Online fertility forums have built communities and safe spaces where people can share knowledge and advice, but they can also spread hearsay and inaccurate information
For fertility forums
Within the safe space of an online forum, the wall of silence that often surrounds fertility issues can be dismantled.
The crucial support from other women and men experiencing an emotionally and physically challenging fertility journey is an antidote to isolation, says Justine Bold, senior lecturer in nutritional therapy at the University of Worcester.
Having researched infertility’s psycho-social impacts, coping mechanisms and improving patient experience, Ms Bold points out: “Peer support is really important because the impact of infertility can be difficult to understand for those who have not experienced it.
“The process of assisted conception itself is very complex and those with no experience of it may not understand it or the implications.”
Significantly, the anonymous nature of an online forum can enable deeply intimate feelings to be expressed, in a way that most feel uncomfortable sharing with even close friends or family.
Gareth Down, founder of male-only Facebook group Men’s Fertility Support, says when he first launched the forum in 2015 with the aim of getting men talking to each other, he had no idea how extensive its impact would be.
“We have members from as far afield as the United States, Australia and Africa,” he says. “I get regular messages from members who tell me they get a lot out of it even if they are ‘silent’ and don’t post. Being behind the keyboard helps a lot of people.”
The forum really held me together; writing things down helps to relieve the pressure and being anonymous is really valuable
The meeting of anonymity and support makes an online forum indispensable
The sheer scale of some online forums – Fertile Thoughts has almost 98,000 members – means there is a breadth of threads covering a panoply of experiences, from single people and same-sex couples, to those going through secondary infertility or multiple miscarriages.
Natalie Silverman, who hosts the Fertility Podcast, highlights the rise of Instagram as an “amazing” fertility forum, as it enables a very visual way of documenting stories and information, helping challenge taboos and the traditional negative narrative.
“But as a user you can still be anonymous, which can be important for those from some communities where fertility issues are still a stigma,” she says.
Some fertility forums offer access to medical professionals and counsellors like Tracey Sainsbury who is a volunteer on Fertility Network UK’s online forum.
While online forums can provide “a sense of purpose at a time when people can feel helpless”, Ms Sainsbury says sharing information about treatments promotes discussion which could prompt policy changes.
For Debbie, who wishes to remain anonymous, being part of the MadeForMums online forum has been a lifeline. “The forum really held me together; writing things down helps to relieve the pressure and being anonymous is really valuable,” she says.
“I had anxiety treatment which was a group session and I just sat at the back in silence. Having had support online myself, I will continue to give that back. I don’t want to tell people pregnancy will happen, it’s just about being able to give them support.”
Against fertility forums
In an ideal world, all online forums would be a democratic place for sharing information and giving valuable emotional support to others. Unfortunately, this isn’t always the case, especially in a fertility forum.
It’s important to be cautious about taking medical advice from online forums, says Professor Geeta Nargund, lead consultant for reproductive medicine services at St George’s University Hospitals NHS Foundation Trust in south London.
“Patients posting information can be biased,” she explains. “Understandably, the emotional side can be more dominant than the factual medical care and information.
“Online forums do not take into account a specific individual’s medical history and concerns, and therefore the advice can be misleading. I worry that some patients will waste time, when their egg reserve may already be low, or follow wrong treatment options.
“It is essential that a qualified and trained fertility specialist is involved in decision-making and advice.”
The world of different fertility options that are discussed in an online forum can lead to a “self-imposed pressure” to try treatments, regardless of their evidential efficacy, says Katy Lindemann, founder of the Über Barrens Club.
“A lot of the time you are doing it because ‘Dr Google’ becomes ‘Dr Forum’, even if you actually think a particular treatment is complete rubbish,” says Ms Lindemann. “And if other people are successful, it feels like everyone else is riding off into the sunset and you are left kicking your heels in the dust.”
I worry that some patients will waste time, when their egg reserve may already be low, or follow wrong treatment options
Online forums often prey to abuse and misinformation
Meanwhile, Rachel Gurevich, fertility expert for Verywell Family, adds some users in an online forum unwittingly play the “Pain Olympics”.
“Those with primary infertility may be critical of those with secondary infertility, implying they shouldn’t be upset because ‘they already have kids’,” she says. “Those who have never miscarried may imply those who have miscarried ‘at least can get pregnant’. It can get really messy and painful.”
Ms Gurevich also warns against trusting reviews or endorsements of fertility clinics or businesses in online forums, as those giving glowing reviews may not necessarily be true patients.
“People also attempt to sell and buy fertility drugs in fertility forums,” she adds. “Not only is this illegal, but it is also dangerous. You never know how the medications were handled, if they had been refrigerated properly or were in an area that was too hot or cold. They could be expired or might be counterfeit medications, contaminated or tampered with.
“And this assumes the person ‘selling’ medications even has something to mail you. They may take your money and run.”
While most users of an online fertility forum are genuine, and the experiences are positive and supportive, it makes sense to be careful, says Ms Bold at the University of Worcester.
“There is some vulnerability to online abuse, so people need to be careful and vigilant as with all online platforms,” she concludes.