought I should just get over it and count my blessings.

Also people saying, “well you’ve got one” really got me. My response “choose which one of your two kids you love or want the most!!!”

The worst thing that happened to me was after telling my sister I couldn’t have anymore children, she gave me and my husband a present on Christmas Day, made us stand up together in front of a room full of family and open it... it was a scan picture for her third child. I have never felt such a crushing pain in my life.
She then complained to my parents about how I had t acted excited enough and did t understand how much the baby meant to her...

I did understand..I love that baby, my niece, so much but to be told in that way at that time was just brutal.

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.

Also I think when you're in the midst of IVF you just think about it all the time so afterward you don't want to analyse what went wrong but just grieve what feels like another failure, another missed chance. I found that, like many other posters, all I needed was someone to say 'that is utterly utterly shit and I am so sorry'. And to hug me. That was all.

@weedinosaurus. It sucks utterly that you would have a sibling who would not understand that that is not a gift for you..... your heart must have been breaking. Hugs.

Mine is more about what i dont want people to say like "you still have time", "it isnt meant to be" "whats meant to be will be" (this one makes me swear), "it will happen when the times right"

I think if people just openly say "im sorry theres really nothing i can say to help, its not a situation that can be 'helped' but if there is anything i can do or you want to talk please know im here"

Its an awful situation, I had 3 MC last year and am currenly 6 months successfully pregnant with my first baby and people assume all is forgotten but honestly its something that never leaves you!!

I understand people who have had no complications/issues will not understand the impact of there words but i still hear some peoples words ringing in my ear... even when i told people about this pregnancy it hurt when they said "see its your time" ... I adore this unborn baby and am of course over the moon but being successfully pregnant doesn't automatically erase the pain of loosing my 3 angel babies!!

Lastly i think although again if you have never had issues it seems harmless but i think the social pressure of couples being asked "when will you try", "thought you would of had a baby by now", "your clocks ticking" and comments like that .... people need to stop and think there might be a reason that person hasnt had a child yet that isnt just the fact he/she doesnt want one!!

you can have one of my kids if you want and this OH MY GOODNESS whats wrong with people

@lifecouldbeadream thank you xx it utterly sucks. There’s so much more but that’s all for a different thread.

The loveliest thing anyone ever said, which was so comforting and has stayed with me over the years was, 'It takes time, so let it', written by a friend of a friend after I lost my first IVF pregnancy. She knew, she'd miscarried. And it was as though she was giving me permission to grieve. I didn;t know at the time that DH was Aspergic and that's why he appeared to have no sympathy or emotion about our loss. I was having a horrendous time with him marching me off to do ordinary every day tasks when I was bleeding like hell and wanted to hide. Her card meant the world to me then.