In this webinar, Andreia Trigo was talking about emotional support on your fertility journey, stressing how crucial it is for your well-being and successful treatment.
When we talk about emotional support, it often seems like a vague concept. However, there are guidelines and policies related to emotional support. For instance, NICE in the UK has produced a statement about fertility care, mentioning that people with conception problems should be offered counselling before, during, and after investigations and treatments. They recognize the significant need for it and continue by stating that people experiencing fertility problems should be offered counselling because fertility problems, as well as the investigations and treatments associated with them, can cause emotional stress. It’s one of the most challenging times in people’s lives.
Individuals experiencing fertility problems should be:
These guidelines have been available since 2017, stating that emotional support should be an integral part of treatment.
Additionally, the HFEA, a regulator of fertility clinics in the UK, states that clinics must have a policy outlining how women, donors, and their partners will receive appropriate psychosocial support from all staff before, during, and after treatment. Interestingly, they mention all staff, meaning your support will come from counsellors, psychologists, doctors, nurses, and embryologists. The whole team is involved, and clinics need to have a policy in place explaining how they will provide that psychosocial support. HFEA guidelines also emphasize that emotional well-being and support should be embedded in all interactions women and their partners have with the clinic. The focus should be on simple, practical improvements that can be adapted to specific groups and resources.
In 2016, Fertility Network UK and Middlesex University conducted a significant study on the state of emotional support for couples trying to conceive. The data shows one of the outcomes of the research focusing on the psychological impact of fertility problems and treatment. The chart clearly shows that the consequences of infertility are not just physical; they are emotional, and these emotions have consequences on the way we feel about ourselves, others, and our interactions with others, especially with our partners. In this study, respondents often felt sad, frustrated, and worried. 42% of respondents experienced suicidal feelings.
The same research paper states that psychological distress has physical, social, and behavioural consequences. Emotions have very important consequences on our bodies, in our social interactions, and in the behaviours we engage in throughout the day. Emotional distress is also the number one reason patients stop fertility treatment. On average, 3 cycles are needed for a woman to get pregnant, however, many times much more than 3 sessions are needed to be successful. Because of emotional distress, because of sadness, depression, and suicidal thoughts, some women might not be able to go ahead with the second cycle or the third cycle. That’s why, providing emotional support for patients so they can feel empowered to have the treatment that will ultimately give them their babies is crucial That’s why emotional support needs to be part of treatment—not just during treatment, but also much more before and after, just like the guidelines say.
As shown on the graph, the distress score reaches up to 70% for individuals who have not received any treatment. This indicates that those without treatment experience very high levels of distress. Even those who are undergoing treatment continue to experience significant distress. Successful treatment does not eliminate distress; new anxieties and fears often arise during pregnancy after such a challenging journey. For those whose treatment was unsuccessful, the distress levels are even higher. Regardless of the treatment outcome, emotional distress remains a constant, underscoring the need for tailored support.
Different resources are necessary:
In another graph where they showed the impact of fertility problems on relationships with friends, family, and partners, we can observe that sometimes the relationship was difficult, sometimes the relationship was fine in most situations, but there are some situations, mostly with friends, that have ended. That’s because friends may continue to have their pregnancies happening very easily, they have their babies, and they just don’t understand what you’re going through. That helps explain why some friendships end.
On the other spectrum, some partner relationships—some romantic relationships—have improved because a lot of couples have managed to grow together beyond the massive challenge that is trying to conceive. Overall, 70% of responders reported some determinal impact of fertility problems and/or treatment on their relationship.
The research also highlights the importance of accessibility to emotional support, especially given the prevalence of negative emotions such as sadness, anger, frustration, and even suicidal thoughts. Although guidelines emphasize that support should be available, the reality shows a gap in accessibility.
This data underscores the need to make emotional support readily accessible and free for everyone who needs it, as a majority were unable to access it due to financial barriers. There’s a very minimal amount of people who were getting support from peers, from other people who were going through similar journeys. It’s so important to get that—to understand that you are not alone, that other people are going through something very similar to you.
Some signs of stress and distress can present as irritability. You might not be very patient at work, with your partners, or with the things happening around you. You might be feeling extra anxious or nervous. Furthermore, you might be fearful—sometimes even irrational fears that you don’t really know why you have. You might be afraid, for example, that your partner might leave you if you don’t get pregnant, or that your friends will leave you, or that you will end up alone. These are irrational fears or worries about what is happening.
You might be feeling very lonely. Some people present a lack of concentration because it almost feels like fertility takes up 24/7 of your time—thinking about it, what to eat, what to do, what not to do, and what I could have done differently. It can make it difficult for you to concentrate on other things. Sometimes you might have a poor appetite, you might be tearful, and you might have certain triggers—anything can make you cry, whether it’s seeing children, pregnant women, or hearing a song. You might be restless, trying to keep yourself so busy that you don’t feel, that you don’t notice the voids, the emptiness that infertility has caused in your heart.
Other signs that you might be looking for include nail-biting, trying to rush around, lack of eye contact, and the appearance of disinterest or disengagement—so you’re not enjoying other activities as you would otherwise. If you have some of these symptoms, and you notice they happen most of the time instead of just sometimes, it’s something to be aware of, and you might need some help.
As Andreia mentioned during her presentation, she cooperates with a psychologist at the Enhanced Fertility Program, who created a checklist to use to know when to seek help.
There are different types of support available, 75% of people who used counselling found it useful, but counselling is not the only way to get support. People who went for counselling found helpful things like understanding the facts, the things that they can expect, exploring or dealing with new feelings, and having someone impartial to talk to—someone who understood and normalized the feelings. You are not alone; it is normal to feel the way you feel, given the circumstances in your life right now. Counselling helped them accept the situation and face the future—embrace treatment, embrace the future instead of angrily pursuing it. Counselling helped them in their relationships with their partners, and it helped them speak to someone non-judgmental about what they were going through. Some people went ahead with counselling because it was required to get treatment.
If you had a bad experience with counselling in the past, note that there are different types of counselling. It’s useful to try another one and see how that goes because you need to feel comfortable with the person you are talking to.
Some people have also used alternative therapies to find emotional balance. Many have used acupuncture, yoga, meditation, reflexology, Chinese medicine, and hypnotherapy. One size does not fit all, so you need to experiment and find what works for you.
In terms of support, some people seek help to make lifestyle changes that benefit fertility, both physically and emotionally. This often involves adjusting their diet, reducing alcohol and caffeine intake, modifying exercise levels, and employing stress-reducing strategies. Emotional support has a physical component as well.
As a nurse, I often say that we can’t separate the physical and emotional aspects of well-being. Every physical problem, like infertility, has emotional consequences, and every emotional or psychological problem has physical effects. Therefore, the support you receive should address all these areas: physical, emotional, social, and spiritual.
Creating your support strategy will be different for everyone, but it’s important to have it in your pocket or handbag. You can write down a table called “Emotional Support Team” on a piece of paper. List contacts such as healthcare professionals (nurse, doctor, counsellor), trusted family members or friends, and online forums or social media groups. It’s crucial to have a mix of professionals and personal support. Professionals like nurses, doctors, counsellors, and psychologists have strategies to help you cope and move forward. Friends and family members provide love and trust, while online forums and support groups offer a sense of belonging and connection.
In addition, create an “Emotional Support Plan” over time. Write down specific strategies for coping with challenging situations, based on past experiences or new techniques you’ve learned. For example, if you encounter a challenging situation, list what you will do to cope.
Here are some practical strategies to help manage emotional distress during your fertility journey.
Related reading:
Everything that is a bit unusual to us, and because we haven’t had previous experience with previous cycles can bring us a bit of anxiety and worry and nervousness, so it’s absolutely normal to feel that way. Because we don’t know if it’s going to work or not again, it’s something that tends to make us feel a bit anxious, so number one, know that you’re not alone, and your emotions on this are absolutely expected. Now things that you could do. I would say, start with understanding what you are afraid of. If you write down your fears, you might notice that some of the fears are not real fears, they are hypothetical fears. They might be for example: well, I’m afraid that something in the future is going to happen that hasn’t happened yet, or your fear might be something more practical, what if I go to the clinic and something goes wrong, and this doesn’t have a successful result.
Write down your fears to understand is this a true worry for which there is a real solution or is this a hypothetical worry that doesn’t have any solution. After you’ve written them down I want you to write down everything that you’re doing to challenge that thought, maybe you are doing everything you can, you are eating the right foods, you are doing the right exercises, you have an amazing team, so there’s a big list of things that you’re doing that means that you are doing everything you can, and the chances of it working are the best chances that you could have. So make a list of your fears, all the reasons why this is going to work. Then some of those grounding exercises using your five senses and doing a bit of mindfulness. If you start doing mindfulness, I would say once a day, three to five minutes there’s a lot of mindfulness recordings available on youtube, and that can be very very powerful.
I hear this all the time, it’s almost like too consuming, it takes all our day. I would say that it’s important for us to continue doing things that are not related to fertility, so maybe if you schedule a time to talk about these things with your husband, and say for example tomorrow between five and six, we are going to talk about our fertility treatments, and it might be that we are not going to resolve all our issues about fertility treatment or answer all our questions or make all the decisions that we want to make, but we’re going to decide some of them. Then we can schedule another day, another time when we’re going to talk about it again. Leaving the rest of the time for you to have your life back, your life back with yourself, with your husband and with your friends, scheduling time I found has been one of the most powerful strategies for me. Scheduling a time and sometimes even scheduling a place, having places around the house where you don’t talk about fertility treatment. The places that are sacred where you’re just there to enjoy yourself, so I don’t know if it works, but a lot of people have said it has been useful, so I hope it works for you as well.
It does seem like a lot of things have happened that shouldn’t have happened, and I’m sorry that you’re going through it. It must have been very stressful for you to go through it. I’m not sure if you are already getting any special one-to-one support because it can be very overwhelming when there are so many things going wrong, and we have the feeling that other things are going to happen that are also wrong. This is what we call in psychology the self-fulfilling prophecy, and the way it works is that when something happens that goes wrong, and we believe that something else is going to happen wrong. Then things end up happening wrongly, and it reinforces the initial belief, then the things continue to go wrong.
There infinitely needs to be a way number one to break the cycle and secondly to learn how to control or respond to these things that you’re not able to control, which I know can be incredibly difficult. I would say that maybe it would be good to have one-to-one sessions to understand how you can break this cycle, how can you differentiate between the things that you can do something about and the things that you can’t do anything about. Is there a way for me to schedule this research process to maybe half an hour a day to look into a certain topic and not to do it 24/7. Is there a way for me to maybe have other people involved that makes it less likely that things will go wrong, so I think there are different approaches that you can have, but I think that the story has is already so complex maybe it would be good to get one-to-one support to try and break that cycle.
I understand how challenging it is to feel that everything is going wrong, I have been there, so I do understand. I think that would probably be the best way to help you break the cycle, so then finally something starts going well and then everything else starts going well for you as well.
