NIAW Feature: Finding a Voice

Jane Jolis captured by photographer, Alexis Mera. Shirt design by Kayla Kleinman.

Although National Infertility Awareness Week (NIAW) has completed this year, I thought it was important to close out the week with Jane Jolis’ powerful story of advocacy. It’s a message that we should carry with us all year long. Jane reminds us that nothing is promised, including a baby, and that when we listen to inner voice and advocate for ourselves, we are set up for success to arrive, and confront the root of the issues that may be standing in our paths to parenthood.

However nebulous and out of our control this journey is, using our voices to advocate for ourselves is paramount. Jane and I discussed that If something doesn’t feel right, it probably isn’t. There is something to be said about following our gut after all…

Jane’s story

I’ve always wanted to be a mother, ever since I was a little girl. I was the three-year old stuffing my shirt with pillows to “play pregnant”. So it came as a particularly painful shock when, after six months of trying, my husband and I learned that we should try IVF. I have diminished ovarian reserve, and my husband, low morphology/motility. We skipped over IUI and went straight to IVF.

Despite our challenges we had success in creating healthy embryos right from the start. However after transferring a total of four in the span of one year and having no success, we realized that something was wrong. I had to push hard and advocate for myself in order to have the laparoscopy which is ultimately the reason I am now a mother.

In December of 2017 I had the surgery to uncover suspected endometriosis, and not only did they find endometriosis but they also found that both of my (Fallopian) tubes were damaged and had hydrosalpinges. Hydrosalpinges meant that fluid was leaking into my uterus and could be toxic to the embryos. Damaged tubes also accounted for why I’d never been able to get pregnant naturally.

My Fallopian tubes were removed and after a canceled cycle, heartbreaking in its own right, I did my fourth IVF cycle and a fresh three-day embryo transfer, ultimately resulting in the birth of my son, now four months old. Although my situation turns out to be somewhat rare given that nothing ever came up on any scans indicating that my Fallopian tubes might be damaged, it speaks to the fact that if I hadn’t advocated for myself, I am not sure how long it would have taken, or if we would have been able to tackle the problem directly.

Your High?

My true high was the birth of my son, and still is. Also just seeing that first positive pregnancy test with a strong line was incredible. However I’d say another high, as crazy as it sounds, was learning that my tubes were severely damaged, and that they’d likely been impeding my success all along. As sick as that sounds, when you’re deep in the darkness that is unexplained infertility and IVF, any answers are positive because it may mean a solution to fix it.

Your low?

There were honestly so, so many. Every failed transfer was a huge low. The lowest was probably after my second transfer when I was in fact pregnant but lost the pregnancy after only a week or two, (a chemical pregnancy). I’d been watching the HCG rise, but not enough… and I spent the worst weekend of my life obsessing over (pregnancy) pee sticks and texting pictures to my doctor. At one point I found myself on the bathroom floor at 3 am surrounded by sticks. My husband had to physically come and remove me from them and from the bathroom. I was a wreck. Watching the HCG rise but not ultimately rise enough was one of the slowest tortures that I could ever have imagined. I truly felt broken after that, and had no idea how I was going get past that (moment).

Do you have a silver lining?

This experience has led me to build a fertility coaching/advocacy consultancy as I feel called to work with women and families struggling with (in)fertility. There is such a need to support those in the deepest thick of this who are trying to navigate the darkness with no end in sight. I can relate to that feeling of sheer panic and fear because I have been there. I’ve realized that this is the work I’m meant to do, and I’m working to build this business. 

Do you have any words of wisdom?

Stop trying to pressure yourself to “stay positive.” This was the hardest part for me; trying to maintain hope and optimism when all I felt was panic and dread. Sometimes you just need to feel your feelings and lie in the darkness and cry. And that’s okay. You will eventually make it to the other side, but that “other side” may not look the way you’d originally thought it would, and that’s okay too. Letting go of maintaining a falsely positive outlook was integral to my survival (during the journey).

There were many times that I thought I would never be a mom, but had I felt that my doubts were further holding me back from getting pregnant, it would have made me even crazier. The truth is, feeling good and relaxed is ideal, since stress (during IVF) is real. If you don’t always feel positive, don’t beat yourself up over not feeling that way. Whether or not your attitude is 100% positive all of the time is not going to be what does, or does not get you your baby.

Jane lives in Brooklyn with her husband and four month old son. As a direct result of Jane’s experience, she is currently building an (in)fertility advocacy and coaching practice. Please stay tuned for details or reach out if you would like to be connected with Jane.

Redefining the Conversation about Infertility

Fertility Warriors from L to R: Andrea Syrtash, Anthea King–Pascual, Jane Jolis, Nathalie Carpenter, Jennie Monness, Rebekah Rosler, Stephanie Rapp. Photo credit: Alexis Mera.

I have thought a lot about the word infertility. It sounds like such an ugly word because there is so much judgement (including self) and lack of awareness around the subject. Even for those embarking on the “journey” there is so much that is unknown. Although the science around it has come a long way, there is still not a guarantee that it will find the underlying cause, let alone solve it to produce a child. 

The word infertile goes against our very basic function as humans to reproduce. And if we can’t do that, we may admonish ourselves for not being “normal” or having tried hard enough, or perhaps not trying the right way (whatever that means). There may be shame, embarrassment, guilt, fear, frustration, jealousy, and, and, and… Societally, we have been taught that all of these emotions are bad/negative and since there is no pride in them, we naturally try to hide them, making the depths of despair associated with (in)fertility even greater. 

I am speaking about all of the above from experience because I have lived it. Do you know how liberating it is to share that publicly? The first time I announced my experience through this blog, I held my breath when I hit publish. I didn’t know what the reaction would be and whether it would be met with public disparagement or disgust, or whether I might even be let go at my corporate job for airing my so-called dirty laundry so publicly. Instead, I was met with responses from people that I knew and didn’t know; that they, their sister, cousin, friend, or colleague was going through it, and would I talk to them about it. In those moments, I understood that I was so far from being alone. I realized that I had been shouldering a greater burden than I had to; and had created more stress for myself by not talking about my (in)fertility story. I will purposely refer to (in)fertility like so moving forward because infertility and fertility are often interchangeable, however I believe that being in the community of fertility is powerful.

By being vulnerable by sharing my own story, I have come to learn that that there are other women who have been voicing their experience and encouraging others to do the same. These fertility warriors are trailblazers, and I recently had the honor and privilege of being in the same room with six incredible women who also see the possibility of change. Alexis Mera was there to capture it all on camera.

To say that it was magical being in the room with these other women is an understatement. We all “knew” each other without actually ever meeting, because although the journey was different for all of us, the end goal of becoming a mother was the same.  Our common bond was cemented in the interest of redefining the conversation around (in)fertility by breaking the silence to get it started.

The silence for all of us at one point or another was deafening. At times the path had been hell both mentally and/or physically, but I believe that we all realized that we could use our strength to give voices and faces to (in)fertility. When. the seven of us met, it was clear that we had found community through authenticity, transparency and vulnerability by sharing, and as a result, the ability to pay it forward by supporting others going through the fire.

This is just the start, by creating community, we discover resources, are empowered by options, and elevate the conversation for support publicly and in the workplace. We have the power to make infertility a safe discussion and promoting its importance for financial support consideration and workplace benefits for both women and men.

Be a trailblazer. Over the course of this week during National Infertility Awareness Week, six fertility warriors will be featured on Fertilust. Each will share their story and their reflections on their experience. Some of the themes expressed by our trailblazers included empowerment, community, perseverance, resilience, options, strength, and advocacy.

We welcome you to join the conversation by sharing your constructive voice in the comments, and/or by reaching out to find out how to tap into the community. 

In collaboration with Alexis Mera who photographed each fertility warrior and provided graphic tees from her collections, you can get a sneak peek into each woman’s story here as shared on Alexis’ blog. Please also be sure to check back each day this week as we highlight each fertility warrior in detail here on Fertilust.

Together we can take the conversation about (in)fertility out of the shadows to normalize it. We can make it inclusive by building awareness and community. By giving it so many voices, we can drown out the judgement, misconceptions and silence around the topic.

Rather than focus on the negative aspects of (in)fertility, we have the opportunity to get IN to the community of FERTILITY. Please join us.