Inside Reproductive Health, Ep 17

Life Beyond a Baby: An Interview with Tia Gendusa

On this episode, host Griffin Jones talks to infertility influencer and advocate Tia Gendusa, the co-founder of the upcoming Infertile AF Summit on Saturday, April 27, 2019 in Rosemont, IL. Jones and Gendusa discussed the value of the infertility community on social media and in the blogosphere as well as the importance of recognizing that there is success to be found after infertility.

Griffin Jones: Today, on Inside Reproductive Health, we have a special edition for National Fertility Awareness Week. I’m joined by one of the most influential in the infertility community on Instagram and the blogosphere. Her name is Tia Gendusa. Tia and her husband spent six years trying to conceive both naturally and through assisted reproductive technology. Went through five IVF cycles, did five retrievals total?

Tia Gendusa: Five cycles, yep.

GJ: Experienced miscarriage, experienced the range of services through ART, including PGT, now speaks to the infertility community, writes for them professionally, is even starting a summit that will take place this National Infertility Awareness WEek in Chicago, speaks about child-free living and the infertility journey and women’s health. Ms. Tia Gendusa, welcome to Inside Reproductive Health.

TG: Hi, Griffin. I’m so thrilled to be here with you.

GJ: It’s pretty cool for us because you’re the first non-field side person to be a guest on the show, meaning we’ve had people that have gone through the war, but maybe they’re involved at a professional level of patient advocacy. You are really somebody that I consider to be one of the influencers of the infertility community. I think that’s such an alien space for so much of the people inside the field. Do you feel that way?

TG: I think so. I think that… I don’t have a medical background, I don’t have the ins and outs, and I definitely didn’t start my career in any terms of counseling or women’s health or anything like that, but it just sort of evolved naturally, in terms of being able to reach other women, just through speaking with them and taking the time to get to, y’know, learn about them, and learn what makes them tick. It’s funny, because prior to infertility, I was a very selfish person. I spent a lot of time, y’know, focused on me and how I could make my life better. Those tools that I learned through that along with the empathy that comes from failure after failure has sort of given me a platform that reaches women on a more specific, intimate level. I’m forever grateful for everything that has evolved from infertility, even though we didn’t end up with our plan A option, to become parents.

GJ: It’s just amazing to me how robust the community is on Instagram and on Facebook and in the blogosphere, but especially on Instagram. I’ve been talking about it in the field for years, and sometimes I feel like people don’t believe me, and I have to shove my phone in their face and say look-- look at what your patient community is saying, look at who they’re talking to, look at what’s important to them, because it really is the public square of the community and I just feel like so many of our clients and so many of our prospective clients are divorced from it. They could really be solving a lot of the communication problems they have with their patient population if they embraced this side a little bit more and built relationships with these influencers and advocates.

TG: Absolutely, I mean there’s definitely a need for more mental health awareness, there’s more need for, just the ins and outs, we’re not looking to be numbers, we’ve said that a million times over. That was definitely one of the questions we answered when we were starting fertility treatments ourselves. We’re not looking to just line up with everyone else and get a cattle herd of women and men out, we’re not looking for the moneymaking schemes of the world. We’re looking for the nurses that work within the practices that reach out to you at the eleventh hour because of a shot, we’re looking for not only discounted meds, or more coverage for the costs in general, but just the secondary side of this. Within the fertility clinics, is there an option for easier access to counseling? I realize there’s just a huge need for readily available, even if it’s over the phone or some sort of… outlet that way to connect with infertility specific counselors and therapists and other people in other support groups. It takes a lot of initiative from women like me and my cofounder Lindsay to find the time to start things that can group people together in real life versus Instagram is definitely a big platform to start the conversation, but there’s so much you can’t say within those squares. There’s definitely a human-ness that we’re missing in terms of how we go through the IVF process, how we go through these fertility treatments, and still feel like we’re people.

GJ: When you were going through treatment, how did you find support?

TG: I’ve always been rather open about my journey. I was talking to friends and family and I realized that the bulk of my real-life friends all had kids, all found success, never went through infertility— or never talked about it. So through a mutual friend, I started reaching out on social media like Instagram, I always felt Facebook was a little bit combative. I found Instagram was a little more generic. You could be anonymous, you could be completely open- however you felt that way. I started sharing, i started to talk through my cycles. You gain so many perspectives for similar women who were walking through similar paths, and it just took off from there. The communities, some people have tons of similar followers, some people have connections all over the place, and more recently, since I kind of decided to walk away from treatment, I’ve been having my focus more to reach out to find the women and men who have also walked out and try to help them find their power after infertility. It is an unfortunate, shameful stigma to walk away.

GJ: Did you get any of this information or connection for support in your groups, peers, counselors, forums from your practice when you were going through treatment?

TG: In a way. It wasn’t presented to me as like, you should really consider this while you’re going through treatment. I actually learned a lot about yoga practices and acupuncture through the community, from other women who were going through this kind of stuff, ‘cause maybe they’re going to a smaller clinic. I actually ended up going to a bigger box clinic, just on a whim. It wasn’t something I’d researched thoroughly, but it wasn’t until I had my miscarriage that my doctor recommende that I seek therapy from a specialist from the infertility community. Unfortunately, I wasn’t in a space to have a 2-3 hour round trip commute just to go to this specific therapy session, so I had to do my own work to find some sort specific family counselor that could help me through the tough times right after the miscarriage happened.

GJ: Are you in the city of Chicago, or are you further out?

TG: I”m about an hour outside, so anything that was city-specific, I would have to do that commute round trip, and it was always during business hours. I have a full time job-- there’s not a lot of opportunity for me, and if there is, I didn’t know about it.

GJ: I think that’s another reason why people seek support digitally so often, because if you can’t… that’s two hours right there, and you’re only an hour outside of a very large city, but there are people in the middle of Montana or the middle of Maine somewhere, and having access to someone in their immediate vicinity is sometimes nearly impossible.

TG: Not only that, but at that point, I was so irritated that we’d spent so much money and time and resources just trying to get to the end result, that-- pardon my language-- when it all went to shit, the last thing I wanted to do was try to coordinate schedules and pay for another therapy session that’s supposed to be helping me. I wasn’t in the right mindset to coordinate three to four hours of my time every week, it was not worth it to me to try to figure out that specific hub.

GJ: So then you started sharing your story, you started doing that on social media, writing about it, there are so many different segments of the infertility community. There are people that have gone the adoption route, there are people that have talked about success after IVF, there are people that pursue faith-based route, you talk about the child-free segment of the infertility community, and now you’ve started the infertile AF summit. Talk to us about how that got started and what that message is and who it’s for.

TG: So, I’ve always written. I wrote about my whole fertility journey. I always blogged, I always wanted to document it. It was sort of like my own personal journal, and I was always happy to connect with people that got it. It was always something like if someone did a google search, I wanted to have something written from my perspective that makes sense to other people. From there, I started to connect with more and more women over Instagram. One woman in particular I have followed for a few years and she’s followed me back. Her name is Lindsay Fisher, and she’s the cofounder with me for the Infertile AF Summit. Fun fact, we’ve actually never met in real life, so that’s kind of an interesting thing that social media has brought us together remotely. We’re able to have such a good business partner aspect to making the summit a success. The whole gist for how this thing started in the first place, I just love retelling it. The goal was to get together with a couple other infertility warriors in the area and have a quick dinner. Sometime in the summer, let’s just make it casual. I must have had way too much coffee one morning, because I reached out to her after she said that, and I said, Hey, what if we did a summit? A dinner or a group of women where we could speak and talk about these different aspects. Then she challenged me, and she said yes, what if we made it bigger. We were thinking 50-60 women, no big deal, something we could manage, especially in the short time frame. We went from July to the end of NIAW, because that seemed to fit in the fertility timeline, especially for promotion and excitement and things like that. We sold out the first summit in seven days after ticket sales went live. We had sold out 75 seats, and quickly scrambled back to the hotel we were working with to double capacity. And here we are, two weeks out from the summit at the time of this recording, and we have completely sold out the secondary venue. We’re housing 140 men and women from all over the US, we have people flying in from Canada, you name the state and they’re coming in. The goal and the mission for us is to break down the taboo surrounding all the really terrible parts of infertility. Not just the success stories, but the stigma surrounding success and how women feel alienated once someone they know finds success. How do we manage those emotions? How do we deal with, you know, when you feel like raging and setting fire to everything around you after a miscarriage? How do you deal with walking away from fertility treatments? How are we empowering ourselves to embrace this disease instead of wanting to minimize ourselves. We’re trying to break down the labels and all of the mental health issues surrounding infertility. The biggest thing is that although we do have corporate sponsors, they are not the highlights of the day. It’s all about the patient perspective. AAnd it’s everything from persons of color to the easy route to the child-free route, donor eggs, surrogacy, we have everything trying to get covered. Just so that we have perspective from everyone. So that everyone feels that they’re involved, validated, and equal in this summit.

GJ:I just want to reiterate that because sometimes I feel like I’m talking to a wall. So if it sounds like I’m on a soapbox right now, I am. Sometimes I face so much resistance from inside the field about embracing social media and embracing the community and there’s so much skepticism for lack of wanting to more deeply understand or wanting to practice some of the new ways of reaching people, and here you are, one person in the community that builds a following because you were writing about it for a long time, because you were connecting with other people, you’ve got 150 people to come to this one place because they want so badly to be with other people who understand what they’re going through, that they have things in common with.

TG: Exactly. That’s just it. We were nervous to begin with, to set our expectations to higher than we thought we could manage, because we didn’t know if people would not only be willing to pay for a ticket, but pay to fly out, stay in a hotel, there’s a lot of cost behind this. The cost behind this especially when a lot of people are still cycling, they’re currently pregnant, they’re trying to budget for babies, they’re dealing with careers, and everything else going on with this. The response just blew us away. Not only are women and men willing to come out here from all corners of the US, all corners of Canada, there are people who would like to come over from the UK, from France… we’ve had all kinds of outpouring. It’s insane to think that… we knew we were doing something different, we knew it was unique, but we had no idea the response we were going to get from this. There is clearly… we’re clearly on to something. We’re clearly creating something that’s not ever ever seen in the US. I mean, the need to have the patient perspective and put hte patient first and validate that this disease is not going to take over our lives and no matter how the outcome is, it’s good. It’s a good stepping stone to create a bigger, better life. That’s the whole point of all of this. There is success to be found above and beyond whatever happens with infertility. It’s just a blip in our life to be celebrated and embraced, not to be minimized and not to be ashamed for it.

GJ: I’m.. wanna give the disclaimer, which is Fertility Bridge is one of the sponsors of the Infertile AF Summit. We’re doing that because I’m putting my money where my mouth is, I’m sending two of my team members, we’re creating some cool things for some of the attendees, some tiny little gifts that people will hopefully find cool. But we’re doing that because if you’re not relevant to this community, then you’re not relevant in this part of our space. I don’t think that can be understated. I think people have thought for a long time that this social media or this community or it’s just sort of a nicety or it’s a tiny little subculture or it’s something apart, and it’s quickly become the face of who our patients are. If we’re not participating with places like with events like the INfertile AF Summit or if we’re not talking with the bloggers or influencers or on Instagram, then eventually we’re just not talking with our patient base.

TG: Exactly. And you can go to a million different conferences and learn about the latest medical breakthroughs or you can just go talk to your doctor and he can give you all the stats and details and stuff. WE’re not here for… really… that’s just the nuts and bolts of going through the treatment in the first place, or even considering it. That’s not our job to break down the medical portion of this. Like I said, the goal of every aspect of this is to walk away feeling so empowered that you want to share your story. If you’re in a tiny little town in the middle of Arkansas, and you feel that nobody understands you, and if you wear that title of infertile as a badge of honor as opposed to something to feel ashamed about and swept under the rug. Just as women and men celebrate how quickly they found success with pregnancies and things like that, we should be able to say, you know what, I did this, this, and this to make my baby, or I didn’t make it, I had the miscarriage, I’m resliant, I walked out of those ashes and I started doing this whole different life change. The whole point is we’re supposed to take this terrible thing that happened. Everybody has trauma, a lot of people- this is their trauma. Infertility is their trauma. And be able to stand on that and launch themselves into something better. If that means that we need to start doing more coaching, more training, things like that, get people up and running so they're able to work with the men and women showing up today, that’s what we need to do. This first summit is just the stepping stone to bigger and better things and we are looking to not only double capacity moving forward, but to branch out as far as we can reach.

GJ: For the listening audience, I want to pull out something that Tia said, which is that being a part of the infertility community is a badge of honor. Very often in our space, I think we contribute to this self-fulfilling stigma around fertility. I’ll show examples of this and exactly what you just said, there are people who want to be proud of the community that they belong to and the people that they have found so much support from. And I will show people examples from Facebook, from INstagram, sound bytes of what you said, and people will still look at that and say, People don’t want to talk about it. They don’t want anybody to know about it. And that’s very often true, but how much of it is because we’re contributing to that self-fulfilling prophecy? I want to point that out, because this entire summit is happening in the face of what we would have otherwise said that people want to sweep under the rug. I think the evidence is clearly mounting to the contrary, that people want to have this human connection and many people are willing to be perfectly public in order to find those peers, so… Tia, I’ll let you conclude with your thoughts. Anything I didn’t ask you about or anything you would want to share, knowing that most of our audience is practice owners, physicians, and practice managers, what would you want people to know about the infertility community at large or the Infertile AF Summit or anything else you’re working on.

TG: I mean, I would think that we want the real facts. We want the real information. Unfortunately, there are a couple sound bites that you hear all the time, things like never give up, or just try one more time, or just do that, just do this, but maybe in your heart of hearts, you either need to stop just trying every month with simple OPKs, maybe you do need to take the next step to fertility treatments, maybe you need to walk away. Maybe you need to consider alternatives like adoption or donor. Every time we switch gears it becomes a very scary step because it’s unknown. You’re taking another leap of faith. And the idea that you know I loved the fact that my doctor told me, I already knew I was stopping, in my heart I already knew I was stopping, it was very refreshing for him to just say, you know what, I don’t want to take your money anymore. If you’re gonna try… it was never in our hearts to consider adoption or donors, so he didn’t even want to see me back at the clinic anymore. He was like, look, we’ve done. You’re golden. I would never take your money anymore just to keep trying alternatives that I know and I think you know are never going to happen. I think it was sort of refreshing and kind of like a nice closure to hear that from someone who has done this so long and could be considered a moneymaking scheme in a way, just to know that I’m ok. Even if I walk out this door and never look back at another baby again, I’m ok. And I think that’s kind of the consensus is the baby doesn’t make everything perfect. The family doesn’t make everything perfect. If you are struggling internally, mentally, that’s what you have to work on. That’s what it’s about. Everything above and beyond, whatever the outcome is, if you do grow your family, if you do have the baby or find adoption to be successful or anything else, that’s great. That's just the cherry on the icing of a beautiful life. But if your life, your mental state isn't very good, that’s what we’re hoping to work on and work with our guests for the summit and everything else. That’s why I’m on social media talking to people in the first place. It’s more-- it’s more than the baby, it’s more than infertility, it’s more. It’s so far beyond that, there’s success to be found in all aspects.

GJ: I think it’s so important that we in the field have close relationships with you, wiht people like you that are advocating and connecting people in the infertility community, because there’s no excuse in a 2019-2020 world to be two worlds apart where right here and there’s so many different interests and anxieties and concerns and goals and aspirations from the infertility community. It’s as diverse as any community, and in order for us to be able to properly serve them, we have to be in communication with them. Tia, thank you so much for getting these people together, for speaking publicly so that people can connect with each other and thank you for coming on Inside Reproductive Health.

TG: Awesome. Thank you so much, Griffin, for having me.