We Removed The Word "Infertility" From Our Site & Here's Why
Inspired by a conversation with scientist and fertility specialist Cleopatra Kamperveen, Ph.D., mindbodygreen has set out to be more intentional with the word "infertility" on our website. In most cases, we have misused the term, and in those cases, we have and we will omit the usage. Going forward, we'll delineate between those struggling with fertility and those diagnosed with true sterility. To get a better understanding of why we're prioritizing this initiative, fertility experts along with our co-founder and co-CEO Colleen Wachob share some insight.
A word from our co-founder & co-CEO Colleen Wachob.
At mindbodygreen, we champion the mind-body connection. It's the foundation from which we build our well-being. What's more, the language we use matters—especially when it comes to our health. This was especially true in our fertility journey.
My husband Jason, mbg co-founder and co-CEO, and I learned early we wouldn't be able to conceive children without the use of IVF. What we didn't expect was the three years involving three pregnancy losses, eight failed IVF embryo transfers, and numerous canceled embryo transfers—all while running a company together.
Today, we are blessed with two daughters, but the struggle with fertility was a dark, lonely, isolating place. Friends and family don't know what to say—or they can be afraid to say anything. The unsolicited feedback on how you should be thinking about family planning can be painful. Financial well-being is jeopardized, as savings are rapidly depleted (and yes, it's a privilege to even be on an IVF journey). The physical toll on the body is real, but the emotional roller coaster and cost to mental health and well-being are catastrophic.
While I couldn't control the timing or the outcome of my fertility journey, I could control my thoughts.
I believed that my body could bring a child into the world when science (and the universe) felt it was the right time, and I surrendered (as much as I could) to the process. Finding an empathetic doctor (thank you, Amr Azim, M.D., and Alyaa Elassar, M.D., of NYC IVF) who believed in my ability to have children—despite how my IVF failures affected the clinic's "success" metrics—was key in continuing on this journey.
Having a support system who vocalized positivity was so crucial for me—but not all women with fertility challenges are as lucky. Many women receive a daunting diagnosis of "infertility" during their journey, which can be discouraging, misleading, and affect both mental and physical health.
That's why I'm thrilled to announce we're reevaluating our usage of the word "infertility" within the mindbodygreen ecosystem and evolving how we talk about fertility on the site to ensure that we are using empowering language that better reflects the science.
Why the word "infertility" does a disservice.
We understand complex health situations through the words our doctors use. "When a person of any gender is told that they are 'infertile, it carries enormous psychological weight," says scientist and fertility specialist Cleopatra Kamperveen, Ph.D. "It says, 'I can't get pregnant'; 'I'm broken'; 'My body has failed me.'"
"[The word] automatically takes reproductive choice out of the hands of the woman and couple," says Aumatma Shah, N.D., a holistic fertility doctor. "Those diagnosed with infertility often feel it's something to be resigned to, ashamed of, and feel hopeless on the journey to parenthood. It evokes desperation, feelings of inadequacy, and 'less than' our more fertile counterparts."
What's more, the diagnosis can feel final, "when, in fact, it should just be viewed as a challenge to conception," Shah adds.
How "infertility" is a misleading and inaccurate term.
Beyond its harmful emotional connotations, the term "infertility" is very misleading. "In everyday terms, 'infertility' is taken to suggest that someone is incapable of reproducing. Not only is this suggestion harmful, but it is also inaccurate," says Kamperveen.
The term "infertility" has a specific medical definition: The inability to get (or stay) pregnant after 12 months of unprotected sex, she says. "But the medical definition and intent behind 'infertility' get lost in translation—psychologically, socially, and culturally."
What's more, while nearly 9% of women in the U.S. have received a diagnosis of "infertile," Kamperveen says approximately 3% are likely to be truly infertile or sterile, according to data on people who are "nonvoluntary childless," meaning they are physically unable to have children.
Sheeva Talebian, M.D., a board-certified reproductive endocrinologist calls the word "a 'bucket' term that really does not describe the actual diagnosis." For that reason, she says it has "fallen out of favor among my generation of reproductive endocrinologists."
What's more, Shah notes the diagnosis of infertility doesn't offer any specific information to the couple about what is happening with their fertility. For example: "Is she ovulating? Are the sperm healthy? Does she have PCOS or endometriosis that could be causing a challenge in conceiving?" she says. "Infertility is a 'diagnosis' that does not actually diagnose you with anything."
What words can we use instead?
At Kamperveen's Fertility & Pregnancy Institute, she says they have a policy against using the word "infertility." Instead, they say "fertility challenges."
"The word 'challenges' accurately captures and expresses the reality of our clients' circumstances: They are experiencing challenges getting and/or staying pregnant, and challenges are temporary, not a part of who you are," she says.
Talebian similarly uses more positive statements when speaking with patients, such as: "I am here for your fertility journey"; "You have fertility issues, likely due to endometriosis" (or other etiology); "You have fertility challenges that we are going to try to better understand and treat."
When we use these more accurate terms, "The possibilities open up! There is an opportunity for the couple to take charge of their fertility and do things to optimize and increase their fertility and chances for conception," says Shah. "Additionally, there is more opportunity to seek out a skilled integrative or functional medicine doctor who can help them discover what might be causing their fertility challenges."
At mbg, we have taken these notes to heart and will continue to use similarly positive terminology moving forward. While removing the "in" prefix may seem simply semantic to some people, we feel strongly about this change. And for the 3% of the population dealing with "true infertility" as Kamperveen calls it, we will use the term "sterility." Our hope at mbg is that anyone who reads a story about fertility on our site feels empowered by information and never discouraged by disheartening labels.
"From my perspective, mindbodygreen's initiative to remove the terms 'infertility' and 'infertile' from their body of work is a monumental step asserting that we can, and must, be more precise with our language, diagnoses, and understanding of the data," says Kamperveen, "knowing that they are not just informing codes on insurance forms but, rather, have real and profound psychophysiological, social, and cultural consequences for humans and their families every single day."
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