What not to say to friends facing infertility

It’s the thoughtless, hurtful comments that stay with you.

The bullish relative who tells you that children aren’t all they are cracked up to be when you’re facing another failed round of IVF, or the half-listening friend who suggests you adopt instead – as if that hasn’t already been carefully considered and discussed and rejected by you and your partner. As if it hasn’t even occurred to you.

That’s what Berenice Smith, who has been unable to have children, hopes listeners to her podcast The Full Stop will learn from.

“We are sharing our story in the hope that our friends, family and strangers will listen so the next generation of people who are childless not by choice won’t have to listen to those rather cruel platitudes,” says Berenice, from Cambridge.

“I felt horribly hurt when people said these things to me, like: just relax! Why don’t you adopt? Children aren’t that great anyway.

“I felt isolated and different and angry, upset and judged and pitied. I have been told by someone that they pitied me and I thought, I’m actually really proud of what I went through.

“IVF failed me, not the other way around. I’m proud I managed to do that, and not without a hell of a lot of mental and physical anguish, because it leaves a legacy that changed me from who I was before.

“I have two parts to my life, that before and after.

“I’m proud that I did it and I’m very proud that I managed to create a podcast from it as well as launch my business and study for a master’s degree.

“In the podcast, we unpack it for you so you can go away and learn what not to say and how best to support somebody through this.”

In fact, as Berenice explains, she and her fellow podcasters who have all experienced infertility, are not looking for suggestions or solutions. It’s enough to be able to share their stories and those of their guests. And she heard again and again the type of support that is really useful.

“Please don’t unthinkingly suggest alternatives like adoption. It’s not the same as IVF. It’s a very different path. And those alternatives have been thought of. We have looked at the statistics, we have looked at the paperwork and the protocols for adoption. We already know all of that. What we actually want is someone to say, I’m sorry. It’s just the nicest, loveliest thing to say because it shows you’ve listened and that’s what people need to do: just listen.

“Even just saying to someone, I know you’ve tried. That’s OK too. You could also say, I’m proud of you, I still love you. I know you’ve tried your best.

“There are so many things that people can say that would mean the world. Even though perhaps a bit awkward, it’s appreciated.”

Berenice went through six rounds of IVF and suffered miscarriages before deciding with her husband Kenny that they had reached the end of the line. And it left her facing a future she hadn’t expected or planned for.

“My husband said to me, I can’t watch you go through that again. I can’t watch you fall apart like that. And that almost broke us.

“It put a huge amount of pressure on our relationship before I could to move past that point,” says Berenice.

Grief is not linear, so occasionally it just hurts me in the most unexpected ways.

“I wanted to carry on because I had got pregnant and had a miscarriage. But the clinic said we think your chances next time are very low. That was very hard to hear. And then you have to look for the support for what comes next and I found that there was nothing. Absolutely nothing.”

During this period, Berenice decided to take a master’s degree in graphic design and typography. She also set up her graphic design company and she joined online groups for people who were also involuntarily childless. Through those groups she met her podcast partners Sarah Lawrence and Michael Hughes, who have also experienced being childless-not-by-choice.

Their podcast, The Full Stop, has been running for almost two years and has covered subjects such as grief, ageing without children, being childless during the pandemic, men’s experiences of infertility, and mental health.

Berenice says: “There are still days, even now eight years since I went through the whole conception and miscarriage, where there will be a trigger. I will just be walking somewhere and I will think, ‘Oh that’s not going to happen any more’. And suddenly it just hit me like a freight train.

“Grief is not linear, so occasionally it just hurts me in the most unexpected ways.

“Six months ago I was in the car and it was a bright, sunny day and I realised I used to drive to the IVF clinic on days like this on that same road and it just got to me. I had to pull the car over to the side of the road.”

Another problem is that although IVF clinics may offer counselling after fertility treatment has failed, it is often held at the clinic, which can bring up sad memories.

“There’s that whole thing about going back somewhere like that,” she says.

“And at the time when we went through (the end of treatment) we actually had one embryo left in frozen storage and I didn’t think I could go back into that building knowing that there might be another hope of something there.”

Over the past few years, Berenice says there have been some positives to come out of her experiences, namely her close friendships with the people she has met on her journey and the creation of the podcast, which has brought her into contact with a wider community of people going through the same problems.

“Now she wants to start challenging expectations about women.

“I have good days and bad days now,” she says. “These experiences have changed who we are, it changes conversations at work and socially. The podcast has been so incredibly important to my recovery.

“I hope people do listen and they change those assumptions that they make about women.

“One in five women reach age 45 without being a mother and that’s a hell of a lot of people.”

The Full Stop podcast is available on Apple and Android platforms.