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 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:
It can be awkward and scary to step into someone else's pain, but it's so important. Please validate the infertility journey and come alongside the ones who walk this path.
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.
It can be awkward and scary to step into someone else's pain, but it's so important. Please validate the infertility journey and come alongside the ones who walk this path.
Such a well written post, Emily! Thank you for sharing!
ReplyDeleteThank you for posting this!!!! I have these thoughts swarming in my head every day, and it only validates them more to hear someone else say them out loud. Good luck on your journey, we are all here fighting beside you!!
ReplyDeleteBrianna
keepingupwiththekeens2428.blogspot.com/
Great post, Emily! My hubby and I recently suffered our second miscarriage in just 8 months and it really threw me for a loop. After the first one, I thought it was just a normal thing and I would be able to have a healthy baby the second time around. But after our second miscarriage, I felt strongly that I needed to share and talk about infertility and recurrent miscarriage. Although it is hard, it's amazing what an amazing community of women there are in this same boat, and once we talk more about it we can support one another. Thank you for sharing your heart!
ReplyDeleteGreat post!
ReplyDeleteVery well written. I agree with all of this & you told it so well. Thank you! :)
ReplyDeleteWell said. The "you can borrow my kids anytime" spiel is particularly disturbing to me - while i know it's just an expression and people aren't thinking about what they are saying, the gaping hole of never having held, played with, cherished, and yes, even had to discipline, a child is a bottomless cavern of despair. You make a lot of the same points I've made in a lot of my posts related to infertility - definitely going to checck out your blog, Emily. Thanks for sharing.
ReplyDeleteThank you so much for opening up your blog to me, Katie! I appreciate it so much. And thanks to those of you who read and commented. These are such important issues and it feels really great to see so much dialogue going on about them during National Infertility Awareness Week.
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