In this webinar, Mandy Rodrigues, MA, Clinical Psychologist, has talked about ways of dealing with infertility, loss, and grief.
Many of the women I have met on this journey have used their experiences as a way of making sense of their lives. They are some of the most passionate individuals I’ve encountered. While some might say, “But they’re on the other side now, they have their children,” these women have an intense passion and a deep understanding of what we’re currently going through.
In Africa and South Africa, our support groups are predominantly run by individuals who have been through similar processes. Most of these leaders are also trained psychologists, which adds a layer of empathy and expertise to their support.
The original roller coaster starts even before we get to a fertility clinic. Then, you plan your life around it, start trying and suddenly, there is the surprise and shock that you’ve spent your whole life trying to avoid pregnancy, and now, nothing is in your control.
This drives people into some sort of action, scrutinizing their behaviour. Couples tend to look at their diet, consider different multivitamins to take, stop smoking and address these lifestyle factors but, when things still aren’t happening, this is where the problem starts coming in, as they begin getting irritated with well-intentioned advice and “fertility trigger” stars emerging.
The guilt, shame, and blame might start emerging. Eventually, there’s some sort of acceptance of the fact that some help is needed and, start seeking action to remedy this. Sometimes men get to this point a bit later than women.
At this stage, as support groups, we should step in because patients are still open to advice and recommendations. They’ve been on this small roller coaster and want to hasten the time to pregnancy. There’s a lot of research being done on the impact of diet, showing that if we aren’t eating healthily, it can affect fertility; so, we should focus on a healthy diet, lifestyle changes and importantly, managing chronic stress. This is the step when patients feel most receptive.
As patients enter the fertility clinic, it is important to recognize that a grief cycle begins and intensifies once treatments start; they learn about their diagnosis, pre-pregnancy factors and fertility challenges. At this point, an entire multidisciplinary team and including men in the discussions, are very important. Amazing research shows that men are included in the discussion, which helps them make decisions. There is a quicker time to pregnancy.
Elizabeth Kübler-Ross, a remarkable therapist, described a cycle of grief, in which she proposed that when going through grief and loss, distinct stages occur within a six-month grieving process. Initially, there is shock, denial, and disbelief, feeling numb and unable to accept what has happened. Then, comes the bargaining phase, questioning if the loss occurred because of past actions, such as having an eating disorder when younger or wondering if God is angry.
Following this, anger sets in and tends to be internalized. Often, during cycles, when a negative IVF result comes in, there may be a need to contact another fertility clinic, feeling the need to blame someone. This anger leads to realistic acceptance and often displaces frustration onto partners. Depression follows, and eventually, acceptance is reached.
However, the sad reality of infertility is that even after going through this cycle and perhaps accepting the failure of the first treatment or the first unsuccessful month, a new cycle of hope, shock, and disbelief begins. This pattern repeats endlessly but, it’s important to remember that a negative result feels like a significant loss. Infertility has been compared to having a life-threatening illness and experiencing post-traumatic stress.
If we look at the reality of grief, it is not as Kübler-Ross has said:
You’re going from anger to bargaining to acceptance to denial to depression.
Why do we feel guilty? Shame is when self-doubt us, internalize and there’s this inability to share because we blame ourselves for something. Guilt is also it’s feeling bad and blaming ourselves or others and this is where it starts becoming important in terms of the relationship and people around us and, the sad thing about guilt is under normal circumstances.
It’s quite a healthy reaction and a common experience. Research shows that people spend as much as 13% of their waking day anyway feeling guilty about something, and it’s more likely to emerge in those closest to us, 93% of those we share it with loved ones and, only 7% were strangers.
If we can convince ourselves that we’re responsible for something, we can maybe fix it. If we look at that it has an impact on both of you, your marriage, your social life, your financial stability, and your intimacy. You both start avoiding social events because you feel you don’t fit in, you both have to compromise financially and, your intimacy is a big problem and maybe both of you don’t address this elephant. We only see this as a couple’s problem, it doesn’t matter the reasons for your infertility. The consequences of your infertility are a couple problem, and recent research looking at marriage shows a positive relationship exists between a positive partnership and pregnancy outcome.
A lot of people struggle with this because men and women cope very differently with infertility. There are books written that people cope very differently just regardless of infertility, like in the book “Why Men Don’t Listen, and Women Can’t Read Maps”, it’s shown scientifically, that stereotypes mean being more spatial in thinking and women have been more kind of emotional.
Research done over 5 years on how our relationship changes across infertility says that in the first year, everyone’s coping as a couple team: assists with those doctor’s visits, goes to ultrasounds and has this one goal in mind. As we enter the second or third year, there’s a sense of disillusionment, but we’re still kind of coping, going through the injections as ladies, say to our husbands to not need to come to all the scans. By the fourth or fifth year is a very sad phenomenon which is called independent coping.
This is the elephant in the room. Men are geared to fix things, and they want to know the statistics and, if it means that they’re not going to have children. They tend to be able to have kind of boxes in their lives, with hobbies, friends, and work.
Unfortunately, for women, not having a child impacts every area of their lives. So, what often happens is men and women start coping independently. Is infertility going to destroy my marriage and result in divorce? The people who got divorced for very maybe reasons specifically related to infertility often had marriages that were not strong, to begin with. In most couples, 98% of people, as independent coping starts, can engage in certain role plays, games, and cards to help manage the stress. When independent coping does not happen, it creates a risk for the relationship.
Intimacy issues have been highlighted as something very important because it’s no longer about recreational intercourse anymore, it’s about procreation. So, intimacy issues are a big thing, you’re not alone in this. Even with laparoscopies and endometriosis, those kinds of decisions have a relationship with stress in a good way and sexual satisfaction.
As patients sit in front of me, I ask them, ‘Are you stressed? Do you think you’re stressed?’ Often, they’ll respond, ‘No, not about the infertility.’ However, my husband might say, ‘Maybe,’ or he might say, ‘My wife is.’ Is that happening?
People will often come to me and say, “But Mandy, I’m going through stress, and infertility” and other people will say “No, I’m not. It just helped me with the fertility” and, when we look at the studies on acute stress, it had interesting enough.
Acute stress is when we stress, our adrenaline goes up and, we get offered quickly. So, something like aspiration being painful and stressful or a modest increase in stress during IVF or during trying to fall pregnant does not seem to affect IVF outcomes. The number of eggs in maturity, viable embryos and pregnancy outcome were not related to acute stress, and I want you to think about it. Of those who fall pregnant, it is often those dealing with acute stress like COVID-19. It’s had a phenomenally bad impact here in South Africa but, during we had a hard lockdown last year, when it first broke out, we had so many positive pregnancy results and so many people who going through the real stress of losing their jobs and of worrying about getting sick. It wasn’t that they relaxed, and it happened, it was that they were so busy dealing with real stress that they managed their chronic stress better.
What are we missing is the role of chronic stress. Burnout has become a globally recognized medical condition. It’s a very real stress but what it’s become is something chronic, it´s walking around chronically worrying about what’s going to happen next.
If we looked at 24 years ago, and compared people who had kind of known they all had either endometriosis or breast cancer or none and, our whole aim was to have a look at what was the relationship between the mind and body. We weren’t even looking at pregnancy rates, we were just looking if chronic stress was at play in people who had more physical illnesses and, the interesting thing is we found that 67-83% of people and back.
Then, this was 24 years ago. The pregnancy rate with an IVF was 1in 3 and, if we managed people’s chronic stress their pregnancy rate doubled to 2 and a half times and, that was a doctoral thesis in 1996. We’re taking this further, and it’s become a digital portal because not only does it help with the relationship between the mind and body but, it helps with preventing burnout and, increasing the way you cope with your infertility. But imagine if we could manage 90% of your stress, you probably wouldn’t believe it. Many of the things we worry about are self-induced rather than real. If we can teach you healthy ways to manage stress, you’ll understand when it’s appropriate to stress.
Patients often tell me that mentioning stress about infertility feels like blaming them. They worry about the impact of stress on their immune system. However, it’s not about blame. We’re teaching people to recognize stress and manage two different types of stress. You need some good stress in your life.
You need to have some good stress in your life because, without it, you won’t secrete adrenaline, which triggers the fight-or-flight response. This response helps us cope with acute situations and develops coping skills. For example, in South Africa, if you face a potential hijacking and accelerate to escape, that’s good stress. But if you react the same way to a deadline, a long queue at the mall, or a flood of emails, you’re treating it as a life-threatening situation. This constant reaction secretes norepinephrine and cortisol, which is problematic because it’s 90% of our day.
When we talk about managing stress, people often say, ‘I don’t want to change who I am. This is what makes me effective. I don’t want to change my personality.’ We’re not saying that at all. The journey of infertility is largely out of your control. If we can give you a sense of empowerment to help you cope and reduce the impact on your immune system, you’ll have a better chance of conceiving. Additionally, I’ll send you links to an online portal that helps you manage your stress over a 10-session period. I can promise it makes a huge difference, even for someone not dealing with fertility issues.
How else do we deal with infertility?
The key is to educate yourself and make things predictable. If you’re about to visit a fertility clinic or go through a process, manage stress by understanding what to expect. Get informed, act, and set clear expectations for yourself and your husband so you’re both on the same page regarding work, family, and friends. Many people wonder what to tell their workplace about scans, how to handle baby showers, or what to say when friends and family suggest to ‘just relax’ or share anecdotal stories. If your marriage is experiencing difficulties, seeking help is important to avoid independent coping mechanisms.
Lifestyle is also crucial, but let’s not be obsessive about it. We often look at insulin levels to ensure people are eating reasonably. If you find yourself craving sugar and carbs in the afternoon and feeling a lack of energy, we can measure your insulin levels. Insulin impacts your overall well-being and egg quality in the long run, and we can manage it through diet. This approach is related to managing type 2 diabetes, but it can be effectively controlled with proper diet.
A big thing is also possibly sharing with others, and I know this is very difficult. One in six of us is going through infertility, and oftentimes we only hear about it when someone shares, they’ve had a miscarriage or something similar. Suddenly, the conversation opens. There’s a significant awareness campaign in South Africa right now focused on destigmatizing infertility, especially within cultural contexts, and figuring out the best ways to deal with it.
There are definitive actions you can take. I know everyone says, ‘Relax and it’ll happen,’ but about 10 years ago, I had to write a chapter for a textbook titled ‘Why Do People Who Adopt Fall Pregnant?’ Many thought it implied that adopting would make one more relaxed and thus more likely to conceive, which seemed unfair. However, the research showed that creating peace of mind about their journey helped people. They broke their journey into manageable parts and planned for the worst-case scenario. This doesn’t mean going into fertility treatments with the mindset that adoption is the fallback, but rather, it’s about managing expectations and reducing stress through careful planning and acceptance of each step in the process.
What I’m suggesting is creating a set of general goals for your life, alongside a fertility plan. This plan should be flexible. For example, you might decide that if one approach doesn’t work in three months, you’ll try something else, or after a year, you’ll reassess your options. By merging your life goals with your fertility plan, you can create peace of mind. This way, you’re focusing on the fertility plan without making it your sole priority.
I see many women who resign from work, stay in dead-end jobs for maternity leave benefits, or avoid travel because they might be ovulating. If they don’t fall pregnant, they have no other goals to look forward to. I often advise my patients to set five-year goals. This exercise can be done quickly, identifying immediate, one-year, and three-month goals without overthinking.
The concerning thing is that many people’s goals are solely fertility-related. It’s important to include work-related goals, spending more time with family, and addressing health issues. This approach ensures you’re not just working on your lifestyle for pregnancy but also for your overall longevity. By looking at and merging these goals, you can create a more balanced and fulfilling plan.
I’d like to conclude by discussing when to seek help. Recent research shows that by the time someone presents to a fertility clinic, 40% of the population already has a psychiatric diagnosis, not because they had a preexisting psychiatric problem, but because of what they’ve been through. They usually present with depression or anxiety. Another common issue is post-traumatic stress disorder (PTSD).
For example, if you buy a white Mazda, you might suddenly feel like everyone else has bought the same car. It’s not that more people bought that car; you’re just more aware and focused on it. Similarly, when you’re trying to conceive, you become highly aware of babies, pregnancy announcements on social media, and other related triggers, which can contribute to PTSD.
I know what it’s like to experience miscarriages, and I urge you to listen to my talk on Thursday night, which is about recurrent miscarriages. You’ve had, in essence, 2 rounds of IVF and 3 miscarriages, and I understand the panic we feel as we approach 41, worrying about our AMH levels, egg count, and egg quality.
I find it interesting to think about this situation as two beakers. One is filled with absolute sadness and devastation at what’s happening. People often think they need to deal with all that sadness and grief before they can start moving forward. But I urge you to see that both can happen together. I would also suggest considering what your next options might be. It doesn’t mean you have to take them but allow yourself to explore these possibilities before giving up. Think about how far you are willing to go. You might be surprised to find that exploring options like donor eggs can provide closure. Even if you decide it’s not for you, just considering it can help.
Imagining a life without children is dreadful. Personally, dealing with my cancer was far easier than imagining my life without children. So, I urge you to join the talk on Thursday night where we will discuss how to cope, especially with recurrent loss.
This is very interesting research. Lately, there has been an impact on sperm quality, sperm insulin levels, and even autoimmune diseases in more stressed men. It takes the two of you, and I often if I can get the partner in, even if it means just dealing with your stress together. The thing is, you’re learning from one another, you’re learning skills that you can use together and avoiding that independent coping. So, for me, the ideal is dealing with it together because a huge part of your stress is how you both deal individually and how can we merge that so that we’re on the same page.
So, yes, I feel this. I mean, the original research on psychoneuroimmunology showed that men, regardless of whether they changed their diet, stopped smoking, or ate less red meat if they didn’t manage their stress, were at risk for another heart attack or a subsequent heart attack. No matter what they did with their lifestyle, if they didn’t change stress, the immune system was still impacted. I think it is something you should deal with together.
And remember, a lot of this is online because now, virtually, you can do this on an app on your phone, and you can do it together. And so, COVID has given us the one positive that a lot of AI programs have been developed in order to manage this together. So yes, I would strongly recommend that.
That is quite a journey to have gone through, and at the age of 45, and then to go through, you know, everyone said you use an egg donor, and your statistics are 80-70%. So, to have had two different donors and to have eight failed donor cycles is extremely stressful, and the pressure on the relationships is so difficult. I think that you know, I’m kind of, maybe I’m a bit of a fatalist in terms of when I do couple counselling, etc., and I kind of think, you know, what if somebody wants to leave me for this? What if the stress got worse in the future? What if we had children and it got worse? Would this person still be there for me? That’s why it is important to manage the coping together, to manage this independent coping, because even having children and having options that work, it’s not that we want to have this easy escape routine. I would say that we need to manage our stress, and we need to look at how far each of us is willing to take it.
You know, I’m not sure if you did pre-genetic screening with your donors. I’m not sure if you did, so here we call it PGS or PGD. I’m not sure if those particular donors were not great. Furthermore, I‘m not sure if they froze in cycles, but you’re more than welcome to email me and, again, to also listen to that talk. So, you’ve had every taste possible but no pre-genetic screening. Look, I am not a fertility specialist. I’m married to one, but I’m not one. If I were sitting there, I make a lot of decisions in the clinic that we discuss with a team. My next step, honestly, would be to possibly do pre-genetic screening if you’re getting quite a few donor embryos or donor-conceived embryos. It is possible to have pre-genetic screening to just eliminate that. You know, who knows, there may be a sperm problem.
We don’t want to get involved in a blaming or shaming or guilty situation, but to have so many journal cycles and then possibly look at sperm, I would strongly recommend that you do pre-genetic screening because then we could eliminate, well, is it the journey eggs? Do we possibly need donor gametes, which I know is a big step? I don’t know if it would help you know it is not; it’s a shared journey you’re going on and nobody is to blame. It’s not just, you know, so I don’t know. That test is frightening, I guess, to have, and I’m not sure how long that’s going to take. But if we find out it is the sperm, then you know somebody leaving you because it’s not working in you is kind of counterproductive. It’s not going to work with somebody else, you know.
And you can definitely email me because I think it’s quite a complicated situation, and I don’t want to either blame or shame or say this is the next step you should take.
You know, the wonderful channel—I don’t know how many men are watching—but the wonderful thing about me is the kind of will often say to me, “I’m not doing an IVF, I’m not paying for IVF, I’m not even going to a fertility specialist because I’m not shooting blanks, I’m not doing it.” And then men hit that junction, and even the ones who didn’t want to take the next step further, they do. So, the women tend to look at what is my worst-case scenario and think, “I’m going to try this, that next step,” and they are very open, more open than what you think, to look at the next step. But they almost want more science, more hitting their T-junction, and you would be surprised at how many of them then actually look at the next step.
But I think it’s something you should explore together and bring out those fears in terms of what he has. You know, yes, you’ve tried options, but there is still a donor gamete. But again, we don’t know if that is a viable option. But I would say, don’t take it as a no when your husband says no. When he reaches that T-junction, he is more likely to look at the next step. But you will reach that T-junction first, and then I think that discussion needs to be opened up.
I want to add to close that, what I’m saying is manage your stress, your chronic stress, because not only does it help you conceive, it helps you cope with the process better by empowering you. Think about taking a nutrient or just watching, not obsessing about your diet, because what creates stress is when we obsess about plastics and estrogen and what we are taking in, etc. So, you know, be reasonable about that and then focus on that marriage. Don’t lose your marriage over something that we can help you both come to terms with.
