Why don’t more women talk about their infertility? Is it shame? Embarrassment? Or simply that it’s no one else’s business? Whatever the reason, it is their life, their disease, and they can talk about it or not. But… by staying silent do they do a disservice to others?
Where are the Stories of Infertility
I read a recent article in the Huffington Post Blog by a woman asking just this question:
What I want to know is, why aren’t more women sharing their stories of infertility. There have been a few exceptions like Celine Dion, Giuliana Rancic and Sarah Jessica Parker, but on the whole, not much. When I hear that Susan Sarandon gave birth at 45, or Halle Berry is pregnant at 47, or Geena Davis had twins at 48, my question is, how? Is it taboo to talk about this? Do these women not share their story because they’re embarrassed? Or do they want to give the illusion that it “just” happened? For eight years, I’ve been hoping to hear more stories about infertility from women of all walks of life and I feel I’ve been let down. Yes, the friends that have become pregnant after their struggles of infertility are a blessing in my life, because it gives me hope, but I want to hear more stories. I want to feel I connect with a community of women and couples that know what it means to be reproductively challenged, but they are few and far between.
I do think women talk about infertility, but most choose not to do it publicly, preferring instead to talk with a few trusted friends or to share on closed support groups such as the Creating a Family Facebook Support Group. Not every woman wants to share her pain. Not every woman needs public recognition of her suffering. Quite frankly, not every woman can withstand gracefully the inevitable ignorant, hurtful comments…and trust me, they will come. (See for example: 12 Stupid Things People Actually Say to the Infertile, The Art of Giving Advice to Your Infertile Friend–DON’T, Please Keep Your God Out of My Infertility, Why Do You Stay with Your Infertile Husband if You Want Kids So Much?)
Largest Sorority in the World
A friend of mine was diagnosed with breast cancer almost exactly a year ago. It has of course been an awful year for her, but she told me she also has never felt such support–mainly from others who had gone through diagnosis and treatment before. She said she felt like she had been inducted into the largest sorority in the world.
By failing to talk about infertility, are we denying ourselves the sorority of others who have walked this path before and the power that comes with numbers? Do we run the risk of marginalizing the disease of infertility—implying that it’s not bad enough or big enough to warrant its own banner? And perhaps most important, do we abandon the newly diagnosed to figure it all out alone without our support?
Who do you talk with about your infertility? How do you balance privacy with sharing? Do you think you owe it to others to be more public?
Image credit: Sarah Ackerman
During the most intense – physically, financially, and emotionally – time of our fertility struggle I had several friends pregnant with their first or second child. Part of staying in the closet was not wanting to be Debbie Downer during their special time and not wanting these precious friends to feel like they couldn’t talk frankly in front of me. Of course if I’m honest I also felt shame – and one long time acquaintance I kept seeing at the fertility doc’s office who refused to acknowledge or speak to me deepened that shame. I so wish I had reached out to someone or knew of this wonderful community – I hope to be there for others struggling.
I can see your point about not wanting to be the cloud in front of their sunshine, but I suspect that your friends would have been able to maintain their joy, while still honoring your pain. It is a hard balancing act though.
Many times, it is the insensitivity of the comments, from well meaning, but totally incapable of understanding people…even siblings can’t comprehend how hurtful it is to hear comments like, “my husband can just walk in the same room and I get pregnant.” And, when you hear how it’s imperative that someone “gets a vasectomy as quickly as possible,” it’s hard for the infertile to be compassionate with their family members. So, yes, it’s a very difficult subject to discuss and be open about, except with those who have also suffered through it.
When I came out of the FC it was the best thing I have ever done. I had such a support group that I never knew was there! I even sat for an interview in a local paper to get word out that infertility is real and out there.
Livia, many people say the same thing. They had no idea that they were surrounded by others who had already gone through this or were in the midst of it.
I can definitely relate to the question on where are the support groups for us women suffering from infertility.
Thankfully I was able to find a very active chat forum about 8 or 9 years ago in the midst of my hardest struggle. I spent hours reading over the old discussions and new ones just to feel connected to other women who were experiencing what I was.
We all have our unique stories and who we feel we can talk to. For a while I felt very alone in my infertility and unable to talk to any family who could truly relate to me and my endometriosis which carried both an emotional and physical pain on a regular basis. I tend to have a hard time with the balance of my personal privacy and sharing with others. I either don’t share at all or tell people more information about myself than they probably care to now.
I do believe coming through the struggle and being in a good spot in my life with my infertility I now would say I have a lot to share. Mostly though I want to just be there to listen. So much of the support I finally felt was having people listen to me and validate my feelings. I was so sick and tired of the “Just relax and you will get pregnant” or “As soon as you adopt you will get pregnant” comments. Or the disbelief of how much pain I was in during my cycle because none of my family had experienced it that it must not be real. When I was finally diagnosed with endometriosis 10 years ago I was almost relieved because I finally had some sort of proof that I wasn’t crazy and the pain I lived with was real.
I think celebrities who struggle with fertility probably feel that they are in the spotlight enough and do not want to have something so personal out there and potentially receive attacks. However I would rather hear from the average woman than a celebrity personally.
Good point about wanting to hear from an average woman more than a celebrity.
I was private for a very long time. I had to come to terms with my own diagnosis before I was ready to share it with others. A big factor in me accepting my disease was by sharing my story and hearing the stories of others in safe places like my Resolve support group and the Creating a Family Facebook group.
Now that I am open, It’s hard for me to keep quiet. There’s so much comfort and support in knowing about others, famous or not, who have also dealt with infertility. That’s why I’ve been working on my ART of Infertility project, sharing the stories of those with infertility through artwork, portraits and interviews. We have events coming up in Grand Rapids, MI, Los Angeles, Iowa City, and Washington, D.C. The art exhibits and workshops create a supportive community for those with infertility and also work to educate the public.
My hope is that, someday, those with infertility will receive as much support as those with cancer, or diagnosis of another stressful disease will. Both through insurance coverage, and others showing empathy and respect instead of responding with well intentioned but hurtful comments. Maybe then, all individuals and couples dealing with infertility (including celebrities) will be willing to come out of the closet.
Elizabeth, post some pictures from the event on the Creating a Family Facebook Support Group (https://www.facebook.com/groups/40688106167/) It’s a closed Facebook group so that only those in the group can see the posts. I’d love to see them.
Elizabeth,
I would love to hear more about the ART of Infertility project. I am in the LA area.