An Infertility Diagnosis Can Be As Stressful As A Cancer Diagnosis
Infertility is a condition that’s still largely taboo in public conversation, even though 1 in 10 women experience it. Or, when it is discussed, other people offer (mostly unwanted) advice: “Just relax! Adopt a baby! Try this, try that.”
Infertility just doesn’t garner the same sympathy, or as much research money, as, say, cancer. Even though it’s been proven that experiencing infertility is just as stressful as having cancer. One study surveyed a group of women who suffered from various serious medical conditions, like infertility, chronic pain, cancer, hypertension, HIV, and cardiac rehabilitation. The infertile women’s global scores on the psychological questionnaire, as well as their depression and anxiety scores, were equivalent to the cancer patients’ scores. Other research from the past couple of years shows that the depression rate among infertile women is 28-42% and the anxiety rate is 36%.
Why is infertility so stressful? And why doesn’t it get the same response and medical attention that cancer does?
The Stress That Is Infertility
Unless you have also experienced infertility, it’s hard to imagine the experience and thus to empathize. But let me try to describe it.
Similar to a cancer patient, the infertile woman has many doctor’s appointments, sometimes coordinating care among different practitioners and specialists. There are many tests, some monthly, to keep up with, plus the impatience of waiting for results or hoping that the last test will finally give you an answer. You’re trying different medications or supplements or lifestyle changes (or all three) and waiting to observe a change. You’re dealing with insurance companies and often paying many extra expenses out of pocket. You’re driving back and forth to all these appointments, taking time away from work, family, and free time. It all causes stress, which, guess what, can be a contributing factor in infertility and how effective treatments are.
And that’s just the practical, hands-on aspect. What about the emotional and relational stress? Living with infertility as a woman feels very isolating. It’s a deeply personal, negative experience. The one thing you’d always assumed you’d be able to do – get pregnant – doesn’t come naturally like it’s supposed to. You feel betrayed by your body, broken in an intimate way that leaves a mark at the soul level. When coupled with the yearning for a baby, the frustration with your own body intensifies, and it can consume you. It can contaminate your perspective, drain your hope, and exhaust your joy in life.
You feel betrayed by your body, broken in an intimate way that leaves a mark at the soul level.
The isolation is furthered by the fact that you and you alone can do the work to address your infertility. Only you can track your cycle. Only you can eat the right foods and vitamins. Only you can get pricked by needles for the monthly blood work. Only you can do the ultrasounds, the biopsies, the surgeries. Your husband, your family, and your friends can encourage you, but they can’t remove the burden from your body.
Infertility often comes with the painful awareness of how little control you have over your fertility and your life plans, which sometimes makes us try to grasp control in other areas of our lives. For example, your sex life can become consumed with when you’re fertile and when you’re not, and when is the best time to have sex.
Infertility also easily leads to bitterness. You’re hyperaware of every pregnant woman and her adorable baby bump around you. You notice every baby. You avoid baby showers and social media on Mother’s Day. It seems like everyone else gets pregnant, even your friends or family members who just came off birth control or were worried about their own fertility. Everyone, except you.
This is the experience of 1 in 10 American women. You probably know at least one woman who worries about her fertility, or maybe that woman is you. But if this condition is so pervasive and so painful, why aren’t we doing much about it?
Why Doesn’t Female Infertility Get as Much Attention as Cancer?
First off, infertility rarely leads to death whereas cancer will kill you if left untreated or if discovered too late. So there is a reasonable life-or-death urgency when it comes to diagnosing, treating, and researching cancer that just doesn’t apply to infertility. While suffering from infertility doesn’t have the same gravity as having cancer, it doesn’t negate the need to resolve the issues that cause infertility in millions of women.
Yes, millions of women in America have a reproductive disorder, hormone imbalance, or structural issue that negatively impacts their ability to get pregnant or stay pregnant. Polycystic ovarian syndrome (PCOS) is one of the most common causes of female infertility; the CDC estimates that 6-12% of women of reproductive age have PCOS. That’s as many as 5 million women. Endometriosis is another widespread reproductive disorder, affecting at least 11%, or 6.5 million, American women.15% to 30% of infertile couples are diagnosed with unexplained infertility, which means there is no apparent cause to the infertility. All the tests are normal, the structure is sound, etc., or there are small issues that are not significant enough to explain the infertility. The CDC also states that 8.8% of married women, aged 15-49, will never be able to get pregnant.
Secondary infertility, which means the couple has a miscarriage following a birth or is unable to get pregnant a second time, is harder to track. According to The New York Times, about 2 million women, age 15-44, suffer from secondary infertility. About 10-20% of known pregnancies end in miscarriage.
15% to 30% of infertile couples are diagnosed with unexplained infertility.
With so many women suffering from reproductive disorders and infertility, it makes you wonder: Why isn’t there more awareness and advocacy? Where are the researchers and the funding to find solutions? Take PCOS and endometriosis, for example.
As I wrote in a previous article, endometriosis is a frustrating disease – it’s hard to live with, hard to get diagnosed, and hard to get treated properly. And the lack of attention and research money it receives from the medical community is likewise frustrating. According to a Cosmopolitan article, “the NIH projects its endo funding to be just $6 million [in 2020]. That’s less than $1 per patient – and $4 million less than endo research received just four years ago. For context, Alzheimer’s disease gets about $344 per patient. (Alzheimer’s, by the way, affects roughly the same number of people in the U.S. as endo yet is projected to receive nearly two billion dollars in funding from the NIH this year.)”
There is also a disparity between the research money available for PCOS and for diseases with similar morbidity. A 2017 study compared how much money the NIH invested in research for PCOS and three other disorders with “similar degrees of morbidity and similar or lower mortality and prevalence” (rheumatoid arthritis, tuberculosis, and systemic lupus erythematosus) during 2006-2015. PCOS was less funded according to the total mean 10-year funding: PCOS received $215.12 million, while rheumatoid arthritis received $454.39 million, tuberculosis got $773.77 million, and systemic lupus erythematosus got $609.52 million. Furthermore, fewer centers and project grants gave money to PCOS than to the other diseases. The study concluded that “PCOS research may be underfunded considering its prevalence, economic burden, metabolic morbidity, and negative impact on quality of life.”
In 2020, less than $1 per patient was granted for endometriosis research by the NIH.
As a side note, female cancers – except for breast cancer – also got less funding from the National Cancer Institute in 2018 than AIDS, leukemia, prostate cancer, and melanoma. Breast cancer received the most funding at almost $575 million, whereas cervical cancer received $71.5 million and ovarian cancer received about $121 million.
The Cosmopolitan article on endometriosis explains the significance of funding: the allotment has a trickle-down effect, meaning less money at the top means fewer researchers will apply for grants and fewer doctors and scientists will choose to focus on it. So if we want to see more research on female fertility issues, the institutes and centers need to start allocating more funding for those areas.
So we know female infertility and reproductive disorders are common and are currently under-researched. But why? Why aren’t we throwing money and science at these problems?
I don’t know the answer, but I have a few guesses. Maybe there’s too much money in birth control. Maybe the mainstream feminist narrative that children aren’t wanted or needed smothers the demand. Maybe there aren’t enough doctors who are well-trained in the natural female cycle and fertility to advocate for women. Maybe there’s too much money in IVF to spend money on actually trying to solve the problems that inhibit conception in the first place. Maybe it’s all of the above.
So what do we do? Advocate for yourself. Do your own research. Insists on tests and on your own timeline with your doctor. Follow more naturopathic/female fertility-friendly doctors on Instagram like Dr. Jolene Brighten, Dr. Saru Bala, Dr. Corina Dunlap, and Dr. Naomi Whittaker. Tell your friends when you find a good doctor or a solution to a period or fertility problem. Keep the conversation and the grassroots movement going forward.
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