Thursday, April 25, 2013

join the movement...validate

I'm realizing more and more that I am a voice for infertility. I'm not a loud voice or an especially unique voice or a brilliant voice or anything like that...just a voice. Many issues are close to my heart - the education of women around the world, racism, fighting the stigma surrounding mental illness...the list goes on.

But right now, infertility is my focus. Maybe it's because I'm in the procreating stage of life. Maybe it's because at least every other day, I hear from another woman who is struggling through infertility and loss. We are 1 in 8. We are everywhere.

But I've got to be honest. Sometimes, in moments of self doubt, I wonder whether my cause is worthwhile. Don't get me wrong. It's important. That's for sure. 

But it's not cancer.

It's not AIDS.

It's not domestic violence.

It's not starvation or malaria or sex trafficking. 

It's not killing anybody.

And maybe that's true. Maybe deaths directly related to infertility are extremely rare. Maybe it's never even happened. But if that's our measuring stick - whether anyone dies from it - then aren't our standards pretty low?

Infertility may not steal lives from this earth but it does steal dreams, joy and life savings. It steals emotional stability. It steals friendships and even marriages. Infertility can steal our self esteem, our careers, even our faith.

I remember reading a study that states that the rates of depression and anxiety in individuals suffering from infertility rival those of patients diagnosed with other very serious diseases, including cancer and hypertension. Infertility is an excruciating journey, one that seems to swallow our lives whole. It's surrounded by stigma and ignorance. Infertility diagnoses such an endometriosis can cause debilitating chronic pain. Polycystic ovarian syndrome can make it very difficult to maintain a healthy weight, which in turn can contribute to all sorts of physical problems. In certain cases, miscarriages and ectopic pregnancies can be extremely dangerous to the health of the mother. 

I also want to make the point that people are dying from infertility...our children are dying. After miscarrying our son Ethan at 19 weeks, my doctor told us that my specific infertility diagnosis played a role in his death. I've read many definitions of infertility that include "recurrent miscarriage" as a factor. We, as an infertility community, are losing babies every day.

But despite all of this, I know that many of us remain unconvinced that infertility is a big deal. Insurance companies still put infertile people in a category with those seeking breast augmentations. We still hear things like, "You can borrow my kids any time!" and "Maybe you're just not doing it right." Like I mentioned earlier, sometimes even I, as a self-proclaimed voice for infertility, struggle with doubts about whether I should be focusing my efforts on something...bigger. But earlier today, a thought dropped into my brain that will stick with me forever...

Those of you who have children, grandchildren, nieces and nephews...imagine with me for one awful moment what it would be like to lose them...to cancer...or a car crash...or a senseless act of violence. Imagine the devastation of that loss. Imagine the grief that would sink deep down into your soul and just stay there. Imagine the anger. Imagine the loss of joy, of faith, of purpose.

Now, instead...imagine never having had them at all. Imagine that they were never here, that those precious lives never even existed. That you were never able to touch them, talk to them, read to them, play with them. Imagine that they never had names, never had personalities. Imagine never being able to bury your laughter in their hair or see their picture hanging on your wall. Imagine that they were...nothing. But this isn't just a blank, benign nothingness. This is the type of nothingness that leaves a gaping, aching hole in your heart.

That's what it's like to have infertility. That's what it's like for the countless men and women for whom the most expensive, invasive treatments never work. That's what it's like for families who stay on the adoption waiting list for years and never receive a match. That's what it's like for couples who miscarry over and over. That's what it's like for families who know in their hearts that they were meant to have a large family but every evening, they set the table for only three or four.

That's why it's so important to know that infertility is a disease and that our struggle matters. So if you have someone in your life who is weathering the storm of infertility, please validate their journey. If you don't know how to do that, here are a few ideas to get you started:

  • Say something like, "I'm so sorry that you have to go through this. I don't know what it's like to be in your shoes, but I would like listen if you feel like talking."
  • Do a little bit of research on your friend's condition. Sometimes infertile people feel overwhelmed by having to explain their disease over and over and over, so it helps if you start out with even the most basic knowledge.
  • Vow to never give advice unless your friend specifically asks you for it. Oftentimes, suggestions like "maybe you just need to relax" or "you can always adopt" end up doing more harm than good.

Please, join the movement. Validate the infertility journey and come alongside the ones who walk this path.





68 comments:

  1. Wow, you are writing some AWESOME posts this week, Em. Validate. I love it. SO important.

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    1. Thanks Josey! I couldn't think of much to write about when I first saw the theme but then I got inspired. (-:

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  2. Great post! I also loved your "Smile" post. We are important :)

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    1. Thanks so much for stopping by my blog, Brooke!

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  3. So profound! Thank you for sharing this! :)

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    1. Thanks for your kind words Lindsey!

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  4. This is an incredible post that brought tears to my eyes. I too have dismissed this cause (one that has brought me and my family years of anguish) because it doesn't 'stack up' against life threatening illness. I've been in the thick of this for years and this post actually made me reevaluate my own belief and highlighted how important this is. Thank you!!

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    1. I'm so glad that this post helped you validate yourself and your own struggle, Shelby. I'm so sorry for all that you've gone through.

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  5. Amazing blog post!! Thank you for so perfectly explaining how infertility impacts our lives forever. It's easy to start feeling like maybe I'm just being "a little dramatic" but in reality if everyone had a taste of IF, they would view it quite differently. (Not that I would ever wish these issues on ANYONE!!).

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    1. I have had those same feelings about being overly dramatic. Our pain is our pain. I don't know why we feel the need to measure it. I'm really working on stopping those thoughts when they start playing in my head.

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  6. Thank you for this. Too often, people shut down ALIers by using the excuses "well at least you don't have [insert disease of choice here]." What I've found, though, is that those who are suffering from any of those diseases manifest many of the same emotions and distress as those living with infertility/loss. Equally important, as you pointed out, infertility/loss does kill. It kills dreams, hope, relationships and desperately wanted children. Hence it's no less of a serious disease, it's just that it's so taboo.

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    1. I totally agree with everything you said here. So well put.

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  7. this post rocks my socks.
    so well written. and so many truths.
    im sorry for your struggles and i do hope there are many miracles to come.
    i think youre wonderful.
    xxo

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    1. Thanks for stopping by my blog, Sarah! I've been following you for a while so it's fun to see you here.

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  8. Another awesome post, Em!! :) You are a wonderful writing and these type of posts are so important to so many. Thank you for sharing!!

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    1. Thanks for the sweet words as always, Fiona!

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  9. Brilliantly said. It really strikes a cord with me this week - especially setting the table for 3 or 4 - that is what we are looking at as we go through this pregnancy knowing it will be the last time; it breaks my dreams and my heart to know that the large family I envisioned will never be. Thanks for such a great post!!

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    1. I added that sentence last minute because I wanted to be sure to speak to secondary infertility. Talk about being invalidated! Those of us battling infertility the second time around seem to have our stories minimized quite often.

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  10. You know, I decided not to post for NIAW because I wasn't sure what I'd say that was original and/or thought provoking. Then I read this - and it's 100% thought provoking (and original). I love what you said. It's like when people die too you, "I'd rather have known and loved him/her, than to never to have known him/her at all." So true. What a great way to put this, Em!

    You have a gift with words and writing, my friend!

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    1. FYI - I just linked to this post on my blog.

      And I meant when people die to YOUNG, no too you.

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    2. Thanks so much for linking to me! That's the best compliment!

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  11. Ditto to what other commenters have said - great post, great message, great ways for others to get involved and help someone they know who is going through IF. We don't have to stay silent, but knowing how to approach someone is key in my book.

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    1. Totally. I think that a lot of the time, people are genuine and want to be supportive but just need some extra guidance.

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  12. Your post simply amazes me. It's beautifully written. I truly wish I could express my feelings as eloquently as you do. This post made me tear up, because it is all so very heartbreakingly true. I also, linked to this on my most recent post. I hope that's okay.

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    1. Suzanne! You are so, so eloquent! I love your writing and am SO glad I found your blog. Thanks for linking to me. It made my day.

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  13. Validation is so important. I often find myself embarassed to validate secondary infertility in myself. Sometimes I feel embarassed to tell people about my journey because I have one daughter. Because I'm not dying. Because I'm not hurt. Because, from the outside, I look healthy. But,allowing myself validation has been key. It's allowed me to be more of an advocate for both myself and infertility in general. I loved your post. :)

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    1. Yeah, what's the about? Why do we do that to ourselves? Thanks for speaking so candidly about this embarrassment in yourself. I'm right there with you.

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  14. This post is amazing. It gave me chills, because it's all so true. Very well said!

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  15. This is so good. I need everyone in the world to read this. So well said.

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    1. Everyone in the world!?! Whoa.

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  16. Excellent post. And I liked your other ones as well, especially the waiting room one! Thanks for sharing and thanks for commenting on my blog.

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    1. Thanks for stopping by Heather! Good to have you here!

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  17. Excellent, excellent post. The setting the table image really struck a chord with me. You don't stop being infertile just because you have a child (or children). It stays with you.

    Also- I loved your comment on my last post. I really am staying in a very beautiful place right now and your comment reminded me not to take that for granted.

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    1. Keep writing about that beautiful place. I'm living vicariously through you! (-:

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  18. Great post Em! Validation is so important to and for anyone struggling through infertility and loss. Thank you for sharing this! Thank you also for visiting my blog and the kind words you left me there. I am sorry to hear that we have secondary infertility in common, but always appreciate connecting with others who "get it."

    This really struck me in your post,

    "Infertility is an excruciating journey, one that seems to swallow our lives whole. It's surrounded by stigma and ignorance."

    So true and yet, as you say, so few who have not walked in our shoes understand that.

    You are an important voice for infertility! Kudos to you for using your voice!

    I am new here, but look forward to getting to know you/your blog better and following your journey.

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    1. Kathy! Thanks so much for spending so much time writing such a wonderful comment. So sorry to hear of your secondary infertility. I so hope that another child will be in your arms sooner than you think.

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    2. You are so very welcome Em! Thank you for your kind words. Though we struggled with Secondary Infertilty for five years (between 2004 - 2009), we are done trying to expand our family now. Though I always hoped and dreamed we'd have big family, I have come to appreciate our family for who we are, as we are now. I feel blessed and lucky for our two living children, as well as our angels that left this world too soon. Wishing you the best on your journey.

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  19. Lovely post, Em. I wrote letters to each of the babies that I lost, and what strikes me when I read them now is how painful it was (and still is) for me that I never got to name them, hold them, or touch them. You really captured that feeling here. Thank you!

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    1. What a beautiful idea - writing those letters. How courageous.

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  20. You may not feel especially loud or brilliant in your voice for IF, but you definitely are inspirational and heartfelt.

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    1. You're the best Amber. Really, you are.

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  21. I think that you are a beautiful, inspiring, powerful voice for infertility. This post brought me to tears because it just spoke to so many things that I feel daily and that can be so hard to explain to other people. The people who tell me "oh boy, when you are successful you'll wonder what the hell you were thinking!" as they roll their eyes. Yes, I am sure that I will have moments like any other new parent, but I will NEVER regret the fight to have children despite my diagnosis. Thank you for a beautiful post that shows how serious infertility is, even beyond the primary difficulty conceiving or maintaining a pregnancy, and that it is a diagnosis and deserves to be treated as such. Thank you!

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    1. No, thank YOU for stopping by and leaving such a kind comment. And you're right...you will never, ever, ever regret this fight.

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  22. You are a brilliant writer. I'm so glad you are putting into words what so many of us and letting whoever will listen know...that infertility is a big deal and a medical issue. And it should be treated as such!

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    1. Thanks so much Jessah. I so appreciate your kind words, as always.

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  23. BTW...Hope it's okay. I shared this on my Facebook page to drive traffic to your blog so more people could read this.

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    1. OF COURSE it's okay! Thank you!

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  24. Wow. Could not have stated this better. You are such an inspiring writer Emily.

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    1. Thanks so much, Risa. I always appreciate your comments.

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  25. Beautiful post, Em. I'm so glad you shared it with all of us. And you're right, it is killing people, and in so many more ways than just the physical. Spiritually and emotionally so many of us are dying. Blessings to you, dear sister!

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    1. You're absolutely right about the spiritual and emotional piece. Thanks for stopping by, Marcy!

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  26. What a great post! Thanks for coming by our blog as well and for all your sweet comments! :-) I look forward to following your journey and hope and pray that your new treatment plan works. :)

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    1. Thanks Elizabeth! It's always great to have a new follower. Looking forward to following you as well!

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  27. What a beautiful post. I've never seen it all explained so perfectly. Truly touching. I cried through the entire thing, and that's okay :) Thank you so much for writing this post.

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    1. Thanks so much for your sweet comment, Faith. I'm constantly crying when I read blogs. (-:

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  28. Absolutely beautiful and inspiring post. It's like you reached into my brain and somehow put a confused mass of disparate thoughts into words.

    I lost my mom to cancer when she was 48 and I was 19. I've struggled immensely with trying to jive the fact that the pain I feel due to my infertility has been, at times, even more overwhelming than that experienced after that totally devastating loss. Surely, I must just be a selfish ingrate, or something must be wired wrong inside me, that I grieve my unborn children more than I grieve my mom?

    But, over time, I've learned to respect both pains as similar but different. Losing my mom was a progression. Though the pain stemming from the loss of my mother has fluctuated in intensity over the years - getting worse at those milestone moments (weddings, birthdays, holidays) and trailing off a little in the day-to-day - it has always been on a general downward trajectory. It was most intense and visceral as she wasted away, as she passed, as we buried her. In the over a decade since, I've learned to live my life without her and am able to rest upon those good memories regularly, and the terrible ones only momentarily. I've come to accept, as you explain, that having her in my life even briefly was so very much better than never having her at all.

    The hardest thing I've had to accept while battling infertility is that infertility is (at least in this point of my child-free life) a pain with no real end or promise of future resolution. With each failed cycle I grieve, with each miscarriage I mourn, with each medical delay I spiral even further into a seemingly never-ending sadness. Though it hurt far too much to think about at the time, when my mom passed I knew deep in my soul that my life would continue without her. I cried at the thoughts of birthdays, weddings, and (of course) the birth of my children without her by my side. But, as hard as those future projections were to make, I knew those days would come. I would have birthdays, I would get married, and I would, I thought, have children. Infertility robs us of those "I wills" and replaces them with "Will I"s. It's hard to stop grieving when there is no end in sight.

    Thank you for expressing this so much more clearly and succinctly than I ever could!

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    1. My goodness! I think this comment takes the cake for the longest one on my blog! Thanks for taking the time and energy to invest yourself here.

      You are so right about this being an ambiguous loss. With your mom (and again, I'm so sorry that she's no longer here), it was a pretty concrete loss. She was here, and then she wasn't. With your unborn children, it's ambiguous and that can sometimes make it harder.

      Thanks for sharing your heart.

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  29. Wonderful post- thank you for "Joining the movement" and telling your story. So well said. I'd love to share your story on my blog if you are willing. And thank you for your sweet comment on my NIAW post as well.

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    1. Sure, I'd be happy to share my story!

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  30. I love this post. And it takes a lot of voices to make a difference... yours is as loud and important as any!

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    1. Thanks so much for stopping by my blog! And thanks for the kindness.

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  31. What a super post! I think you hit the issue on the head: neither society nor even those of us who suffer from infertility realize how devastating this horrible disease is. I'm still uncomfortable talking about it, because I know people will think I am overdramatizing the situation; you had doubts as to whether this was a big enough deal to advocate. Everyone around us minimizes the seriousness of what we are going through with their well-intended comments, like "You can borrow my kids" to "You just need to relax" to "Hey, it isn't that bad." No, it's worse. And it's time to stop minimizing it...one voice at a time. There. See, Em, you've charged me up... Thanks :)

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    1. Thanks Kelly! Isn't it weird how hyperaware we are of being overly dramatic? I often worry about the same thing.

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  32. Beautiful post! It's so important that we recognize that just because death isn't the first thing we think of when it comes to a condition that it doesn't mean the condition isn't relevant and important.

    I love your blog already! The title is perfect.

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    1. Hi Kim! Thanks for stopping by my blog! And thanks for your comment about my title. I don't get much feedback on it, so it was cool to hear your reaction.

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  33. "Infertility may not steal lives from this earth but it does steal dreams, joy and life savings. It steals emotional stability. It steals friendships and even marriages."

    This is absolutely perfect! IF steals a lot. I also love your advice about what loved ones can do in terms of validation...great stuff. :D

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    1. Thanks Maria! And yep, IF is quite the thief. That's for sure.

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