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.
Martha is an American writer, living in Scotland. She is married with two children. Ethnic background' White American.
But I realised as I sort of went into it. I had no idea what it entailed at all. And I think, I think it is this thing that is kind of thrown around and people always just assume that there is an option and first of all they assume without any real understanding of how often it doesn’t work, you know for one thing and just the physical and emotional toll it takes on you. You can’t, well I mean I can describe it to you a bit, but I don’t think anybody has, you know, I think generally the way it is portrayed, you know, the way that people sort of view it, nobody has any clue what it is actually like, you know, what it does to you to go through it. I actually think it is quite dangerous. I think it is a dangerous assumption that we all have about it. And again I am not sure that that applies to me specifically because first of all, I never thought I would be going through it, and by the time I was going through it, it was because there wasn’t really much choice. Well there was a choice but there wasn’t a lot of choice if we wanted to do what we wanted to do. But I think ] I there is a danger of it becoming a kind of part of people’s life plan, you know, if I wait to have kids oh and it doesn’t work, oh just have IVF. And it is like, it is not like that, and it isn’t easy and it doesn’t necessarily work and you don’t have any idea what it is going to do to you, you know, or anything. So yes, and I think, not that it would, like I say, it wouldn’t have changed what I did but it also might have been nice to have a bit of an idea of how horrible it could be before I actually went into it, instead of suddenly being in the middle of it, realising how horrible it was.
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”.
Karen is a nursery nurse. She is married to her second husband, Phil (Interview 31) and has four children. Ethnic background' White British.
Just really, just don’t think that you’ve been silly asking any questions. Ask, ask as much and as many things as you can, because I think you don’t find out anything if you don’t ask. Don’t just go along with it. Make sure you ask, make sure you do all the questions. Because if you were ill normally, under normal circumstances and you walked into a hospital, you wouldn’t just accept somebody brushing you off. You would ask all the questions, you would make sure you had all the facts and know what everything was for, and I would say to people make sure you do. Because you’ll find it much easier to deal with.
You know, make sure, no question, I don’t think is too stupid or too small because I used to think I can’t ask that, that’s silly, but it’s not, because even though it is silly, it’s important to you, and having the answer, or even just getting it off your chest. I think makes a difference.
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”.
Sally is health researcher and lives with her husband. Ethnic background' White British.
Well I suppose just to, it is easier said than done, but, you know, try to remember that there is a life out there and try to remember, yes, it will be fantastic if it works but you know, a life without children isn’t, is by no means meaningless and that you are very likely to find other things that are really important to you.
And you know, to make sure, you know, that you don’t lose what you have currently got in an attempt to get the final piece of the jigsaw, you know, I think it put marriages under tremendous strain and some people will split up because of it. But what seems to me is a tragedy is if it splits up, if you split up because of it, when actually if you hadn’t let it become such an issue you would have had the chance to enjoy each other. Live you know quite happily in a very good fulfilled way.
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.
Naomi is a project manager, married to Martin (Interview 29). Ethnic background' White British.
Find out what you can about the condition. Don’t ever, say, “Oh I know it’ll work for you.” Because my doctor didn’t know that it would work for me. Nobody knows that it would work for me. How can somebody else know that it’ll work. It’s something people to say to make themselves feel better and it actually makes the person they are talking to feel worse.
Yes, find out about the condition, try to understand the devastation it can cause.
And also this is a really hard one but I suppose try to understand that actually you can’t really win. There are times when your friend will want to talk about and there are times when your friend will not want to talk about it. I think the best thing anyone ever did, ever said to us, was after our second, was it our second cycle, I think it was, I had a voice mail message from a friend of mine who said, “I just don’t know what to say. But if you want to talk about it I’m here.” And just acknowledging that you are not an expert on what they are going through, you don’t understand, so don’t say you do understand. Just be there for them, if they need it. If all else fails you know, a hug and a glass of wine normally works quite well.
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.
Martin is a franchise recruitment manager and lives with his wife, Naomi (Interview 28). Ethnic background' White British.
Be tolerant and you can’t fix it with all the will in the world, and don’t tell the couple to relax it will happen. Because in most cases it doesn’t. Be tolerant and understanding of perhaps where they are at, give them the space they need, but the support they need. Don’t be afraid to talk about it, or bring it up as a subject. It’s a bit like a bereavement sometimes, people don’t know what to say and therefore avoid it. It is not a taboo subject but a little bit of tact. Don’t talk about the friend down the road whose just had three children. You know, they won’t want to know about that. Just be sensitive to what they’re going through and be there to support them as much as you can.
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”.
Karen is a nursery nurse. She is married to her second husband, Phil (Interview 31) and has four children. Ethnic background' White British.
The first place I think, you know, my advice to them would be, you know, think that you are dealing with people and you’re dealing with something very precious in someone’s life, you know, and in one way you’re playing God with their future. And I think realising the implications of it, and the importance of it, and realise really what they’re going through as a person, rather than just the treatment. There’s a person with all sorts going on inside them there and you know, I didn’t feel like that was recognised. You know, you’re sat in a waiting room looking at all these people and thinking you just want to talk to them and you can’t. You just feel very silent and sit there, but I think, you know, I think having, they’re your link. I mean I felt that, especially going through it, they’re the people you’ve got to rely on, the medics are there, you’ve got to rely on them and if you don’t have that support from them, you know, even if it’s just that friendly smile, and how are you today? Or did you have a really nice weekend? Would just, even if it’s not about the IVF, just to have that rapport with someone and talk to somebody as a human being instead of just saying, “Right come in, let’s take your blood. See you later.” I think you need, I think they need to realise that they’re very very important and that the person, there is a person there, solely relying on them for that support and help. Because I don’t think they realise how important it is.
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.”
Liz is a midwife. She is divorced and has one son. Ethnic background' White British.
Advice to professionals? Without invading somebody’s space make sure that you understand that it isn’t just a physical process. That it really, really is emotional process. And some people won’t want to be nurtured, looking after, treated as the patient and all their emotional needs catered for, but many people do. So it is trying to get a balance of not invading the privacy, but also of making sure that they do feel looked after at a really, really difficult time. Particularly when things fails and give them time to come back to you, however many times they need to. To talk it through. And it is not just offering a counsellor I am saying, it might just be that, it might be they want to sort of talk to the people that have been dealing with them at the time. So it might be the nurses or the doctors, who can say to them, I can give you an hour of my time. And that might be valuable even then talking generally to a counsellor. Often it is specifics alongside the emotions that they want to talk about.
Also see ‘Relationships with friends and family’ and ‘Information and support’.