Finding out that you are not able to do something that comes so natural to others and receiving a diagnosis that YOU ARE INFERTILE shatters your world. This leads to deep sadness, shame, worry, anger and frustration. In order for us to understand the causes of anxiety and the emotional impact infertility has on many of us, we are sitting down with fertility specialist Dr. Massie of ORM Fertility based out of Bellevue, WA and Sarah Smalley – a Licensed Mental Health Counselor who works closely with Dr. Massie and her patients.
[Teresa B. Wolf] Welcome to the Gift of Parenthood podcast. Today we are diving into a topic that is all too familiar to me and many others and that is how anxiety can affect women with infertility. For those of you who don’t know me, my name is Teresa Wolf and I am the founder of a nonprofit organization the Gift of Parenthood. As a mission-driven organization, we have been fortunate enough to partner with clinics throughout the US to offer fertility grants to couples and individual suffering with infertility. Look, finding out that you’re not able to do something that comes so natural to others and receiving a diagnosis that you are infertile literally shatters your world. This leads to deep sadness, shame, worry, anger and frustration. And in order for us to understand the causes of anxiety and the emotional impact infertility has on many of us, we are sitting down today with fertility specialist. Dr. Massie of ORM Fertility based out of Bellevue, Washington.
I would like to mention that we partnered with ORM Fertility on our Spring Blossom Grant Giveaway and together we were able to give away almost $16,000 to a Seattle-based couple towards their IVF treatment. Also joining us today is Sarah Smalley, a licensed mental health counselor who works closely with Dr. Massie and her patients. Sarah’s background in counseling women struggling with infertility is very impressive. So we are hoping to gain some insight on how anxiety affects fertility.
Welcome and thank you so much for being with us today. I know that both of you deal with issues of fertility and anxiety on a daily basis and some of us even refer to women in your profession as unsung heroes of women’s mental health. With that said, I feel you are the perfect guests for our podcast today. I know from personal experience that anxiety associated with infertility is a very real thing. So how often do you see this as the root cause of depression in patients dealing with infertility?
[Sarah Smalley] You know, it feels like depression is really a combination of several different things. Anxiety definitely plays a huge role in it. Mainly as a root cause feels a little tricky, but it definitely is a huge factor for sure.
[Teresa B. Wolf] I mention this because on a daily basis I deal with women, and I’m not a medical professional by any means, but I often get asked how do I deal with this because I’ve gone through the ups and downs of infertility and I’m at a place where I don’t know where to turn. So what would you says to those women? How does it start? What are the causes? And how does it affect the patients that you see?
[Sarah Smalley] There are some neurological mechanisms at play. We get anxiety a lot from our limbic system which is part of the brain that is responsible for processing emotional stimuli and then it sends it to your prefrontal cortex where we make sense of it and put that processing into behavior. So that’s the part of the brain that impacts our decision-making. And there’s a lot of different systems and a lot of stuff that gets going depending on what kind of anxiety. There are some neurotransmitters and things like panic when anxiety transitions into panic disorder. There’s an inhibitory neurotransmitter called GABA that they think might be underutilized in that situation. We’ve got some cool brain scans that show that the limbic system lights up a lot more in folks that have higher anxiety. It’s a complex mass of different systems kind of all working together and really at it’s core it’s meant to keep us safe. That’s really the thing about anxiety, it’s an adaptive thing that we all have and need. It’s when it becomes hyper-vigilance and it kind of takes over and becomes the thing driving the car, that’s when people it feels like what you’re describing are coming to you just saying “I don’t know what to do. I’m at my capacity. I feel totally powerless and this is operating me right now.”
[Teresa B Wolf] For myself I remember going through the fertility treatments and I had anxiety just starting the treatments and then towards the end I just felt depleted. I was in a depressed zone and I didnt know where to turn. So what would you say to someone like myself through something like this? Where would you start, where would you begin?
[Dr. Jamie Massie] I would say to start the fact that you bring attention to the point that you felt anxiety even before taking the first step in the treatment process, I feel like that piece actually is debilitating to a huge number of patients. We know that there are many more couples and individuals suffering from fertility issues than we ever see in our fertility clinics and its because that anxiety about perceived notion about what can happen when they see a fertility provider that prevents a large number of people from taking that first step forward. Yeah, so it’s not just about once you’re in treatment and how that’s affecting you but what’s going on even before you decide to take that next step.
[Sarah Smalley] And I think you mentioned shame earlier as something you guys have talked about on this show quite a bit and I feel like anxiety is a precursor to shame in most situations and so if your trying to work up the will to be brave enough to walk into a fertility clinic and you’re feeling anxious about it, It’s just a hop skip and a jump to a shameful narrative that is “this means I failed, this means that my body couldn’t do something fundamental that its supposed to be able to do” and then the anxiety causes you to ruminate on that. And you’re just stuck in that spiral.
[Teresa B Wolf] Now how does anxiety affect the health and fertility?
[Dr. Jamie Massie] It’s a tricky question. So the paper answer, the scientific answer is that the data that’s been done so far does not show that the level of anxiety correlates with infertility treatment outcome. Which I feel like its actually good news for people. Because one of the things I hear over and over, and I’ve seen it mentioned on your website and in your communications, is that people tend to say “If you could just relax, the reason you’re not getting pregnant is because you are so wound up in it and if you could just relax you’ll get pregnant right away.” I think that the science suggests to us that’s not true. Anxiety is a function of what you’re going through, but it is not a driver of how things are going to end up. So even though we want people to manage their anxiety, because you have to in order to successfully get through this process in tact, it’s not something you have to do or else you’re going to fail.
[Sarah Smalley] I hear that from just about every person I work with. The idea of stress and anxiety impacting their ability to get pregnant is so profound to the point where I think that the anxiety then takes it to a place that almost superstitious. Like the most practical well-grounded people become the most superstitious when they go through their infertility journey and yes, across the board I’ve heard that.
[Teresa B Wolf] What are a few things that we can do to a least help manage and take some kind of control of anxiety?
[Dr. Jamie Massie] I will say from a physician standpoint the most important thing from my end is that patients tell me right away, that they are honest about that. I think lots of times when patients are meeting with me, they put on their brave face. They’re always talking about what’s the next step, what do we need to do from here, and it becomes a very technical conversation.
[Sarah Smalley]They are surviving.
[Dr. Jamie Massie] Exactly. Rather than an emotional one and sometimes that comes across to our staff as people lashing out or being negative and its really almost never about them, its about underlying anxiety related to treatment and failures and having to keep on going forward that comes out in that way. It would be self productive for all of us if patients just felt liberated to be really open with their doctor and say you know I’m really struggling, this is terrible, I am really suffering – because then we get them directed to individuals and organizations like Sarah to just provide this amazing service to help patients get through this process.
[Sarah Smalley] It takes it back to the shame thing too I think, it would first take admitting it for themselves and I guess the bigger answer for that is that socially I think we need to normalize the process of having anxiety and the process of going into a fertility journey. You’ll notice that as soon as a celebrity like Chrissy Teigen announces that she had a hard time getting pregnant and sought a reproductive endocrinologist and all of the sudden hands in the room start to go up and you start to hear of other people’s stories and it normalizes the experience. So yeah, definitely, I think that could be the start of it to make it more acceptable for people to tell their physicians, and to recognize it in themselves that they are experiencing shame and anxiety and all of that. I think they’re in such “go mode” when they walk through the door that it takes putting one foot in front of the other, so I guess that’s the other thing is that if they’re able to check in as much as possible, just like naming what they’re going through, like this is actually really hard. I personally think of an infertility journey as a crisis state and I don’t think there’s any other crises state where we would tell somebody that it’s abnormal for them to feel anxious.
[Teresa B Wolf] Dr. Massie what would you say is the percentage of patients who admit to having anxiety?
[Dr. Jamie Massie] I would say that 30% of patients admit it and talk about it. And I think 95% of patients experience it. To what degree weather it is mild or whether it is very profound is variable. I ask about it and always during our next steps, part of that discussion includes: “where are you emotionally and how do you feel about things moving forward?” And even in that circumstance where I try to actively get people to share with me where they are, it can be a challenge for people to open up. I think the other part of it is that on some level we are feeling like we are being judged by the people who care for us. Like if we say: “This is terrible and this is so hard and I know you think I’m going to get pregnant someday, but I can’t be optimistic with you, that’s not where I am right now.” It feels really hard because it feels like they are going to abandon you and they are going to judge you or your care is going to be altered in some way because of that.
[Teresa B Wolf] So would you say that they are struggling in silence and they fear of being judged?
[Dr. Jamie Massie] Yes, absolutely. How that translates into the rest of your life I think is so profound. You are going through an infertility journey, but you also have to be a human. You have to be in your relationship, you have to be in your job, you have to be in your secondary infertility, in your family. So if you don’t deal with it, then that permeates into all those other aspects of your life and it just becomes all-consuming.
[Teresa B Wolf] Absolutely. It’s just very hard. It was hard for me to come to my family and friends and I remember being in so much shame and I had to find the closest person to me to open up and just try to talk about it, someone that would understand what you’re going through so I can imagine that there’s a lot of us that are suffering in silence and I’m just happy that we are having this conversation.
[Sarah Smalley] Yea, that isolation piece is so huge. I run groups for women that are going through infertility and I think the number one benefit from it is that they get to have each other afterwards. We’ll go through an 8 weeks group therapy and then at the end of the eight weeks all of these people have these connections that they can call, they can get together and check in with each other and all of the sudden that isolation piece is taken away because you’re in your own world.
[Teresa B. Wolf] Right, absolutely and that’s what I find so fascinating about what you do is the fact that you do have these groups where we can open up and talk about it. Those are the first steps. So would you say that fewer than 50% of the women who can benefit from the behavioral services actually receive these services? Do you think that it is something that should be offered and we can improve that number.
[Dr. Jamie Massie] Absolutely. Fertility clinics should have a behavioral health component as part of their clinic. At ORM we have counselors who work within ORM Fertility and then we have resources in our community like Sarah so that if somebody is not comfortable getting their mental health care in the same place where they’re getting their fertility treatment, you have resources that you trust and that you believe in your community and vice versa. If it’s easier for a person to have all their care in a single entity then we need to be able to offer that to them as well.
[Teresa B. Wolf] I completely agree and I’m hoping that in the future, not even in the future let’s start now. We should be able to offer that because I felt so alone not having anyone to turn to after you’re done with the treatment, and just wondering what’s next, how do I get through this? Who do I talk to? Yes it is a big deal.
So is it fair to say anxiety does not prevent pregnancy?
[Dr. Jamie Massie] Yes, I think that’s fair to say. Great news for anxious people all over the world. Not a good form of birth control. No I do not think that anxiety prevents pregnancy.
[Sarah Smalley] I think that one of the most prominent ways I see anxiety show with people going through this is something called cognitive distortions and the two that I see most frequently are catastrophizing and black and white thinking when it comes to infertility. So black and white thinking, if I have an extra cup of coffee, or a glass of wine I’m not going to get pregnant. If I have sugar, if I don’t go to acupuncture, if don’t go to yoga, if I don’t do all of these things it’s going to impact my ability, I’m never going to be able to have kids so that would be black and white thinking. Catastrophizing is I did have a cup of coffee, this is the end of the world or you know, my whole world is over, I can’t see through this and it becomes a globalized horrific event. And I think that’s really where that’s anxiety at play, that’s how it really impacts the process.
[Teresa B. Wolf] Right, are there any of your own stories that you could share with us so we can relate and to see that we are not the only ones struggling through this?
[Dr. Jamie Massie] Absolutely, I love telling my story because I love the process of normalizing this for other people. I received the health diagnosis four years ago that I had to have my ovaries removed, but I had a period of time prior to the surgery where they were going to give me an opportunity to go through fertility preservation attempt so we did the IVF and all of that and tried to do an egg retrieval and during that process I absolutely gave up sugar, I gave up caffeine, I went to acupuncture I went to yoga. I mean I did everything you know, short of like jumping back three steps in the full moon. And the amount of pressure that my anxiety was putting on me was just enormous. I was a string pulled so tight that I could have snapped at any moment and I went to a sensory deprivation tank to try and reduce my stress and like many other women I thought that my stress and anxiety is going to fully stop me from being able to do this. I did anything and everything that I could think of and in the end the fertility preservation was not successful and that was a grief that I had to navigate and work through and thank god I had an amazing therapist and that process was normalized for me and I had a wonderful partner to be there with me through that whole thing. But this is a chronic complex grief this experience. You revisit it all the time. It’s been a really wonderful thing for me to be able to do this work because it’s healing for me, it’s healing for me to be able to put this into something productive because I do think that this is a population that is so underserved and that anxiety is just controlling and add to that the feeling of powerlessness. Im thrilled to be a part of it but it was hard to say the least.
[Teresa B. Wolf] Thank you so much for sharing that. I really feel that the more we share the more we open up because I understand that there are a lot of us out there just suffering in silence and it’s hard to open up and let everyone know what we are going through. You know the more we share and if we can at least just help one person and become an ear, thats huge.
In close, what are some things that you would like women and men everywhere to know that are thinking of going through fertility treatment and experiencing anxiety?
[Dr. Jamie Massie] I think the most important thing from a medical standpoint is to find a team that’s not just scientifically excellent, but also recognizes you as an individual. And can appreciate that every journey is different and everybody’s needs are different and makes a point to figure out where you are at in all aspects of your care including throughout the entire process. Not just during times of crisis, not just during the negative pregnancy test and not just at the miscarriage but all the way along.
[Sarah Smalley] Yes, I agree. I think that supportive, emotionally well-rounded supportive staff is so invaluable. I would just want people to know that it’s normal. It’s normal for this to be a crisis, it’s normal for them to feel anxiety, it’s normal for this to impact their relationship. It’s normal for them to feel broken even though they aren’t. All of that is normal and to the best of your abilities seek out some folks that understand that so you don’t have to be in this alone, stuck in your own bubble. What you are experiencing is normal and you’re in good company. There’s a lot of us.
[Teresa B. Wolf] There is a lot of us. I want to thank Dr. Massie and Sarah for joining us today. Ladies do you have a website, social media, or a way for someone to get in contact if they want to reach out and need someone to talk to, where can they go?
[Sarah Smalley] Absolutely. I have a website – it is SarahSmalleyCounseling.com They can also reach out to me via email and I’m on PsychologyToday and TherapyDen. I encourage anybody to reach out at all times and hopefully we can be a part of their support system.
[Teresa B. Wolf] Thank you so much for being here with us and thank you to our listeners. I want to leave you with one thing and that is if you are going through a struggle and you need to talk to someone, just remember you are not alone. Reach out to us at www.giftofparenthood.org or you can reach anyone of these ladies. Let’s talk about it, let’s get it out in the open and see how we can help each other.
Thank you for listening to our podcast if you would like to get in touch with Dr. Massie at ORM Fertility, please call 425-332-5529 or visit their website at www.ormfertility.com. We hope you enjoyed today’s topic and encourage everyone to share their stories so we can help each other and deal with the emotional impact of infertility. Remember, it only takes one voice to get the conversation started. Why not let it be yours.