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10 Things I Wish Someone Had Told Me About Infertility

05/05/2015 11:39 am ET | Updated May 05, 2016

Women like me face Mother's Day with shades of shame, despair and silence. So, I would like to take this opportunity to speak up and share with those who know someone who has infertility or are experiencing it themselves. Here is what I wish someone had told me about about the disease.

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 struggle 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, feel as if our difficulty conceiving is a failure we have 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 four years ago. 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.

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5. Infertility Treatments Don't Always Work

I was shocked to find out the actual success rate for one cycle of IVF was less than 30 percent! 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 issue in many efforts to get pregnant. Infertility comes is all shapes and forms.

7. Infertility can Make or Break A Relationship

Luckily, through 12 years of infertility, my husband and I have made it so far in our marriage. But many couples do not. Blaming each other, getting obsessed with treatment, ending up in huge treatment-related debt -- these are all ways marriages fall apart in the face of infertility. The desire to have a child is a major reason people get hitched in the first place so to not be able to fulfill it is a huge blow to many relationships.

8. People Won't Understand

Many people are uneducated about infertility, like I was 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" or "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. The same shame and anxiety about not being able to have a child still exists for many women. 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.

10. Infertility IS Survivable

Whether you eventually conceive, choose to adopt, or are 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 struggling 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.

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Knowing you will survive infertility is often hard to remember during our own "Unmother's Day." For me, I am able to 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 such difficult days.

No one has to suffer in silence from the disease of infertility.

Melissa Miles McCarter has struggled with secondary infertility since the death of her daughter to SIDS in 2003. As a way to cope with these losses, 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. You can follow Melissa on Facebook and Twitter.

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