Meeting Rachel was major for me. I (Kadi) was diagnosed with Early Menopause almost 10 years ago, and until I met Rachel, had never talked at length with another person who had gone through the same thing. Our stories were so similar. She was so knowledgeable about POF and POI, and had so many great resources that are linked out below.
The power of this community is through connection, and I’m so happy to have connected with Rachel!
*Quick disclaimer that we’re not reproductive health professionals, and we recommend discussing any questions, issues, or concerns with your doctor. The links below are google-able resources, and not medical advice.
What made you decide to share your story?
After experiencing years of intense grief, I found that taking action, speaking up, and owning my story, was not only cathartic, but empowering. On Mother’s Day this year, I wrote my first article on the subject: Here’s to strong women. May we know them. May we be them. May we raise them… or not. It was my way of honoring women in the same situation, while reminding others that not every woman can be, or chooses to be, a mother – and that’s okay.
I’m sharing my story because I want others to not feel so isolated. In being more visible, I hope to help normalize the topic and perhaps inspire more people to share their story.
What was happening in your life when you found out you could not have children?
My husband and I had recently gotten married after 12 years together. Having lived in various parts of the country, we decided to move back to Virginia (where we first met) to be closer to family and consider starting our own. We took several weeks to drive cross-country. I remember feeling excited and hopeful about the new chapter ahead – life felt full of possibilities.
But six weeks after moving back, I was diagnosed with Premature Ovarian Failure (POF) – something I’d never heard of before and knew nothing about. Bloodwork later revealed my stats were consistent with those of someone who was post-menopausal. I was given less than a 1% chance of conceiving on my own and told no amount of IVF or fertility drugs would improve my situation. Being over 35, I knew pregnancy might be more difficult, but doctors essentially said my condition made it impossible. There was nothing I could do.
That’s incredible. That is exactly what happened to me. I don’t think I’ve ever spoken to anybody else who had that experience. They diagnosed me with Premature Ovarian Insufficiency (POI) – said they couldn’t rule it as postmenopausal until they had been monitoring me for a year without my periods. But I knew, within months, that it had been a year. I just knew. Did you know anything was wrong before getting your diagnosis?
No. After getting married, I went off oral contraceptives which I’d been on for most of my adult life. I noticed my cycle was inconsistent, but didn’t think much of it. I figured my body needed to adjust. Plus, my periods had been irregular when I was younger which is why my ob-gyn initially recommended I go on the Pill – to “regulate my cycle.” Only years later did I learn it doesn’t do this at all. The Pill actually prevents a woman’s body from ovulating, only giving the illusion of a regular cycle. As a result, it can mask potential underlying health conditions, of which there are many – including POF.
If there’s one thing that needs to change in the medical field, it’s that more attention, resources, and funding need to be allocated to women’s reproductive health. The inequity of health care for women in this country is astounding with the U.S. consistently ranking the worst among first world nations. Medical professionals should also be providing more accurate education around oral contraceptives and instead of prescribing them as a cure all, take steps to ensure another issue isn’t at hand.
I was on birth control for maybe five years and when I went off, the same thing happened. My periods were irregular, but I had heard that it takes up to a year to cycle back. Even before I went on birth control, I wasn’t that regular, never the 28 day like-a-clock person, so didn’t think much of it.
Yes, I sometimes wonder how my life might have turned out differently if my doctors had researched the root cause of my irregular periods when I was younger. A simple FSH (Follicle Stimulating Hormone) blood test could have revealed that something was wrong. Being diagnosed with something you’ve never heard of is shocking. Learning it’s something you’ve unknowingly lived with likely for years is surreal. Did you have your FSH tested?
Yes – I can’t remember exactly what the numbers were, but it was outrageously out of whack for someone my age. I was 31, and the number should have been around 10, I believe. My number was well over 100.
Same. I actually haven’t met anyone else who’s had similarly high numbers. I was asymptomatic as well, so I didn’t experience any of the typical warning signs. As it goes, a cousin of mine has the same condition so in my case, there appears to be a genetic link.
After my diagnosis, I contacted my original ob-gyn to tell her what happened. It had been years since I saw her, but I wanted her to know that I didn’t fully understand how oral contraceptives worked when she put me on them, and that they presumably covered up my condition. When I asked why no one thought to investigate the cause of my irregular periods from the onset, she told me she couldn’t comment on my medical history since she no longer had access to my records. Once again, there was nothing I could do.
I believe stories like mine will continue to occur if standard protocol isn’t put in place for doctors to proactively look for, discuss, and address the origin of troubling, yet often dismissed symptoms – like irregular periods. At the very least, the option of a blood test to check hormone levels seems like a simple solution that could be made available to patients.
There also needs to be greater awareness of POF / POI, both within the medical community and the general public. Like most conditions affecting a minority of the population, information is scarce and usually only available to women after they’ve been diagnosed. It’s important that doctors educate women on this issue and help them recognize when their body isn’t acting right. I’m so impressed with the Daisy Network, a registered charity based in the UK, dedicated to providing information and support to women with POF / POI. Their Instagram is filled with inspirational women sharing their stories, many of whom were diagnosed in their teens.
The reality is, regardless of when I was diagnosed, nothing would’ve changed my situation except I would have known the truth earlier – and that’s an important detail. Having knowledge about a condition like POF/POI as soon as possible is crucial to a woman feeling like she has options, particularly when it comes to family planning. I think feeling uninformed all these years had a huge impact on me.
Absolutely! It’s infuriating that we didn’t have context for any of this.
Along with not knowing, the most difficult thing to cope with was the immediate loss of hope. I was completely blindsided by the diagnosis and the fact that I couldn’t do anything about it was devastating. It plunged me into a grief I didn’t even know was possible. I wouldn’t wish those early stages of grief on anybody.
Were there other people in your life who didn’t have children when you found out that it would not be an option for you?
Most everyone I knew already had kids – a few got pregnant naturally, but most went through IVF, something I assumed would be a viable and realistic option. My husband and I have close friends who had unexplained infertility and have fully embraced a childfree life. I’m so grateful for their friendship (even though they now live on the other side of the country) – it really makes a difference to have people in your life in the same situation.
How did you go about trying to connect with other childless/ childfree people in your community?
One of the first things I did was find a local group on Meetup.com. There was one called DINKs (Dual Income No Kids) that hosted different types of events which seemed promising. We signed up to attend a casual happy hour with about 10 other people. My husband wasn’t super thrilled with the idea of getting together with a bunch of strangers over the commonality that we didn’t have kids (if I’m honest, I wasn’t really either.) But we had just moved back to Virginia and figured it would be a good way to meet other people. Long story short, we were the first to arrive and no one else showed up, including the host. I never found out why and was too discouraged to sign up for another event.
I kept at it though and decided to try a more organic approach, introducing myself to new people everywhere I went. Finding friends as an adult is something I imagine people with children don’t have to think about as much since there are natural, built-in social interactions within the parenting community based on school/activities. In my fitness class, I started talking with a few women around my age. I remember feeling relieved when I learned they also didn’t have kids. We ended up getting together outside of class and have been friends since.
I can’t emphasize enough the importance of connecting with other people who also don’t have children. It doesn’t even have to be in person – I’ve made some wonderful connections online / via social. Whether or not the topic of kids comes up, it’s refreshing to share conversations and experiences with others who you know have a similar lifestyle. I also think it provides a sense of belonging that for many of us, feels rare and affirming.
What has been your experience in sharing your journey through infertility with those who are important to you?
Isolating. No matter how well intentioned family and friends are, unless they’re in the same situation, it’s impossible to fully understand the impact that not having kids has on every aspect of life.
I’ve been told, “I felt the same way before I got pregnant…” or “having children isn’t all it’s cracked up to be…” or “you can have my kids anytime…” People mean well (and no doubt what they’re saying is true), but those statements can actually be quite hurtful. For those of us who didn’t have a fair shot at having kids, we live in a world where we’re constantly reminded of what we don’t – and won’t – have. Even retired folks telling stories of grandchildren, or expressing how they can’t wait to be grandparents, is a pensive reminder of yet another milestone, decades away, that we won’t achieve.
The phrase “infertility warrior” is commonly applied to women who succeed in overcoming infertility with the outcome of a baby. I can tell you from experience, that when you don’t even have the option of fertility treatments, much less end up with a baby, you are no less of a warrior for surviving. The same is true for anyone – regardless of whether they want to and/or are able to have children – who finds themselves feeling alone and invalidated due to the relentless focus that society places on becoming a parent.
Currently, women without children, ages 35 and older, make up between 15-20% of the U.S. population. The reasons for their childless – or childfree – status are as varied and complex as the women they apply to. I think this insight makes our community particularly special. Among the diverse range of stories and situations, we’re able to learn from one another and find unconditional acceptance – a kinship of sorts. I find this unity remarkable and something unique only to us.
For many, in order to fully embrace life again, we have to undergo a metamorphosis, transforming our isolation, grief, and vulnerability into wisdom, empathy, and strength. It’s a journey we must ultimately navigate on our own, but knowing others like us are out there, is a comforting reminder that we are not alone.
Has infertility impacted relationships with family and friends?
Yes. Not having children is an extraordinary loss for anyone who wanted them or at least the chance to have them.
In full transparency, I wasn’t sure about having kids (ambivalence toward motherhood is a concept garnering more attention), but assumed it would eventually happen. My husband and I also took a more unconventional path, so we were on a different timeline than our peers. When people began getting married, we went to graduate school. When they started buying homes, we were moving to different cities. When they began having kids, we were advancing our careers. By the time we started thinking about settling down, many people we knew were miserable – either complaining about their kids, stressed about finances, or having marital problems. So instead, we decided to take a year-long backpacking sabbatical around the world.
In retrospect, I could’ve never predicted how the grief from my diagnosis would impact my relationships with family and friends. There’s a domino effect that occurs from this new reality we find ourselves in. It starts with a clear dividing line separating people without children from mainstream society – and it remains through every stage of life. In many ways, we become relegated to the supporting cast in the lives of others with children. We listen to challenges, offer assistance, give freely of our time and energy – more than not, we’re happy to do so and want to be included.
But somehow, curiosity in our own lives is never quite reciprocated. It’s as if not having children has somehow rendered our lives less interesting, less meaningful, and less significant. I’ve experienced these diminishing returns firsthand. Compared to those with children, it can feel like our challenges or worries are never as difficult, our successes never as impressive, our capacity for love never as great. Even our humanity may be perceived as incomplete. In a heartfelt thread, writer Annie Kirby speaks to how the loneliness can almost be as bad as the childlessness. I imagine family and friends want to help, but simply don’t know how – and we may not know how they can help either.
Do you feel your infertility has impacted the relationship you have with your body?
Absolutely. I’ve lived a very healthy lifestyle for over 15 years now, eating a well-balanced diet of natural foods and exercising regularly – hiking, yoga, dance. To learn I had a genetic condition where none of that mattered, or even remotely improved my situation, felt especially cruel.
Doctors often recommend that women get in optimal health to increase their chances of conceiving. Here I was, perfectly healthy, except for a random genetic condition affecting only one percent of the population. I felt like my body failed me in the most basic, fundamental way possible. Most people who see me would not assume anything is wrong – physically, emotionally or spiritually. It reminds me of that quote, “Be kind, for everyone you meet is fighting a hard battle.” (Ian Maclaren)
What has been the most challenging part of the experience?
Disenfranchised grief, defined as “grief not recognized or acknowledged by society” (Source: Wikipedia).
There’s a misconception that you can’t grieve something that never existed. But grief manifests itself in different ways. My diagnosis was an instant loss of hope, as well as possibilities for a life that will never come to pass, a role that will never be fulfilled, a love that will never be felt. Even though the loss is intangible, it is no less real. Grief is also not something you eventually get over, or that goes away with time – that can be hard to accept. The truth is, grief becomes a part of who you are forever.
While no one can fix or take away your grief, they can potentially ease your suffering. That’s why it’s important to surround yourself with people who have the emotional intelligence and empathy to sit alongside you in the discomfort of your grief, knowing there’s nothing they can do and nothing that can be done. However, not everyone is willing or capable of doing this, which adds yet another layer of grief – mourning relationships with the very people we hoped would be able to understand, support, and validate our feelings.
Writer Jamie Anderson came up with a profound perspective: “Grief is just love with no place to go.” Indeed, I’ve had to learn how to absorb grief into my life, process it, and use it as a tool to help me find that same joy, excitement, and hopefulness I felt back on that cross-country drive, before I knew anything was wrong and the world was full of possibilities.
The world is still full of possibilities – just different ones now. If these last few years have taught me anything, it’s that how you channel your grief can transform surviving into thriving.
What have been some of the most positive or rewarding aspects of your journey?
By far, connecting with other people – both childless by choice and not by choice (special thanks to these newfound friends, you all know who you are). In many ways, these relationships go just as deep, if not more so, than friendships from my youth or those based on shared interests. I definitely hold a special place in my heart for all the women – and men – I’ve met on this journey.
I’m most appreciative of the inspiring individuals who have put themselves in the vulnerable position of being visible and providing a platform to share stories – particularly Jody Day of Gateway Women, in addition to Melanie Notkin of Savvy Auntie, Isabel Firecracker of The Uprising Spark, Katy Seppi of Chasing Creation, and of course you, Kadi and Laura, of Anotherhood. You all are paving the way to shift the often overlooked and misunderstood narrative around people without children, and foster a much needed community.
For me, this experience has definitely heightened my awareness of, and empathy for, others who don’t quite fit the status quo. Not only those who are childless by choice, chance or circumstance, but marginalized and underrepresented people who may feel ostracized by society such as the elderly, sick, poor and disabled. Practicing kindness, compassion, and gratitude helps me to think less about arbitrary societal norms/expectations, and instead, focus on the greater concept of our shared humanity.
If you could change one thing about how being infertility is viewed, what would you wish to change?
That having a child is the only way to overcome infertility and be happy, fulfilled, and valued. For many, becoming a parent is simply not an option.
The typical “success” story on this topic is about someone who bravely fights infertility and survives… with the outcome of a baby. Whether through natural birth, donor egg, adoption, or other means, a baby is always the end result. While there is certainly merit in these scenarios, we, as a society, must also recognize – and validate – the extraordinary courage it takes for those of us to say we’re not able to have children, we’re giving up on trying to have them, we don’t want them, or we’re not sure one way or another. Like everyone, we just want to feel that our lives are as important, valuable, and worthy of celebration as those who have children.
What are some of the things that have helped you to embrace your life, your body, and your infertility?
Taking action. Since the 2016 election, I’ve leveraged my advertising and branding expertise to raise awareness of, and advocate for, women’s rights and social equality. I’ve been actively involved in Women’s March for the last four years and am currently part of a grassroots initiative working to enshrine the 28th Amendment (Equal Rights) into the U.S. Constitution.
I’m also working on being more present. Earlier this year, I earned my yoga teacher training certification (RYT-200) which helps me with this. While the physical practice of yoga is extremely gratifying, it’s the emotional and spiritual benefits that make it a regular commitment for me. My recent mantra (a phrase used to keep the mind focused) is “strength in surrender.” Surrendering is often perceived as submissive – it means to give up, cease resistance, relinquish control. Yet there’s hidden wisdom in this seeming contradiction. In surrendering, we actually find a new, different strength – one where we realize we no longer need, or desire, to hold on to something that serves us no purpose. For me, the act of letting go has been quite empowering.
Lastly, my husband and I love to travel. When we get on the other side of this pandemic (hopefully sooner than later), we’re looking forward to some new adventures. Travel is one thing that consistently keeps me present – and it’s full of possibilities.
What role does creativity play in your life?
I’m a creative director by trade so creativity is an integral part of my life, both professionally and personally. Growing up, I was always writing, drawing, dancing, playing violin, or doing theater. As an adult, I continue to be an avid supporter of the arts. Whatever the medium, I believe the arts are one of the most natural, beautiful, and uplifting expressions of what it means to be human.
People often think you have to have a certain skill or talent to be creative. But really, anyone can be creative – all it takes is a willingness to explore your imagination. What I particularly love about creativity is that it knows no bounds. That gives me great hope – and after the last few years, it’s a feeling I love having again.
What inspires you?
For obvious reasons, stories of the underdog – particularly those who have had to overcome multiple layers of adversity beyond their control. I appreciate stories that are honest, messy, and imperfect. The individuals in this community inspire me. It’s interesting to see the different spaces that people are in, from childless to childfree, to everything in between. I believe each of us can play a part in bringing the concept of “anotherhood” to life and ultimately, be the inspiration we’re all seeking – including for ourselves.