Information and support groups

Going through infertility investigation and treatment can be a long journey and women and men are often hungry for information and emotional support along the way. Here we discuss people’s information and support needs and how they were met. See “Resources” for a list of useful resources and websites. (See ‘Relationships with family and friends’, ‘Funding treatment and choosing a clinic’ and ‘Going to the GP’).
People wanted information for various reasons. These included wanting to understand more about their condition and treatment options, where to go for treatment, what they were putting their bodies through and what their chances of success were. Their information needs often changed as treatment progressed – for example research into IUI being replaced by IVF, or weighing up options when deciding whether to continue or stop treatment. People were also keen to hear from other couples about what it was like to go through treatments, and how other people coped. As Fiona said, “I actually think we didn’t know enough”.
People gathered information from a variety of sources – clinics, support groups, the Human Fertilisation Embryology Authority and NHS, books, leaflets, television and radio. Sandra said she found out a lot of information from books. She also joined Infertility Network UK (see Resources) and found their quarterly magazine very helpful, “Because it tells you about the latest research”. Clara felt there was lots of information in the papers and media, but you needed to treat it sceptically, “In the newspaper you might just get the sort of glamorous bits or the awful bits. The media is very black and white in that way.” Susan had her treatment a decade ago and relied on what her doctors told her.
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Nearly everyone we talked to used the Internet. It has dramatically changed how people find information. As Nigel said, “The Internet has been such an important tool. We couldn’t have done half the things we’ve done, and it’s made clinics throughout the world easily accessible.” Steve did searches on medical databases online, “Our searches probably became more sophisticated and in depth as more and more information became available.” Lulu used an American website that, “Had loads of information and, once I was able to see that and read other people’s experiences that did help.” Carol used the website Fertility Friends which she found very useful.
While the Internet was described as an invaluable tool, several people also raised concerns about websites that gave false information, or false hope, or could be scary. Christine, herself a doctor, said, “There is a lot of false stuff out there as well…. I tell (my patients) not to Google things because I think it can be quite dangerous”. Clare read widely but took the information she found on the Internet with a pinch of salt. George found it hard to find information about male infertility and treatments, in particular sperm aspiration. He also said that some of the sites he read caused, “A lot of worry for me.”
It is not unusual for people going through infertility treatment to feel rather isolated. Some had chosen to keep their treatment secret (see ‘To tell or not to tell’). Others who had told family, friends or work colleagues could still feel isolated if they thought that no one could really understand what they were going through. Catherine said, “I think you have to accept that people don’t really understand what you are going through, and people do sometimes say things that seem to you so crass and awful. But it’s just that they don’t understand”. Anne felt, “There is literally no support whatever for anybody” and Martha felt “completely unsupported”.
But others did find support from a variety of sources. People most often received their strongest support from their partners and family (see ‘Relationships with family and friends’, and ‘Impact on relationships’). Couples often went through infertility together as a tight knit unit and parents and siblings were often very supportive, offering a shoulder to cry on, encouragement, and showing an ongoing interest in their treatment. 
Being able to access other people’s experiences of infertility and treatment, whatever the route, was often very valuable. Fiona wished she had known more earlier on about the emotional rigors of treatment. Mike was grateful to have been able to chat to colleagues who had been through treatment. 
Sandra found it helpful to read about how other people had reacted. “It might be a sentence about somebody that feels... she couldn’t go to a christening and felt perhaps she was being selfish because it was a friend and she felt she should go. But she didn’t really know how she could get through the day. And you think, ‘Oh yes, actually I felt like that at one stage but I thought I needed to pull myself together’. But to read that someone else did, it just helped I think.”
Brian wished he and his wife had been able to talk to more people about their treatment – “In hindsight we really did need to be around people in the same situation.” 
Belinda had found support online and locally. She valued being able to talk to people who were in the same situation at the same time.
Support Groups
Some people made contact with support groups and went to meetings or talked on the phone or over the Internet. Some found them really helpful. Sally said that going to a support group, “Certainly helped put it in perspective… people were just having a much tougher time of it emotionally and financially”. Martin described their involvement in support groups as “therapy” for them – “the more you talk through it the more sense you can make of it… the more you can get your head around it… and that helps amazingly.”
Liz set up her own infertility support group after her ICSI treatment. She said it was really valuable, not only for the practical advice, but also for being able to share experiences with others, “I felt like that.” Olivia and Walter were involved in setting up a support group for donor conception, they felt very alone at the beginning (Donor Conception Network). Maggie now volunteers for an infertility support group. 
Of course support groups are not for everyone. Lulu found her visits to the local support group, “Really difficult. Everyone would sit there not really knowing what to say”. Tim said he didn’t think it was, “Healthy, a lot of people getting together like that”. Fiona felt she just couldn’t join an infertility support group, “It wasn’t right for me, because it was so painful for me”. Now she has adopted she has joined an adoption support group. Anne was unable to find a local support group and felt very alone.

The Internet has radically changed the support (and information) that people are able to access when they are have infertility. Several people we spoke to were very positive about the support networks they had been able to access via online fertility sites and forums. These had opened up new communities of support for them, which they found reassuring, and helped to make them realise that they were not alone and that their feelings were not unusual. George, who had been waiting years for an IVF appointment with his wife, found that going online helped with the waiting and the isolation. Maggie said, “I did use forums and I did find those really, really helpful. I would quite often just look and see what other people were talking about. And I think that, especially when people were letting off steam, that made me realise that I wasn’t the only person who was feeling quite negative thoughts towards tactless friends and family members”. 
However, some men we spoke to found that although they would have liked to use the Internet to find support from other men, they found that most websites were used by women only. “The guy’s community just doesn’t exist.”


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