THINK! WHAT NOT TO SAY: TO FERTILITY PATIENTS

 

I launched my campaign in October 2018 with a blog (below), podcast and this (58 second, hilarious - obvs - video):

 

I wanted to shine a light on an issue that, as I see it, would be easily extinguished if we just ...well, talked about it more. The video has been viewed about 30k times, although it's very hard to keep track across all the social media channels (ideas on a postcard on how to manage this!).

 

As a result of this campaign, I was asked to speak at the wonderful IVF Babble Pineapple Ball at the Science Museum in London  ('sharing' the stage with Sophie Ellis Bextor!), in order to give the patient's perspective to a room full of approximately 300 medical and fertility professionals (and if you read the blog, you'll find out why they are often the worst culprits!). 

 

 

 

 

 

 

 

 

I've spoken on LBC Radio, local BBC stations, consulted for a global pharmaceutical company on how they can help to better understand patient support and am continuing to push for a new approach to how the wider world responds to infertility.

I am motivated by conviction that change is necessary, achievable and well overdue. It's time we simply told the world that it's not OK to say certain things to people going through one of the most difficult and most misunderstood experiences in the world. 

I can't speak for everyone - of course I can't. But I can do my very best to represent the many hundreds of people who messaged and emailed me, to let me know what they've been through and how comments made them feel. I can do my best to empower people going through fertility problems or loss, and I can keep doing my best to explain, with grace and without anger, that we all must educate ourselves further, so that we can make this world kinder, safer and just a tiny bit easier for both those going through it and those trying to support them, treat them or work with them.

Communication is all it takes. Don't be offended if someone asks you not to say something again - just try to listen and understand. Ideally, don't say it in the first place! Just learn what you can say instead -  there's a blog about that here and the podcast covers it as well. Due to privacy, I can't share screengrabs of the #twnts posts that people have made on social media, but there are hundreds.

Here's my original Instagram campaign launch:

 

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THINK! WHAT NOT TO SAY : THE ORIGINAL BLOG

The first thing to say is that I am no angel. I’ve dropped some right clangers in my time and the last thing I want is to cultivate a 'holier than thou' vibe around fertility.

However, I support people who are trying to conceive and part of doing that is to highlight issues that compound this experience, so I have to include the wider world in which we walk our rocky, grief-heavy paths.

I asked Instagram to tell me the most upsetting thing someone had said to them while trying to get that elusive bun in the oven. I was gobsmacked by the amount of response within seconds.

 “I always think when a baby dies there must have been something wrong with it”

“at least you miscarried early on”

“want to hang out with my kids? They will make you change your mind!”

“why don’t you just adopt?”

“you seem really stressed, I think you just need to relax”

“I feel like you’re being very negative. If you believe you will bring home a baby, then you will”

Shockingly many comments came from professionals in patient facing roles (consultants, nurses, receptionists etc.).

Listen, I get it. Misdirected comments from friends or family are often understandable. They haven’t been through it and (as most humans are fundamentally decent), they try and help. So, they rack their brains and say: ‘have you tried sticking a pillow under your bum after sex?’.

(On a side note: this, erm, suggestion, implies they are having sex ‘wrong’. It also implicitly suggests it is all their fault…because they haven’t put a pillow under their butt - even though they probably have, or they've been busy working through the other 3 million ‘tips’ they’ve read online.)

But if your job involves dealing with patients every day then I really just think that...well... to put it frankly: you should know better.

A fertility consultant should know not to say, “you seem very traumatised this time, but you must have known it wasn’t unexpected” after a patient’s fourth miscarriage. They should know not to dehumanise the woman’s loss by saying: “pop it in a dry pot in the fridge”.

Doc - we get you need to communicate this stuff. But can't you see your language is soul-crushingly thoughtless?

Where are the infallible protocols which prevent a GP receptionist ringing a woman to check-in because they’re 17 weeks pregnant, when that Mum lost her baby at 10 weeks?

Why do we have to call an operation after a miscarriage: ‘evacuation of retained products of conception’? If we really have to call it that, must we refer to the life the parents are mourning as ‘product’ in front of them?

Why can’t respect, compassion and empathy be higher priority for those working in patient facing roles?

My theory is that because of a massive awareness problem we have created a vicious circle thus:

Shame, guilt and a kaleidoscope of other crippling feelings almost impossible to label (but here's a quick attempt- failure; devastation; the full grief spectrum on repeat) consume people trying to have a baby. As a method of self-preservation, they close down communication, because insensitive comments create even more isolation.

So, people don’t talk about it.

Of course, when we don’t talk about things, nothing actually changes! People – including the professionals in the fertility world - keep saying the wrong thing or nothing at all because they haven’t got a clue what their words are doing.

I really hope that for friends and family, this rule of thumb could help:

Just. Be. There.

Don’t offer advice if you haven’t been through it. Don’t trivialise grief after miscarriage by saying: ‘you can have another one’. Don't say, ‘why don’t you just adopt?’ if someone can’t get pregnant. Don’t tell stories of people you know who had success because they went on holiday and stopped trying.

Don’t say ‘relax’. Please. Please don’t do that. Don’t ask if they are sure they want kids because they’ll “never sleep again”. As one person said: “we long to be losing sleep because of kids, not losing sleep wishing for them”.

In the meantime, there should be safe spaces within the walls of fertility clinics, hospitals and GP surgeries where patients know they will not have to deal with insensitivity or ignorance and anyone from the receptionist to the consultant needs to know what not to say.

Below this blog there is a long list of comments…perhaps you can make sure your colleagues know about it if you’re in the healthcare field. Maybe you can print it out and stick it up next to the kettle in the clinic, underlining in red felt tip: “think! what not to say"!

This is not meant to be a divisive campaign. The people working in this field are extraordinary people doing life changing work. But if you are one of them, and you suspect that you might have forgotten what your patients are going through: please think. And know what not to say. ​

From, the people going through it X

What To Say 

Everyone is different and these are just comments and things which I personally found helpful when going through our 11 rounds of treatment - or that I know people have said helped them when experiencing loss. Rule of thumb: don't advise, just be there

"I'm sorry. This is rubbish. Are you OK?"  

"I'm here for you if you want me and if not, I'm here when you're ready."

"I'm so sorry for your loss. Do you want to talk about it?"

If they do want to talk, ask them how they are feeling. Offer to go with them for an appointment if they need support. Offer to go for a walk. Offer to be there if they want to call you in the middle of the night. 

Send a thoughtful card or gift if talking is difficult. Pineapples and rainbows (for miscarriage and loss particularly) are all meaningful symbols.

If you're aware of a friend's fertility struggle, consider letting them know by text if you are announcing a pregnancy; this gives them the chance to process their own grief first and lets them know you care.

A friend once messaged me after a mutual friend announced a pregnancy to check I was OK - this was so thoughtful and made me feel supported and cared for. 

What Not To Say: For Professionals working in Patient Facing Roles

“...they all imply I am to blame, whether through effort, a shitty body, or an inability to wish hard enough.

They trivialise grief and make me feel like I’m not entitled to feel the way I feel...”

This list is really long but that's the point. This is just a fraction of the comments that have been made. We HAVE to change this. Please do scroll through it. Please share it. Let's make things better.

 

From a consultant “it’s really common, 1 in 4 pregnancies end in miscarriage…there was probably something wrong with it, we tried our best to get you pregnant”

 

From a GP after baby loss at 30 weeks “don’t worry, you’re young you can have another baby”. Also: “told by a pharmacist I wasn’t entitled to use my NHS exemption card”

 

From the GP receptionist “‘but you’re not pregnant anymore’…. when I tried to schedule a follow up appointment after miscarrying my first pregnancy, 2.5 years in the making”

 

From a nurse at the hospital “‘is there any chance you are pregnant?’…I was there for my ERPC (‘evacuation of retained products of conception’) operation”

 

From a receptionist at the hospital “after our Missed miscarriage I called to cancel our 12- week scan and the lady at the hospital said, ‘look forward to hearing from you in a month or 2 with your next pregnancy!’. This one took us 3 years, thousands of pounds, operations and tests…”

 

Overheard in a hospital: “a patient was at the hospital due to a miscarriage and the receptionist asked her if it was a surprise?!”

 

From a nurse “after 5 rounds of IVF, ‘you must be disappointed it’s not twins!’”

 

From a consultant “you seem very traumatised this time, but you must have realised it wasn’t unexpected...if it happens naturally just put it in a dry pot and pop in in the fridge…”

 

From a GP receptionist “when the surgery calls to check in because you’re 17 weeks pregnant – um, no, my baby died at 10…”

 

From a GP: “we’ve seen great results from just relaxing”

 

From a GP receptionist “I tried to schedule a follow up appointment after miscarrying my first pregnancy 2.5 years in the making and they said: but you’re not pregnant anymore”

From a consultant when asked if there was anything they could do to help an IVF round be successful, "you could get in a time machine and start trying for babies 10 years ago" 

From a consultant "you're really young, just go away and have more sex, why are you worrying about this now?"

From a medical director: "clearly there is something wrong...your ovaries are going to shut down soon...I feel sorry for you"

What Not to Say for Friends and Family

Miscarriage and Baby Loss

 

 “at least you miscarried early on”

“it must have been easier because it was pre-12 weeks”

“at least you can get pregnant”

 “we told family we’d just had a missed miscarriage after IVF, and that we weren’t ready to talk about it or see anybody, they said: so sorry to hear that, shall we go carol singing on Sunday?”

“it wasn’t really a baby though was it”

“come on now, a few weeks is quite enough you need to come and meet my new-born”

“after our second IVF loss: ‘I feel like you’re being very negative – if you just believe you’ll bring home a baby, you will”

“after our third IVF loss: I’m sorry your body is unable to sustain a healthy pregnancy”

“deafening silence after we had to check whether or not our ectopic hadn’t given me cancer”

“After my missed miscarriage, ‘don’t be silly, move on’ after getting tearful a few weeks later.”

 “after our missed miscarriage I called to cancel our 12 weeks scan and the lady at the hospital said, “look forward to hearing from you in a month or 2 with your next pregnancy!...this one took us 3 years, thousands of pounds, ops and tests…”

“can always have another one”

“I don’t know why you keep having miscarriages, neither me or your mum ever had one”

“are you trying again? One week after miscarriage!”

“a friend of a friend had a miscarriage and now she has 15 children…”

 “well you seem fine” after a miscarriage

“you don’t sound like you’re on your deathbed” after a miscarriage

“telling me how many miscarriages their Great Aunt Mary had…thanks love but I’m barely dealing with my own miscarriage I don’t need to worry about having another 8!!!”

“after our 6th miscarriage trying for a second child: at least you have one…”

“at least you didn’t get to hear the heartbeat before you lost it…that would have made it so much harder”

“a few months after my miscarriage we had a weekend away with a group of friends. Only 1 knew. I wanted to tell the others as I felt like I was in a safe place…she told me not to as it would ruin the weekend for everyone!”

“after third miscarriage…you’ve been through the wars haven’t you!”

 

“after a miscarriage: don’t say anything that starts with ‘at least’. Don’t compare that loss to anyone you know anyone else has experienced: pregnancy loss is as individual as the individual. In fact, don’t say anything other than: ‘I’m so incredibly sorry for your loss’ followed by ‘I’m here whenever for whatever you need – if you need space, I’ll back off but I’ll keep checking in to see how you are feeling – if you need to talk through the intricate details of your baby and this loss, I’m listening – if you need to scream and cry at someone at 3am, I’m by the phone – if you just need someone to sit beside you, hold your hand and be quiet with your grief: I’m there. And then DO the supportive things you said you would. Follow through on your kind words with thoughtful, sensitive actions.”

 

 

IVF and Struggling to Conceive

 

“my friend had IVF and it worked first time!”

“I know someone who did IVF for years and fell pregnant naturally”

“have you tried being positive…I think you’re not positive and that’s why it’s not working”

“I think all the medication they’re giving you isn’t helping, that’s why it’s not working”

“just relax and it will happen”

“I know what you’re going through, I tried for 3 months to have a baby and was devastated the months it didn’t work”

“it’s just in your head”

 “try not to think about it too much”

“it will happen when it’s supposed to”

“it took me a year to get pregnant naturally, so your two failed IVF rounds are still within that year”

“have you tried – insert names of whacky obscure concoctions of supplements – my friend took it for 2 and a half minutes and she swears by it!”

“are you sure you want to go through IVF, my daughter kept me up all night!”

“I hope my third baby isn’t another boy”

“just relax and it will happen, you’re quite stressed out from it all- that’s why it’s not working. Are you having sex? Try having more sex or adopt! You’ve got so much love to give”

“I don’t know why you’re upset, you CAN get pregnant, just not with him…do you ever regret marrying him…”

“have you tried not trying?”

“why don’t you start the adoption process at the same time as IVF, odds are one will work out”

“why don’t you get a dog?”

“I feel like I just want to slap you to make you realise that you’re so lucky to already have your two kids and just be happy with what you’ve got”

“have you thought about sitting on a pillow after sex, it worked for us the month we did it”

“why don’t you adopt?” (instead you could say “what are your thoughts on adoption?”)

“have you really had sex every month?”

“why haven’t you made your mum a grandma yet? My daughter has”

“you are putting too much pressure on yourself”

“these hormones are prepping you for pregnancy because that’s how you feel”

“OMG everyone is pregnant at the moment. Everyone is so fertile.”

“what’s wrong with you?”

“do you want kids? Don’t you want kids?”

“you’d better hurry up, time’s ticking”

“maybe it’s a boy thing…”

“it’s probably for the best”

“my friend went on holiday and stopped trying and then it happened”

“have you tried ovulation kits”

“you know you’re only fertile for a few days, are you counting properly?”

“are you really trying hard enough – we don’t know anyone who has had problems, so why should you?”

“are you sure you’re having sex right?”

“just take a vacation”

“when are you going to get on with having a baby?”

“you just need to realise that everyone has problems in life”

“just think how quiet life will be if you don’t have one, you lucky things”

“it’s not God’s timing”

“every time I got a cat/drank coffee/ did xyz I got pregnant, have you tried that?”

“it’ll happen…I just know it…”

 “are you sure you want to do this by yourself? You’re crazy, raising kids is so hard”

“when considering adoption, a close friend said – but it won’t actually be your kid”

“such and such are having a baby…they’re not married long. They are putting you to shame!”

“don’t leave it too long or the age gap will be too big”

“you can always borrow our children…”

 “I suppose you need to be a parent to understand”

“a friend always struggles with childcare and I offer to help, but she always finds an excuse – I know it’s because I don’t have my own child, so I am obviously unable to keep any other child safe”

“stand on your head after sex”

“some people are just not that fertile”

“you’ll probably fall pregnant naturally next time now you’ve just relaxed…”

“I’ve heard that IVF can make you ‘uninfertile’”

“after 5 rounds of IVF, ‘you must be disappointed it’s not twins!”

 “I was called an ice queen and told not to scare the baby because I didn’t have children at the grand old age of 31”

“it doesn’t always work the first time…when confiding that we might transfer an embryo”

“I’ve heard weight loss can help….um thanks. #doublewhammy”

“my younger brother told me they had decided to start trying to conceive as they didn’t want to end up in our shitty situation…he rang the day before our embryo transfer to tell me I was going to be an aunty – he ruined our entire day”

“you’re still a baby, there’s no rush…I was 24”

 

Sayings Not To Say!

 

“what’s for us won’t go by us”

“everything happens for a reason”

“it will happen when it’s meant to”

“you’re young, you have time, it will happen when it’s meant to”

 

Don’t Be Silent!

 

  “sometimes it’s sometimes what people don’t say…after our ectopic there were initial sorry for your loss messages but then: absolute silence!”

“the worst is when people who know, say nothing”

 

 #twnts

JOIN THE CAMPAIGN

Firstly: I know not everyone is comfortable sharing anything publicly; but for those who can, please share for those who can't.

  • Raise awareness by sharing a selfie with a finger pointing to your head and use the hashtag #twnts. This is to remind people to think  before saying something hurtful. You don’t need to have experienced fertility issues yourself; this is about raising awareness. Anyone can join this campaign: the more the merrier!

  • Share this article/video/podcast on social media; use #twnts and add your own experience if you want to

  • Listen to the podcast; share, rate and review if you listen on Apple

  • If you have experienced insensitive comments, write to your clinic/hospital or surgery and explain what was said and how it made you feel. Ask for the letter to be shared within the clinic. You can also add your comments underneath the video on Instagram 

  • If you are a professional in the field, tell your colleagues about this campaign, print the list of comments and stick it next to the kettle in the clinic!!

CAMPAIGN AIMS

I would love to see more training for professionals dealing with patients experiencing infertility or loss to:

 

  • implement protocols for receptionists/pharmacists and administrators so mistaken calls regarding pregnancy appointments to parents grieving lost babies are not made; public altercations over maternity exemption certificates after baby loss do not happen; proper support is offered, and discretion practiced

  • improve language used in appointments

  • increase awareness around this issue

  • put compassion and empathy at higher priority

 

Outside the healthcare environment, friends and family as well as employers and colleagues also often struggle to know what to say and unknowingly cause more heartache and loneliness for the people going through it. I would love to do what I can to help everyone to understand how their comments can be read and encourage more discussion in order to:

  • break the silence and stigma

  • normalise conversations around infertility, miscarriage and baby loss

  • Improve relationships between couples, friends and families so more people are supported and fewer are hurt

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