Think! What not to say!

Don’t say “you can have another one”, “sit on a pillow after sex”, “just relax” or other thoughtless comments to women going through loss or struggling to get pregnant!

A nationwide campaign has been launched today to persuade well-intentioned people, especially healthcare professionals, to take more care in what they say to men and women experiencing infertility and loss.

Here, Alice Rose, the amazing woman behind the campaign gives us an insight in to some of the many misdirected comments she has heard from ‘well meaning’ people.

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 super-grim experience. Therefore, I have to include the wider world in which we walk our rocky, grief-heavy paths.

Let me get to the point. Recently, I asked my Instagram followers 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 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 we have an awareness problem, resulting in a vicious circle thus:
Shame, guilt and a kaleidoscope of other crippling feelings almost impossible to label (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 fam, 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.

Anyone from the receptionist to the consultant needs to know what not to say.

On my website there is a 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: “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 who have forgotten what your patients are going through: please think. And know what not to say. ​
From the people going through it.

JOIN THE CAMPAIGN

• Raise awareness by sharing a selfie with a finger pointing to your head and use the hashtag #thinkwhatnottosay. 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 better!

• Share this web link on social media with your selfie, to help to normalise conversations; encourage people you know to read the comments so more people know what not to say and how to support someone

• 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

• 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 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, family, employers and colleagues also often struggle and unwittingly cause more heartache. I want to encourage more discussion in order to . . .

break the silence and stigma

normalise conversations around infertility, miscarriage and baby loss 

improve relationships between couples, friends, families and colleagues so more people are supported and fewer are hurt

To keep up to date with Alice, check out her website  

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