INSIDE REPRODUCTIVE HEALTH PODCAST

Ep. # 31 Lindsay Fischer -Transparency Between REIs and Patients: Bridging an Emotional Disconnect

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In this episode, Griffin talks with Lindsay Fischer, best-selling author, co-founder of the InfertileAF Summit, and a member of the Trying-To-Conceive Community. Jones and Fischer discuss the importance of honesty and meeting patients emotionally through their individual fertility journeys. Her unique perspective on the patient experience can help practices build stronger relationships and, in turn, the TTC community as a whole.   

Connecting with your patients is an important part of the Fertility Marketing System. Take the first step in developing your practice’s plan with our Goal and Competitive Diagnostic. Learn more at FertilityBridge.com.

GRIFFIN JONES: Today on Inside Reproductive Health, I'm actually joined by someone from the trying-to-conceive (TTC) Community. Lindsey Fischer is a two-time best-selling author of her books: The House on Sunset and The Two Week Wait Challenge: A Sassy Girls’ Guide to the Two Week Wait and is a co-founder of the InfertileAF Summit. She's the mama of a pair of boy-girl IVF twins and she is an advocate for infertility and domestic violence awareness. She spent three years in trauma therapy after leaving her abuser, making her a self-proclaimed self-care junkie, Lindsey Fischer. Welcome to Inside Reproductive Health. 

LINDSAY FISCHER: Thank you so much for having me. I really appreciate being here. 

JONES: We came to this conversation because you're at the center of a very vibrant trying-to-conceive community--one that's really active online on Instagram. We had your co-founder, Tia Gendusa, co-founder of the InfertileAF Summit, on the show a few months ago and it's a community that is real tight together, that talks with each other frequently, and I sometimes feel like where we are in the field of fertility treatment, sometimes we're not just not on the same block--we're not even in the same city. 

FISCHER: I agree with that. I think there is definitely a disconnect between the community of people who are actually trying to conceive, or have in the past, and then you know, the medicinal or clinical side of that. Something in between that we haven't quite bridged the gap of coming together as a whole community in a way that I honestly think the TTC side would really like to have happen.

JONES: You had said before that you encountered some resistance. Can you talk more about what that felt like? Do you mean a resistance to the TTC community and the field of Assisted Reproductive Technology coming together?

FISCHER: Because of my second book which is The Two Week Wait Challenge, I have been asked to speak at smaller, but some of the conferences and a lot of times the story is: “Well, we need to have a fluff piece here, like we need to have the patient perspective. We don't really want that to be the highlight, but we do need it to show that we care about them.” I hate to say it that way, but that's how it came off. Yes, totally obligatory. And so it was one of those things where it was like, “If you don't value me coming in to do this with you, how are you--where's the disconnect between that and how you're treating your patient?” If you don't want to hear their stories and empathize with them, and I get that doctors have a lot going on and clinics have a lot going on and they need to be on education and furthering, you know, whatever it is that they're trying to advance, but you can't not look at this side of it, especially as it's growing and not see the value of the connection if that makes sense. 

JONES: There's really very few meetings where we even have a patient come in to speak. I have seen it before MRS has done a good job of that in the past. There are some meetings--the second largest meeting in North America is the one that happens on the west coast every late March and there's no patient relations or practice management programming there. And there's one that's going to happen in California over the summer and there's no patient relations programming there. For some, maybe they're so focused there they might specifically be focused on donor egg or vitrification or there some meetings that might be reasonable, but I think there are other meetings where we're just lacking for that and even ASRM, which is the biggest meeting for fertility treatment in North America, I can't say that I've ever seen patients come in--I can't say that absolutely because there have been, but usually it's because they're working on a particular abstract or they might be working on something else. But in terms of understanding how these individuals come together as a community, that I think we're lacking for. So you have come in you and Tia and others like you have filled that void on their own cases. 

FISCHER: Okay, I think you know we definitely see a need for community and to be able to find one another to support each other and it's not even about like, what treatment option you're going to choose or you know, if you have a specific question about where you are in your journey, it's more about the emotional side of it and finding the validation to make your own decisions and feel empowered in those decisions, as opposed to having a talking head say to you, “Here's the statistics. This is what we would recommend.” But then feeling like, “Okay. Well, I still have six options to choose from.” It gets scary and overwhelming and so when you've got people standing next to you that are like, “Yes, it is scary and overwhelming, but let's look at the options here and find the most empowering avenue for you.” That's the sort of conversation that we're having at this point on the patient side and obviously, with the way that the Summit-- the results of our first Summit were wildly successful. I mean, it should be something that both sides are looking at as like a key, like this is what needs to be happening now. We need to be having these conversations and not overlook the patient perspective.

JONES: Part of the reason why we put “bridge” in our company's name is because it would be great if they weren't all happening one side over here and one side over there. And I think there is a vested interest in the clinics appearing at events like yours are participating in the community like yours, as well as inviting folks from the TTC community to our meetings and speak in our forums because they feel misunderstood, too and often times they are. Nurses get abused, they have a crazy workload. Doctors have so much information, so much to keep track of, and the expectations for them are often really unrealistic. It's like fine. But you’re never going to have that understood, if you're keeping all of your communication and gathering and networking over here on this side of the neighborhood and not reaching out and mixing with the folks on the other side of the neighborhood. 

FISCHER: I think it's an interesting kind of place that were in currently and just business in general that one of the things, the talking points, the big selling points for people who are trying to be leaders is emotional intelligence. Right? We want emotionally intelligent leaders, and if that means you have to tap into your emotions. And so a lot of times when we talk about the opposite side the medicinal side, there is no connection there. The emotional intelligence is seen as like, yeah, I agree with you. I have seen how nurses are treated. I believe that they have incredibly difficult jobs and the doctors are constantly working. I mean the expectations that people put on them are insane. However, if they don't kind of say that or present it then the patient doesn't realize that either and so their expectation is “I'm spending x amount of money. I want this service and I believe that I'm supposed to have success.”When ultimately we know that that isn't necessarily something that always happens. But it feels like there is radio silence from the clinical side on that and saying, “Look, we know.” If they would just come forward and be honest about that, or transparent, or you know talk about the struggles that they have with sort of showing up in that capacity, I think that this other side the patient side could be more supportive, if you will. The communication needs to go both ways. And I think it's lacking on both sides and I hope that eventually, we can catch up on both ends to have a better realm. If you look at a lot of the REs that are on Instagram or social media that are popular, it's because they talk about personal things, right? It's because they share their own stories and they do it in a way that's vulnerable and that's how they're connecting with people and getting these really amazing bonds with the people that are coming to see them. 

JONES: It’s the perceived mansion on the hill, right? I come from a lower middle class Irish Catholic family where you know, it's like businesses bad, wealthy people aren’t to be trusted type of thing. And I look back at why my family had this story and it's just because when you feel so disconnected from someone, you fill in the blanks. And when it's like, “Well, we don't see these people riding the bus. We don't see these people at the public pool. We don't see these people pumping it out here with us. Therefore, they came to wealth to sort of magically. They only obtained it because they just keep it themselves.” And that's the narrative that we had. Sometimes that's probably deserved sometimes it's certainly not deserved, there's a lot more there. And I think the same is true for if we're not present, meaning the REI Community the Assisted Reproductive Technology field, in the community of patients. Then we are just leaving an entire blank sheet for people to fill in with however they feel. 

FISCHER: For me and I can't speak for everybody, but I think what it boils down to is it appears as a lack of empathy. What you're looking at is, “If this person doesn't care about me, then why am I going to invest in them, or why am I going to be polite when I go in for--they don't care about me. I'm just a number.” But if this side shows empathy for this side, I think I believe that the TTC Community could be more understanding of what's going on if they were shown more if more of the background was visible. And so that is really what I'm hoping for is his this empathy. If somebody looked at me--if a doctor looked at me while I was sitting while I was still cycling and said, “I understand where you are. I see this every day. I know how difficult this is for you. I know how strenuous it is financially, or emotionally, or even physically.” Give me something so that I know that I'm not just a number and show up transparently so I don't feel like you're feeding everybody a different line. We're going to have better conversations. 

JONES: I liken it to: no matter what you were in the business of, wouldn't you want to be central to the community around that? In other words, if I sold boats, I would be all about wanting to be with the clean water folks.Like the people-- the Lake Erie preservation group, The Lake Ontario Water Keepers Association, people that are just going to the beach. I would want to be involved in everything central to the lake, because there is an inherent value that dates all the way back to tribalism. If you can provide for the tribe, some sort of value, than your status in the community goes up. And so if we as fertility treatment providers can provide information, value, empathy, empowerment, sometimes just straight up entertainment and human connection, our status within the community goes up, that only serves to benefit us in this case. 

FISCHER: Yeah. Yes, preach! I think that it's that human connection piece that is truly missing in a lot of ways, but I agree with you the benefit on the opposite side is that it definitely shows your value more than being able-- a percentage is great, you telling me that you have a 75% success rate in September or whatever month is fabulous, but it doesn't tell me who you are. And that's really what I want to know. 

JONES: I want to come back to that because that's a topic that I would like to explore some more, but to the point of adding values, I very often think people have it reversed. And I see this sometimes when I talk to people about RESOLVE. Whenever we work with a new client, I try to get somebody involved with RESOLVE, or at the very least, a professional membership is way under-priced in my opinion, a little bit of help with advocacy, letting every patient know, “Here's where the support groups meet. Here's some blogs or here's some resources.” Letting them know about RESOLVE or InfertileAF Summit and I have something about others. And I’ve had certain people say to me, “But what are they going to do for me?” And their perception is that there's some large fertility groups at the top that pay for larger sponsorships and that, therefore, any of these larger communities are catering to them. I think, again, when we serve the community our status community goes up. So it's not saying, “What are we going to get from them?” It's saying, “Okay, you've already congregated the community in some way, I'm going to come in and over-serve the community so that, in turn, generates more--in this case--more word-of-mouth patients, but a higher yield of people of favor, of having a better position simply because we're the ones serving. I think that's a backwards point that we messed this up a lot. 

FISCHER: You know, it's just good business really if you want to boil it down to that. Like what is somebody doing for you all if you don't show up, there doing nothing for you, but if you're actually there then you're getting something out of it. You're getting face time with people who may actually need services. I think the people at our Summit--a ton of people constantly walking around to all of the vendors and all of the tables and I honestly, there was never a moment where I looked around and saw one over-utilized versus another. So it was one of those things where it's like, “Yeah, if you pay less you may get less but if you don't pay you’re getting nothing.”

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JONES: I want to jump back to because I don't want to forget it--you mentioned success rates and patient perception of success rates and I want to explore your knowledge on that some more. Have people caught on that it's really unreliable to take anyone's version of success rates? I think one clinic that I had worked with for a while, they kept jumping up in their state.  But with the 2015 or so number, they had climbed up to #4, and then the next year, they had dropped something like down to maybe 15 or so in a state with 30 or so clinics, and their success rates, it drops, fifteen percent. And another clinic that had been completely off the map had jumped way up and whoever was number one, I remember was an independent fertility center, they had fallen way down. Do we really think that all of a sudden, this lab, this staff, that was really good or this one, that was less good all of a sudden just jumped around. And this happens so frequently, or is it just--? This reporting is totally unreliable and especially if we're getting from whoever is curating the numbers to tell whatever is their best story. 

FISCHER: You know, it's unfortunate. I think that these statistics are used in the way that they are because it's playing off of people who are just now getting involved--people that are just now learning that they need treatment of some sort. And so that emotional vulnerability that goes in when they see these numbers and haven't done the research, will hop on to it. But I think that those of us who have been around and present in the community long enough know that it's total BS, right?

JONES: You're an OG, but to the new people on the block, do they know this? 

FISCHER: I don't think that they do and I don't like to say that because it makes me feel like I'm giving people the opportunity to really use those. But I think that one of the disadvantages of using those numbers and statistics is that when people find the community, the OGs will step in and be like, “Wait a minute, let's think about what you're using here.” Because you know, like you said, a year ago this clinic was over here and now all of the sudden they're number one. Is it really that they are that much more successful? Or is it that they're finding a way to make these numbers work for them and they're showing one little piece of the actual puzzle here? So, you know, clinics are becoming--there's a disadvantage in using those if they don't watch what they're doing because there are some of us who are paying enough attention now. But I don't think that somebody just walking into infertility right now knows that those numbers are false. I think they're grasping at anything to give them hope and when you see a success rate that is really high, you gravitate towards it. But once you've been in for a minute, you kind of take a step back and go, “Okay. Now, what is this actually about?”

JONES: There's two narratives that run parallel in the field right now and I want to see where you think about this--I would love to have somebody on from the lab and ask them about this. But one is that, “My success rates are the best. Everybody else’s suck,” is one narrative. And then in parallel, it's also, “Well, the labs have gotten so good all around. We're almost all growing to Day 5. We're all using vitrification and success rates have totally evened out in the last 10 years.” From what you can tell, do you feel a certain way, based on the patient perspective, to buy one or the other of those?

FISCHER: I mean, I think both of them are kind of talking points that doesn’t seem very sincere to me. Like yes, technology has a lot to do with this and research, and the developments, and all of these amazing advances that we have, of course they help success rates. However, I think there is this underlying conversation that won't be had because people don't want to have the hard conversation of: there are some things that we can't control at this point. And so from the patient perspective, when you're saying, “Oh well, everybody's so advanced, so we're all at equal playing levels or oh, our numbers are great.” The bottom line is if your body is not going to do it, your body's not going to do it. Do you know what I mean? Like if your eggs, or if the eggs don't fertilize, or if there's male factor, whatever it is, there are scenarios where sometimes it just can't be overcome. Whether it's one cycle or two cycles, maybe the next one is great. But the bottom line is we need to be having that conversation, too. The reality of these successes are fabulous, but there's still this 10% or 15% that aren't successful that we need to learn how to present that and be very real about it, but also give them an avenue to sort of process it and then figure out where to go moving forward.

JONES: When you talk to patients in the community, do you feel that they are having expectations set properly? Or are there some folks who may not have had success that didn't realize that there was a decent probability of that?

FISCHER: So there's a narrative that actually happens on our side where--and this is what Tia and I have been working really hard to sort of like breakdown because it's totally dangerous and unhealthy--people believe that if they continue to cycle long enough, they will have success. So maybe your first round doesn't work, maybe it takes three rounds, but you'll get there right? And I think there are doctors that will present that information to people, but I think mostly it's this idea of, “Don't lose hope. Keep going, you'll get your baby,” and that isn't always true. And Tia is a perfect example of that: that she chose to walk away child-free after her rounds didn't work and she decided enough was enough. My husband and I had a limit. It's easy for me to say that we would have stopped at that limit, but we never got there because I found success. And so it's one of those things where I genuinely believe that the patient perspective is, “If I fight hard enough, I'm going to get the end result that I want,” and not the reality that there are people that don't have success because that is not the picture that is painted for anybody. When they walk into a clinic, no nurse, no doctor looks at you and says, “You realize this might not work, right?” Because then, they're going to lose money. So like it's a conversation that needs to be had. I would personally like, looking back if I decided to go back and do treatment again, I do really like my doctor, but I think that I would really value a conversation with somebody and really respect them if they looked at me and said, “You know, just because you had an easy success the first time doesn't mean it's going to be easy again,” because that's what I need to hear going in so that I'm mentally in the right place to cycle.

JONES: And when that happens--I read the fertility IQ reviews, I talk to people. When that happens, there are people that are like, “They just wanted my money, they pushed me through it. I had no idea that there was a result that was not going to end with me having a perfectly happy, healthy baby.” And I could see how that perception can be taken. I also see that--I think a lot of it is coming from a supreme confidence in how far the medicine has advanced and, maybe to a point where we're not totally appreciating it, that still high chance. So I hear people say all the time, “We can get people pregnant. We've got the technology, we can get almost anybody pregnant.” It's like, okay, well, let's unpack that anymore. “Well, yeah, if you know, if you do up to three cycles and you're under 35, and you have this diagnosis, you’ve got an 80% chance of getting pregnant. 80%, meaning--and that's that's if you're doing three cycles--meaning 1 in 5 is not getting pregnant from that. If somebody said to us, “Hey Lindsay, Griffin, and three of your friends get on this boat. One of you is going to drown or there's a one in five chance that this boat is going to sink.” There's no way anybody's getting on. And I'm not saying that that is the same decision calculation for going through with IVF, but I think it's really important to realize that, “Hey, this is your probability. Probability is good. There is this chance you need to consider.” Ultimately what someone is deciding is that they leave everything on the table--or did they take anything off the table to put it all on the means of getting to their goal, but I think that helping someone assess that is more substantive than, “Here's the miracle that you might not result in.” 

FISCHER: Ultimately, and this is me just being really straightforward, what they're doing is selling a lie, whether or not they want to do that . Maybe it's not intentional, maybe their intentions are great and they do genuinely believe that they're going to have success, but there's still these people that don't have success and if you don't tell people about that, that's problematic. I get where you know, you don't want to look at somebody who's getting ready to go through something that's really difficult and very stressful and say, “By the way, it may not work.” I get why they want to avoid that pain, but the reality is that pain needs to be brought up so that people can process it and make the best informed choices. People want to talk about informed choices in the sense of, “Here all of your options while you're going through treatment. Here the best things that we can do. Here's the advanced technology we have,” but they don't want to actually talk about the reality of the real statistics that people don't have success. And so, you know, you're not giving people the full picture if you're not having that conversation and it is what it is.

JONES: I love your point that whether they intend to do that or not, that's what's happening I’ve experienced this in my own business where I would--I never ever sold people this idea of “give us some money, we will do some magic Facebook and all of a sudden you'll have some more new patients.” And we even have done things where it's--you could almost summarize it as tha,t but I never sold that. But people would still just look at me and be like, “I get you're the other social media guy, you're gonna do the social media magic and wave the wand and all of a sudden we're just going to get more patients and not have to do anything.” I never said that. I never tried to lead them to that conclusion. But what I learned is that I have to diligently and emphatically slow people down, walk them through a process. And this is what you're coming to me with, this is how it actually works and breaking the process down so that when they are actually far more likely to have success, their expectations are coming to me with over here on the far end of the spectrum and I need to correct it, even if--that we might not be doing that intentionally with miracle babies and just all like, baby, baby, baby, but if we're not doing anything to calibrate that excitation we're doing by default. 

Lindsay, I feel like I could talk to you for four more darn hours. If you're awesome person to connect this part of the gap that we have on the treatment side of the field to the patient community, especially the online patient community. We'll have to have you on the show again. For the time being, how would you want to conclude? Anything that I didn't ask you about or anything that you want to field to know about the online community? Or how we can bridge the gap or correct perceptions? 

FISCHER: So I think what's really interesting is, you know, I was pretty transparent, very honest about the patient perspective from my own experience and what I've heard from other people--I don't think anybody is sitting on our side going, “They’re, you know, they're dishonest and they're lying to us and it's bad.” I think what they're saying is, “We want to hear more from you and be honest.” So even though I've been very direct and sometimes that might come off as aggressive--it's not. I'm not mad at anybody. I don't think they're mad at anybody. I think we just start looking at it like times are changing! Every sort of business in the world is taking on this new idea of transparency. You need to be vulnerable, you need to be honest and sincere, and reproductive assistance also needs to do the same thing more so maybe because of how important how important this goal is to everybody. Like this is a lifetime thing that people assume they're going to have. We assume we're going to have families and if we can't have them, then we need the doctors to be able to say that to us and not in a hateful way, but in a compassionate and empathetic way. And so that's what I think that's where the community is really focusing attention is the people who talk to us like we're humans and have that human connection that you and I talked about, are the ones that we kind of respect the most. So that's a perspective shift that I would really like for people to consider after listening to us.

JONES: Lindsey Fisher, co-founder of InfertileAF, well said, and thank you so much for coming on Inside Reproductive Health.

FISCHER: And thanks for having me!

You’ve been listening to the Inside Reproductive Health Podcast with Griffin Jones. If you're ready to take action to make sure that your practice drives beyond the revolutionary changes that are happening in our field and in society, visit fertiltybridge.com to begin the first piece of the Fertility Marketing System, the Goal and Competitive Diagnostic. Thank you for listening to Inside Reproductive Health.