I struggled with infertility for 13 years, and I am not alone. Millions of women experience some form of infertility. But despite that, it often is a subject that goes unspoken.
I think, partly because of this silence, women like me experience various shades of shame and despair. To support women like ourselves, I think it is important to speak up and discuss infertility.
Here are some of what I wish someone had told me about about the disease as I lived my infertility journey.
1.You are not alone.
Every year, for millions of women, Mother’s Day is a day of mourning. For myself included. I am one of the 10 percent of women in the United States who struggles with some form of infertility. Only after looking for support did I realize how prevalent infertility is, to the point that it is becoming an epidemic. Too many women suffer in silence and don’t realize how many of us exist.
2. It is not your fault.
I, like many women struggling with infertility, have felt as if my difficulty conceiving is a failure I caused in some way or could have prevented. Many of us could kick ourselves for waiting until we were older to have a child, a major contributor to infertility. Infertility doesn’t feel like a blameless disease.
3. (Most) Insurance Doesn’t Cover (Most) Infertility Treatment and it Costs A LOT
I had no clue how much infertility treatment cost until we went to our first IVF consultation. Luckily, it turns out my husband works in a state that mandates coverage for infertility treatments like IVF. But, for the majority of women, little to none is covered. Medications can cost thousands of dollars and one IVF cycle averages $12,000. Some couples will even spend hundreds of thousands of dollars to achieve their dream of having a baby.
4. Infertility Pushes You To Extremes
Couples mortgage their homes, take on huge credit card debts and personal loans, crowdfund, seek out discounts and find grants and programs to help defer the costs of infertility treatments. We subject ourselves to invasive treatments, like injecting ourselves with two-inch needles or taking pills that wreck havoc on our emotions. Sex often becomes a chore or duty during treatment. Until you endure infertility, you don’t realize how much you will put yourself through.
5. Infertility Treatments Don’t Always Work
I was shocked to find out the actual average success rate for one cycle of IVF was less than 30 percent! And it decreases substantially so that by age 45, there is only on average a 4% chance. While there are improvements and new techniques since the first IVF baby was born, one year after I was in 1976, the fundamental science is still the same. The fact is that majority of women undergoing any infertility treatment in a given month will not get pregnant.
6. There are MANY forms of infertility
I have secondary and tubal factor infertility. Other women have Polycystic Ovarian Syndrome, low ovarian reserve, uterine issues or more. A number of women have unexplained infertility or many different factors. And, on top of all this, there is male-factor infertility, with issues of sperm count and motility being a major barrier to many efforts to get pregnant. Infertility comes is all shapes and forms.
7. Infertility CAN Make or Break A Relationship
Luckily, through over 10 years of infertility, my husband and I have stayed married. But many couples do not. Blaming each other, getting obsessed with treatment, ending up in huge treatment-related debt — these are things that cause marriages fall apart in the face of infertility. The desire to have a child is a major reason people get married in the first place — so to not be able to fulfill it is a huge blow to many relationships.
8. People Won’t (Always) Understand
Many people are uneducated about infertility. I was too before I was knee-deep in it. I could fill a book with the misguided comments people make about the attempt to have a child, from “just relax” to “it will happen when it is supposed to happen.” The fact is, too many of us don’t seek treatment early enough because of those misnomers. The intensity of the desire to have a child isn’t understood by all, especially people who the gift of a child came so easily to.
9. Infertility Is Not ‘Curable’ Through Infertility Treatment
Even having a child through infertility treatments doesn’t “cure” infertility. I have experienced this first hand after having my daughter from a second successful IVF treatment at 41 years old. The same shame and anxiety about not being able to have a child still exists for many women, including me. In addition, with secondary infertility so common, being able to have one child doesn’t mean you won’t have infertility after an eventual hard-won success. Infertility can also affect our choices. In my case, waiting so long to undergo treatment limited my options for having more children.
10. Infertility IS Survivable
Whether you eventually conceive, choose to adopt, or accept a child-free life, you will survive infertility. You can’t cure it, but you can live with it. This is something I, like many women who have struggled with infertility, have to be reminded of. Especially when we are going through treatment. Infertility is something we have to grieve and process, which takes years, but it isn’t an insurmountable challenge.
Knowing you will survive infertility is often hard to believe. For me, I have been able to cope with infertility with support from others who do understand, like participants in various infertility related Facebook groups I belong to. Talking about the challenges of infertility is a useful way to weather difficult days. The more we speak up, the less we feel alone.
No one has to suffer in silence from the disease of infertility.
Melissa Miles McCarter struggled with secondary infertility since the death of her daughter to SIDS in 2003. In 2015, she had her daughter Willa Kate via FET (frozen embryo transfer) after a miscarriage from IVF and a series of other unsuccessful infertility treatments she went through for over ten years.
As a way to cope with her struggles, she edited the book, Joy, Interrupted: An Anthology on Motherhood and Loss, which also features art and writing on topics such as stillbirth, miscarriage and adoption.
More information can be found at melissamilesmccarter.com