Messages to others having infertility issues

We asked the people we spoke to if there were things they wish they had known when they were starting out on treatment, and if they had any messages for others. Here are some of the messages they had for other people facing treatment, family and friends and health professionals.
Messages to other people facing treatment 
  • Infertility and treatment can be much harder than anticipated. 
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Sandra said, “Prepare yourself as much as you can. And just be prepared for a hard time.” This included preparing yourself emotionally and physically. 
Brian said, “Make sure that you’re emotionally ready for it because it’s such a draining process. And it’s not a quick process either. It’s over such a long period of time.” 
Clara and Lulu both recommended getting yourself as healthy as possible before you start. Many felt it was important to inform yourself as much as possible about treatment and options. Susan recommended taking an “active part” in treatment.
Catherine said, “Inform yourself as much as you can. Because it really makes a difference to how you feel in terms of the amount of control you have over what’s going on. If you actually understand what’s happening it does make it much easier.” 
John said that if you felt things were taking too long, “You have just got to keep nagging people”. 
Couples felt that it was very important to keep communicating through the inevitable ups and downs of treatment, “keep talking to each other.” 
Although this might not suit everyone, several recommended not shutting out family and friends, as it can be a lonely time. Liz said, “Don’t shut them out, but try to get them to understand how you might be feeling.” 
Getting support was also recommended. Belinda said, “It is important to get support whichever way you find useful.” She acknowledged that while family and friends might be “brilliant” they don’t always understand what it is like to go through the experience, so accessing support groups (face to face or online) can be a great way to find support from people who have also been through it. 
Fiona said it was important to be “kind to yourself”. 
Sarah said she realised that it was OK to feel sad, “awful” and “rubbish” because being infertile is a, “Blow of magnitude I have never expected.” She finally realised it was OK to feel bad, because it had been a “nightmare”.
Messages to family and friends
Knowing what to say, and how to support, a relative or friend who is going through infertility is difficult. People are on an often long and distressing journey with lots of highs and lows of hope and disappointment along the way. And no one knows what the outcome will be. 
People often don’t know much about infertility treatment before they get involved in it themselves; for example few of the people we talked to had been aware what was involved in an egg collection or knew much about the side-effects of treatments (See ‘IVF and ICSI’). Naomi said if friends and family could try and understand the condition and the, “Devastation it can cause” that would help. 
Several others echoed this sentiment and said that the best support that friends and family can offer is to just be there to support their friend/relative, as it can be a very “lonely time”. Being prepared to listen, and be there for them was the best you could do.
Martha felt it would help if people could make “A bit of an effort to find out about it… to have a better idea of exactly what you are going through and maybe how you feel about it.” 
She also thought it would help if people had a clue about what to say and what not to say. These included;
  • “Don’t tell everyone to adopt”
  • “Everybody has the miracle fertility story that they want to tell you…. they’re not of any comfort to people who haven’t actually got to the end of their fertility journey at all”
  • “Be prepared to listen, but don’t just say to people oh I am sure everything will be all right, because that is a meaningless thing to say because how on earth do you know?”
  • “Don’t tell the couple to relax and it will happen” 
  • “If a couple has been married or together for five years, don’t ask if they’re planning to have kids, because if they are you’ll soon hear it.”
Several said that they would have liked their friends to carry on as normal, although this can be difficult to get right. Fiona was very hurt that friends with children did not invite her and her husband away for the weekend. They thought she would be upset; she would have preferred to have had the opportunity to decide herself. Getting the balance between offering support and not “prying” can be difficult. Martin said that being tolerant and being sensitive to what they might be going through was the best you could do as a friend or relative.
Message to Health Professionals

The people we spoke to had several clear messages to health professionals:
  • Prepare patients for the tough journey ahead: “If they could prepare patients, and just say, ‘…possibly you’re in for a hard time.’…I think it would be helpful if people perhaps knew.”
  • Treat patients as individuals and not a number.

Everyone prefers to be treated as an individual rather than as a number, this can seem particularly important in fertility treatment “because there are an awful lot of emotions that go with infertility”.

Women and men liked clinicians to demonstrate that they had some empathy and understanding of what a deep and emotional issue infertility was for their patients. “To try and understand the devastating implications of what you are telling people”.

While it is not an illness it is a, “Profound life changing thing… being able to reproduce and have a family is something that most people take for granted. …you are very very emotionally fragile when you are going through the whole thing.”
Also see ‘Relationships with friends and family’ and ‘Information and support’.

Last reviewed July 2017.


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