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The words doctors use during fertility care can wound the patient sitting across the desk. “Failed cycle.” “Poor responder.” “Ovarian failure.” For a woman already carrying the grief of a child she has never had, those words can feel like nails in a coffin. Oluyemisi Famuyiwa, a fertility specialist, argues that infertility grief is compounded by cultural stigma and by clinical language medicine rarely audits. This episode is based on her article “The emotional impact of infertility is grief unspoken,” published on KevinMD. You will hear why up to 40 to 50 percent of infertility cases involve a male factor, why the team-based script (“do it for your partner”) often gets a resistant husband to agree to testing, what social media hides about donor eggs and late-in-life pregnancies, why no supplement can reverse the biological aging of eggs, and why being culturally nosy is one of the most useful clinical skills a fertility doctor can develop.

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Transcript

Kevin Pho: Hi, and welcome to the show. Subscribe at KevinMD.com/podcast. Today we welcome back Oluyemisi Famuyiwa. She’s a fertility specialist, and today’s KevinMD article is “The emotional impact of infertility is grief unspoken.” Oluyemisi, welcome back to the show.

Oluyemisi Famuyiwa: Thank you so much. Thank you for having me.

Kevin Pho: And I think we were talking offline, you have a book on infertility, so congratulations on that.

Oluyemisi Famuyiwa: This particular article, yep, The Quest for Infertility.

Kevin Pho: We’ll definitely have you back on another show to talk specifically about your book. I know that this story is from that book. Tell me what this particular story’s about.

Oluyemisi Famuyiwa: So what led me to write the article is to explore how grief involves fertility, and also to see the intersection of culture. How does culture affect fertility? How do people experience it and what kind of grief abounds with it? So exploring those intersections is what led to this article.

Kevin Pho: And tell us more about what the article is about. Tell us about some of the cultural differences about the grief surrounding infertility.

Oluyemisi Famuyiwa: Absolutely. So what came up to my mind is that over the years, we’re still dealing with the same issues. It doesn’t matter what century you’re in. Whether it’s in the 18th century or in this century, the same process has been going on around fertility, around grief, around motherhood.

And to make it more complex is the cultural, the way society deals with it and how people experience it. That’s what I want to explore in this article.

Kevin Pho: So tell us about one of the stories that you shared with us for those who didn’t get a chance to read your article.

Oluyemisi Famuyiwa: Yes. So one of the stories that was very powerful for me, I borrowed it, I extrapolated from a powerful Nigerian lady in the 18th century who was extremely wealthy. And by today’s standard, she would be considered the modern-day Oprah or media mogul or extremely wealthy. But her one downfall was the fact that she didn’t have a surviving child. And it was the stigma of that. No matter what her wealth was, no matter what her success was in terms of her entrepreneurship, society still saw her as being a failure.

So then you look at modern day, especially in some paternalistic cultures, people still look down, no matter what age it is, on women who may not be able to have children. I know in my clinic I’ve had women who’ve struggled with this stigma. I had a woman who was invited out of her marriage and invited out of the family dynamics because she was stigmatized, seen as, the key word they would use is barren, right? That she could not conceive. And that comes with a profound pain and grief that comes with it.

I think psychologists call it ambiguous loss, right? You’re mourning the loss of a future child that you’ve never really had. Psychologists call it ambiguous loss. It’s like you’re mourning a child that you’ve never had, and that comes with it some of the cultural underpinnings of it. So these women are suffering the loss of that child, but in addition to it, they’re also suffering the stigma that society puts on top of it.

And that can lead to depression, can lead to isolation, being isolated and not being able to find closure to it. That’s what I wanted to explore in the article that I wrote.

Kevin Pho: So tell us more, especially in the Nigerian culture, the stigma that’s associated with it. Is it talked about openly? Is it just hidden and implied like in the story that you mentioned? Whatever happened to her? How did she deal with that stigma and those emotions of loss?

Oluyemisi Famuyiwa: Her story is rather poignant because she was extremely wealthy and she actually was able to save the city from bankruptcy, if you will, was able to run the blockade that was around at the time. So no matter what she did, they didn’t really care about all that. The point of the matter was she didn’t have a child. So all her successes did not really matter.

Her story was a little sad because I think there were two sources of information. One is the historical archives that we could dig, and then there’s also the narrative that’s told in stories and plays that can be fictionalized. So when you look at what we get in historical archives versus what the play or what was in modern comedy, you know, we weren’t there, but you can extract the one common theme was, because of her inability to have another child is what led to really her downfall. And there are a lot of women who are still going through that right nowadays.

So I think in modern medicine, we should realize, especially women from different cultural backgrounds, that they’re going through this and should make allowances for it. And also, we have to be careful with some of the language we use in medicine, and try to be culturally sensitive. Because it’s almost like they’re going through a double loss, if you will. And then the stigma and shame that comes with it. And the fact that they can’t talk about it, they don’t know who to talk to, right? Especially if the family they would normally go to is the one that’s ostracizing them, and we in the medicine don’t even realize that they’re going through all this. So we don’t know how to reach out to them and the language to use to make them open up and say, “OK, this is what’s on my mind,” right?

Kevin Pho: You said that there is some language in medicine that can perpetuate that stigma, and we have to be culturally sensitive. So what would be some examples of some clinical language that we’re talking about here?

Oluyemisi Famuyiwa: OK. So some of these women, I know I had a patient who was from East Africa who was stigmatized because she was, I mean, hopefully this wouldn’t happen nowadays, but it’s still happening in some cultures. She was married off when, you know, as soon as you could get a menstrual cycle, you’re married off. She was married off at age 13 to someone who was 15 years older than her, and she was brought to me by her husband’s niece actually when she was now 30, 31. And the problem was that she hadn’t gotten pregnant. So they called her barren, right? She wasn’t a woman. She did not fulfill the role of womanhood. She’s living with the shame, very timid, very shy.

So when we come in medicine and we say, “Oh, you’ve had a failed cycle,” or, “You have ovarian failure,” right? You hear the repeated tones. Failure, poor responder. That is like nailing the, driving the nail into the coffin. And they go back and go, “Oh my gosh, I can’t even be a woman. I’m not a woman because I cannot conceive. I’m not a woman and I even fail at this thing that’s supposed to help me.”

And in reality, especially in the patient I just gave you, the issue when I actually tested both of them was that he really didn’t have any sperm so to speak. For 15 years, she was actually emotionally abused in this household, until her husband’s niece, who was a nurse here, said, “Enough. This can’t be going on.” And she couldn’t turn to her family to say, “Oh my gosh, I’m being emotionally abused,” because they’ll say, you know, “What do you want? You are ungrateful child. We married into a beautiful family. He’s taking care of you. He has money. He built you a house. What more do you want? You’re so ungrateful.” She couldn’t talk to anyone.

Kevin Pho: You know, it’s funny that you say that, because just before you, I had another reproductive endocrinologist, Erica Bove, up in Vermont. And she was saying that almost up to 40 percent of infertility has a male factor potentially behind that.

Oluyemisi Famuyiwa: Absolutely. 40 or maybe even 50 percent, you could argue, if you take the combined cases together, right? And when you combine that within a social construct where these women cannot even say, you know, they’re so timid they can’t even suggest to their husband, “Oh my gosh, you know, maybe we should go get tested,” or, “Maybe you should get tested.”

So sometimes, and believe me, I do see patients like this. I don’t judge them. I feel for them. You can’t say, “Well, it doesn’t make sense. Shake out of it. They shouldn’t treat you that way.” It is what it is, right? And I have to help these women. So what I tend to do in that circumstance is say, “Well, can you tell them that the doctor wants to see both of us together?” Right? So then I can try to connect with his better self. And knowing that some of these cultural dynamics, I truly understand it, right? I really do.

So there are certain words that I tend to use when I’m speaking to their husbands, trying to make sure, because, you know, they don’t know me. I don’t live in their house. So I have to be very diplomatic what I say, because it’s just going to perpetuate her suffering, especially when she sees that she has no way out, right? It’s not for me to judge. It’s for me to support and help. So in that case, I can come with more sensitive wording to say, “OK. How can I bring this gentleman to come forward and say, you know, ‘Let’s tackle this as a team?'” Not as, “Oh, it’s her problem. Go fix her first.”

So I’ll say, “Well, let’s work together on this as a team. I can’t even approach your insurance to come up with a treatment plan if I don’t even have the basic data on both of you.” And they’ll go, “Oh, OK. Fine. All right. I’ll get tested.” And sometimes, you know, I remember I was speaking to one of the very famous doctors who treated men from the Middle East. Same problem. And I said, “How do you cut across to this man?” And he said, “Sometimes you come to them and say, ‘OK, fine. If you don’t want to get tested for you, please do it for your partner.'” Or, “Don’t do it for you, do it because of this,” you know? So then you start to break down their guard and start to get in there and let them understand that I’m on your side, and this can actually work if we work together as a team. And truly, your wife is trying, and if you can come on board and be supportive, it would make this a little bit more easier.

Kevin Pho: Now, what about the scenario where you have a patient and their partner from a culture that you may not be familiar with? Tell us the type of questions you would ask them to really gain that knowledge so you could be more sensitive to their culture.

Oluyemisi Famuyiwa: It’s really tricky because a lot of times sometimes they hide it. They’re not going to be open to you, especially if they feel that you’re not hearing them, right? So this is where listening to them comes into play. You know, there is something called in medicine, I’m sure you’ve heard, it’s called the know, a like, and a trust, right? If they feel that they don’t know you or you are not interested in knowing them, then they’re not going to necessarily trust you or open up where you will start to hear some of this thing.

So you do have to spend a little extra time and try to get to know them. Ask them basic questions. “Where are you from?” or “Tell me about your background,” or “Tell me about your understanding of this.” “Oh, wow, that’s interesting. You come from, oh, Timbuktu. Let’s discuss that. Where is it? What are the things that you experience?” And just being culturally nosy, if you will. You know, just asking questions like that. Like, sometimes, you know, when I teach residents and medical students, I always ask them, “Aren’t you nosy? Aren’t you curious?” That will guide your questions that you ask. Just be a little nosy and then listen. You don’t have to talk too much, but if you’re nosy and then you listen, you’ll be surprised what comes out.

Kevin Pho: We’re talking to Oluyemisi Famuyiwa. She’s a fertility specialist, and today’s KevinMD article is “The emotional impact of infertility is grief unspoken.” One of the things in your article was the impact of social media, right? And that’s really changed the emotional experience of infertility. So tell us more about that.

Oluyemisi Famuyiwa: Social media can compound it. Because in social media, these patients go in and they see glossy photos of a completed family, or huge baby announcement, or all their friends are posting and saying, “Wow,” you know, “Here’s our pregnancy stick just came out.” So the person seeing this now says, “Oh my gosh,” you know, “Something truly must be wrong with me.” So then I tell them, “I need you to detach a little bit from social media, because not all that glitters is gold.”

And one of the things I like to talk to my patients about, I tell them, “Look, when you close the door, when you go home, it’s you and your partner, right? It’s not you and the whole world. You need to try to dial it down, because the people that you think have that perfect family out there, they’re not telling you everything they do.”

And this is actually very common among Africans, right? If you see a post from a 52-year-old who told you, “Oh my gosh, look at my twins. Here’s my belly.” Yes, maybe .00001 percent she could’ve gotten pregnant on her own naturally. I’m never going to say zero, 0 percent. But more chances are, you know, more chances are she did need help. Chances are she used donor egg. But they won’t come out and say it, right? Because they’re also afraid of being stigmatized. Instead they’ll say, “Oh, I’m so super fertile,” right?

Even today I had another patient who came to see me and says, “Well, I was turned away from another clinic because I turned 48, and I don’t want to consider donor egg, and I know for sure, and I saw it in a dream, I know I’m going to get pregnant.” People don’t really tell what they do. It’s not customary in our culture to tell and divulge the treatment that they went through. They’re not going to tell you, right? They’re going to make it look so fantastic, and this is what happened with me.

So I think I encourage patients, please work with your doctor. Yes, you can take supplements, but we have not been able to supplement our way out of a biological phenomenon of the eggs aging. We haven’t done that yet. We haven’t been able to supplement our age to recreating new eggs, no matter what they say on social media. So finding a professional that you can talk to. And I tell them, “You don’t have to come to me,” right? “Find someone you can talk to,” because a lot of this that I’m seeing, and I see it all the time, is if they don’t trust you, they’re not ready to listen to anything you say. They’re not going to listen.

Kevin Pho: And we’ll end with some take-home messages that you want to leave with the KevinMD audience.

Oluyemisi Famuyiwa: Take-home message, we cannot supplement our way out of a biological phenomenon. Number two, there is a cultural part to fertility that’s really not talked about, and that cultural part can be inflicting severe pain on your patient. And there’s a grief that comes with infertility that, yes, we all talk about fertility is painful. We all have heard about the depression and anxiety. But when you compound it with a cultural language, that’s a whole different angle that most clinics don’t even know about or even address.

Kevin Pho: Oluyemisi, again, thank you so much for sharing your perspective and insight. Congratulations on the book, and we’ll hope to see you soon.

Oluyemisi Famuyiwa: Thank you very much.