The Stigma of Infertility

If someone you know is dealing with infertility, chances are you do not know it. The statistics state that 1 in 8 women are infertile and the overall statistic for infertility increases when you include male factor infertility. Infertility is a silent disease (and it is considered a disability under the Americans with Disabilities Act).

Unlike other medical conditions, infertility is considered a personal matter of which many couples do not discuss with family or friends. In addition, the debate about whether the desire to have a child is a “lifestyle” choice instead of a “major life activity” continues. Ask anyone who has experienced infertility and they will tell you that having a child is not a lifestyle choice.

In March, the Arizona affiliate of RESOLVE hosted their third annual Walk of Hope. The first year of the event we had approximately 300 attendees. The second year this number dropped by half. For the third annual walk we were hoping to see an increase over the second year or at least maintain 150 walkers, but our numbers dropped again. It came to my attention that many individuals did not attend because they, “did not want to be a poster child for infertility.”

I want to know why there is such a stigma attached to infertility. In a recent article I read about a couple who was sneaking fertility treatments so that their family would not know they were using a doctor to help them get pregnant. Why the secreacy? Why the shame? I don’t get it because I share my story, when appropriate. My daughters know that their parents could not get pregnant and so we went to a doctor. I’ve even described how th doctor removed my eggs and some basics of the embryo transfer. It is not a secret and as my girls get older they will realize how much we wanted to have children and how precious they are to us.

I am an infertility survivor and I recognize that not everyone who experiences this disease has a child. It is heartbreaking. I’ve heard the argument many times – infertility isn’t a valid disease because it doesn’t kill you. Yet it is a medical condition that deserves respect and awareness. But how can we convince the general public to support us in a positive manner if we are not willing to do the same? At one time breast cancer was a taboo topic and now everyone, even large corporations, support the cause by raising money and awareness.

If you were never touched by infertility in your own life, do you have any friends who have stuggled to add a child to their family? How did you judge them? How did you support them?

by Kelly Damron

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Photo graciously provided by harmonica pete , through a Creative Commons license, some rights reserved

7 thoughts on “The Stigma of Infertility

  1. Heather Meadows

    I’m infertile due to chemotherapy treatments I underwent for leukemia when I was 19. My ovaries don’t work properly; I don’t get periods unless I’m on hormone supplements. My eggs are probably all dead.

    It’s been 13 years since then, and while the pain has diminished some, I know it will never truly go away.

    Having children is only a lifestyle choice if you have the ability to have them in the first place. If I had the ability, I would choose to have them.

    One reason I don’t talk about my infertility much is that people always try to help, saying things like “Have you considered adoption?” They don’t understand.

    I also feel like I’m not a whole human being or a real woman. I’m not the type who runs from sharing pain, but after awhile it gets tiresome having to explain everything. Sometimes I just say we’ve chosen not to have kids to avoid the conversation.

    I don’t really want to carry the banner of infertility, to fight for research funding, to let everyone know that I’m defective. I don’t mind sharing here and there, even publicly in comments or on my blog, but to use your words, I don’t want to become the face of infertility. I don’t want that to be my legacy. Just like I don’t want leukemia to be my legacy. I would prefer that these things be trials I went through that shaped who I am…not the things that define me.

    Maybe I’m running away, but I want to be more than just a victim of circumstance.

  2. Kelly D.

    Thanks for sharing your story.
    Your comment, “I also feel like I’m not a whole human being or a real woman.” defines how many women process their infertility diagnosis. Yet this is not how women feel about themselves when diagnosed with other diseases? Why is infertility different?

    I view infertility as a trial in my life that has shaped me, my marriage, and my family. Yet, I don’t feel defined by it. It is possible I might feel differently if I did not have children.

  3. Heather Meadows

    I think breast cancer might come close, especially losing a breast.

    The difference between the ability to have children and the ability to do whatever some other disease might take away is simple. Having children is considered a cultural norm. If you’re married, you get asked if you have kids, and if you say no, you’re asked when you’re going to have them. Even if your mother-in-law knows you’re infertile, she’ll still say she wishes you could give her a grandchild. We are taught from birth to want children, through everything we see around us. And we are taught to expect that when people reach a certain age, they will begin to have families of their own. When we hear about a 30- or 40-something who has no children, we think it’s sad. When we hear of an older woman with no grandchildren, we think of how lonely she must be.

    (I’m not sure the expectation is as high for men, but since I’m not a man, I can’t say anything for sure.)

    Not being able to have children, then, is essentially being locked out of a fundamental part of human life. It’s very different from, say, congestive heart failure (which I have also suffered), which can take away the ability to do things like very intense aerobic exercise. Losing the chance to become a professional kickboxer is sad, but society doesn’t expect everyone to become a kickboxer someday.

    I think there are just certain things, like walking, seeing, hearing, feeling pain, and having children, that are considered part of the standard human experience. If one of those things is lacking, it’s more like you’re crippled than it’s like having a disease you manage.

    Of course, I’m speaking from a position of extreme hurt. Having children is not something a doctor can help me with. The ability is simply gone. So maybe that is affecting how I interpret things.

  4. Kelly D.

    Heather, thank you for your insight. I have learned a lot from your comments. I do hope that someday infertility is treated more like a disease than a stigma, especially for those suffering silently inside.

  5. Heather Meadows

    Just read an interesting article about people who choose to be childless, and the stigma attached to that choice. I think this is further evidence that childlessness/infertility speaks to something much deeper in our cultural subconsciousness than other diseases.

    I do agree that it would be best if we could get past this, but it seems like it’ll be a long road.

    Thanks for giving me the opportunity to talk about it. Occasionally I need that :)

  6. Jenn

    I struggled with infertility for two years and it wasn’t the shame factor that kept me from sharing it with my friends and family. It was month after month of expecting to get pregnant and finding I wasn’t. It is heartbreaking enough to find out yourself that it was yet another month of the miracle of life eluding you. I didn’t want to have to explain it to all of my friends and family every month (month after month).

    I also didn’t need their well-intentioned advice. (Relax! It will happen!).

    No, it wasn’t shame in the least. It was the added stress of having to explain what only someone who has struggled with infertility knows. There is more to it than relaxing. Everyone is an expert out there- and they all have their perfect tips on what exactly they did to get pregnant. But there is no perfect answer to it- and even some that go through ART measures still never get pregnant. Some are completely open about it and some, like me, don’t want to have to battle the ignorance of those that have never been through this.

  7. Kelly D.

    Jenn, thanks for sharing your perspective. I agree with you, many people do not understand the stress and sadness of infertility and they can be ignorant.

    We did share our infertility with our friends, but we didn’t keep everyone in the loop as to where we were in treatments so we wouldn’t get too many questions or advice.

    Coping with infertility is very individualized!

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