Infertility, Infertility Advocacy

Don’t ignore the opportunity to share your infertility story.

April 24, 2012

Don’t ignore the opportunity to share your infertility story with others.  The science behind infertility is making huge strides, but infertility awareness is lagging behind.  YOU have the chance to change that, one person at a time.

Many of you are scared or embarrassed to talk about your struggle.  I understand that.  I really do.  And, I know it’s a very personal choice.  However, you can tell your story in a broad sort of way without sharing intimate details. I know being open and advocating isn’t for everyone, but I just wanted to share my story and some things for your to consider.  For me, the benefits outweighed any possible negatives.  But if sharing isn’t right for you, that’s ok, too.  That’s why it’s all the more important for some of us to speak louder.

“Speak your mind, even if your voice shakes.” -Maggie Kuhn

There are so many things about infertility that I can’t control.  So, when I have the opportunity to take action on something that I can control or influence, I will absolutely do it.  Speaking out on behalf of myself and others is my way of having some sense of control over this disease.

Benefits of sharing your story

  • Get support. Many times sharing your struggle with family and friends will alleviate emotional pain for you.  People will stop asking when you’re going to have children.  They’ll understand if you can’t make it to the baby shower.  They’ll be there to support you.  (I know this isn’t true 100% of the time, and for those people whose families aren’t supportive, my heart aches for you.)
  • Educate others.  If you share your story, you will find that many people are woefully uneducated about infertility — what it is, how it affects people, what treatment options are, etc.  YOU have a chance to change this.  You have a chance to elevate this life altering struggle in people’s hearts and minds.  Infertility awareness is very much a grassroots effort and all of you out there struggling are the foot soldiers in this movement. Once people know you are having trouble conceiving…yes, they’ll say things like “just relax” and this becomes your chance to educate them. Look at every misguided comment from others as an opportunity to set the record straight.  I now welcome these comments as it is a way to start a conversation about infertility myths and facts. Can you imagine saving someone else in your shoes from having to hear “just relax?”  How amazing would that be?
  • Find others. You will make yourself known to all of the people you already know that are struggling with infertility.  Both of you were silently suffering on your own.  You can bet several people will contact you to tell you that they, too, are experiencing infertility.  This is a blessing to both of you. If you hadn’t spoken up, neither of you would have known about the other.
  • Make change. You have a real opportunity to make change.  Speak up!  You can email, call or visit with your local and national representatives and senators about legislation affecting infertility and adoption.  Every year, RESOLVE sponsors an advocacy day in Washington, D.C. during National Infertility Awareness Week (NIAW).  Nobody else is going to do this.  We have to speak out or nobody will.
  • Reach out.  Now that it’s not a secret, you can “like” infertility related pages on Facebook, etc. to stay informed about infertility news and efforts.  You can also reach out to others and participate in discussions without fear of being found out.  Of course, there are many private forums and groups as well.
  • Blog about it.  Many of you already blog about infertility, but open it up to an audience beyond just others going through the same thing. Everyone needs to hear your story. Consider sharing with friends and family.  They could learn a lot from you.
  • It’s cathartic.  Talking about your problems, whether to friends or online is cathartic.  When I talk about my problems over and over, it becomes old news and gives me the strength to move past it.  Writing for me is especially helpful…sometimes after writing a post, I feel a huge burden lifted from me.  “You can’t start the next chapter of your life if you keep re-reading your last one.” – Unknown

Overcoming the potential negative aspects

You are in control.  You control what to share, whom it share it with and when.  While people are aware of our infertility in general, I don’t always share details about treatment with everyone. For me, it’s hard to share good news and so I decided to dial it back a bit when discovering that we had positive pregnancy tests, etc.  I think it’s easier for me to talk about what’s happened, as opposed to what’s happening.  I can talk about the failed IVF cycle after the fact or I can talk about grieving after miscarrying. It’s all up to you!

You can simply say that you are having problems with infertility and leave it at that.  And, you can always advocate for infertility without necessarily sharing personal information.

My decision to share

My husband and I were very open about our problems from the very beginning with family and close friends.  I told them because I needed them to know what was going on with us and I needed their support.  Looking back, I cannot imagine having not told them. I went through periods of depression and if no one had known the real story, they probably would have been even more concerned. My friends and family have been a great support system for us.

As time passed and I realized that the problem was not resolving itself, I told more people — friends, acquaintances, and anyone who would listen.  I blogged openly about our problems and treatment.  By openly, I mean a blog with my picture and full name.  And, finally, I came all of the way out of the infertility closet by posting on Facebook regularly.  And, guess what, my world did not implode.  On the contrary, it was liberating and only good things came from it.

Once I shared on Facebook, so many people sent me private messages and emails telling me that they were experiencing infertility as well or that they had experienced it in the past.  I know several people who came forward that had told no one outside of their marriage, but me.  So, I was happy that I could be that one person they had to talk to about their problems.  Can you imagine how lonely it would be?  It really doesn’t have to be.  No one is in this alone, I can promise you that.

I know that I am sharing information with people who didn’t know anything about the infertility previously or weren’t aware of laws affecting infertility and because they know me, they are sympathetic to the issue now, and hopefully more educated.  Like I said, you can change circumstances one person at a time.

After I became comfortable talking about infertility, I started taking my story to Congress and the General Assembly.  Last year I met with Congressman Goodlatte about the family act legislation and recently I went to Richmond to speak at a RESOLVE press conference and before a Senate committee in the General Assembly regarding personhood legislation.  This week, I’m heading to Washington, D.C. to participate in RESOLVE’s Advocacy Day and meet with my senators and representative about the family act legislation.  Someone has to do this.  Why not me? Why not you?

Specific things that happened to me as a result of being open about infertility

  • On several occasions, people that I talked to were extra sensitive to our struggle because they knew someone else going through the same thing.  This was helpful to me.  Now, who knows how many people I have helped by talking about it? Pay it forward.
  • Because we have been open about wanting to pursue surrogacy, five different women have found me and contacted me through this blog.  You have to tell people what you want to ever have a chance at getting it.
  • We had one potential adoptive situation that came about through our adoption Facebook page.  If we hadn’t told everyone we wanted to adopt, this would have never happened.  And, while it didn’t work out that time, it still could.
  • I’ve been shocked and amazed at the positive feedback from people, even from men.  This support and feedback just fuels me even further to keep fighting. Here’s just a sampling of messages I have received:
    • From a male high school friend: “Keep telling your story, and know how much the stories, and you, are respected and appreciated from the other side of the country.”
    • From a complete stranger: “I was excited to find your website because you have been able to be so open and honest about your experiences…I think we need more of that. Thank you for sharing your story.”
    • From a complete stranger: “I just wanted to thank you for your absolute bravery in speaking at the Resolve Press Conference on the Hill last week. Your testimony was heart wrenching. I wanted you to know how appreciative my husband and I are for your time and emotional energy after all you and your hubby have been through to fight for yours and all the infertile women of VA’s rights regarding our health care.”
    • From a friend of a friend: “Thank you so much for everything you’re doing for the infertility community. It’s people like you that are going to help us get recognition and support to fight this terrible disease.”

Talk about it

Infertility is a disease like any other and my hope is that more of us will fight back by talking about it.  If we are ashamed and keep things quiet, guess what?  The media, the government and everyone else will keep it quiet, too. We have nothing to be ashamed about.  This is part of who we are and the sooner we realize that, the sooner we can fight it.  Together!  We don’t have to share intimate details to tell our story and speak up for the cause.  I’m sure at one time, women were afraid to talk about breast cancer…because, well, it involved breasts.  And, now look how far the breast cancer movement has come.

We need to talk about infertility to educate others and build awareness.  We need to dispel the myths. We need a better standard of care.  We need better insurance. We need support.

We need YOU!  You can put a face and a name to this devastating disease.

Learn more

I wrote this post for RESOLVE’s “Don’t Ignore” blog challenge in honor of National Infertility Awareness Week (April 22 -28, 2012). Learn more about infertility by checking out Infertility 101.

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  • Jenny

    Thank you for this helpful, insightful post! I have been posting about my journey on Facebook, and reading your post helped me find the strength to respond to some well-meant but hurtful comments that were posted on my wall. If I can’t tell people how I want to be treated and what kind of support I need, I can’t expect much in return. But that is so much easier said than done. Thank you for helping me find the strength. Thank you for being a powerful voice behind this vital message.

  • Alissa (MissC)

    What a wonderful post! I found you as a fellow nominee and was looking forward to reading this great blog. I think your words are wise, strong, and correct. It is refreshing to see someone so open about their struggles and plans. I am out of the closet (except on FB) and it has been a good experience. Your words will help a lot of men and women who face this difficult journey.
    Thank you for such an insightful post and congrats!
    MissConception

  • Congrats on your nomination! This is a great post sharing the wonderful benefits of finding some type of support as you go through infertility. I know that for me, sharing my story has really helped in so many ways and made me feel not alone. Im honored to be nominated with you!

  • Alessandra

    Hi Whitney
    I am an italian mother (so I apologize for my spelling) of a 2 year old boy, Leonardo.. After almost 15 years of infertility story I got the best new of my life, I was finally pregnant! My husband and I come from a big family, and even I am extremely happy and thankful for the little Leonardo’s miracle, I still wishing to have more children,, Just before be pregnant I got the HOSS syndrome that you were talking about and I was hospitalized for about a week. I am currently living in Montreal and now I am about to try another IVF in September. This is related to big fear and nightmare because of the danger on having the Hyper stimulation again, and I am no sure if I will be able to do it again of if it will be better to search for eggs donors..I am 40 now!
    I will love to contact you or enter in your blog, but for some reason I can’t find the right link. My email address is a.suzzi@gmx.net
    hope to hear from you soon

    Alessandra
    was great to hear about your story

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