My best friend got divorced this past Monday and I was her witness. I spent the night at her house so that I could distract and support her and so that we could arrive at court together. Another friend of hers joined us on Sunday night – a woman from her neighborhood who was set to undergo a double mastectomy on Tues. We were a jolly bunch!
During the course of the night this friend expressed something interesting. She told us that when she was with other woman who were breast cancer survivors or with women in the process of treating breast cancer she felt dismissed – her cancer wasn’t “bad” enough, she hasn’t had chemo or radiation, she hasn’t had a recurrence. She spoke of feeling terribly alone in her process because people without cancer didn’t understand, but people with cancer – presumably the folks who would know what she was feeling and experiencing and help her along the way – were not very supportive.
I can’t speak to the experience of having breast cancer or being a cancer survivor, but the description resonated with me because of its similarity to the infertility “hierarchy of suffering”. Here is a breakdown of many of the possible iterations of fertility issues –
- You had trouble getting pregnant but got pregnant eventually.
- You had a child (or children) but then experienced secondary infertility.
- You had trouble getting pregnant but got pregnant with limited medical intervention (IUI, Clomid, etc.).
- You got pregnant using IVF and it worked the first time.
- You got pregnant using IVF after 2-3 tries.
- You got pregnant and lost the baby but got pregnant again and had a successful pregnancy.
- You got pregnant using IVF but it required many rounds of treatment.
- You experienced recurrent pregnancy loss followed by a successful pregnancy.
- You got pregnant using donor eggs.
- You have never successfully gotten or stayed pregnant.
If you’ve been around the infertility world for any length of time you could put these into an order, a hierarchy of suffering. And that order would be based on many things, including your own experience. I can shamefacedly admit that I’m guilty of being (inwardly) dismissive of some of these experiences, as if they have less importance or value than my personal experience. I think it’s natural to feel that people who have endured “less” than you can’t possibly understand the pain and anguish you’ve felt. How can a women who has never experienced the loss of pregnancy understand recurrent pregnancy loss? If IVF worked for you the first time how can you possibly understand what it’s like to endure round after round of unsuccessful treatment? While I think that these are natural reactions I also believe that we need to fight against this instinct. All of these scenarios are difficult. Women in all of these situations need and deserve our support. There should be no hierarchy to suffering – everyone has their own process, and everyone handles these challenges differently. My friend with DOR did 3 rounds of IVF without a successful pregnancy and happily moved on to adoption without regret and without giving it another thought. I did 3 rounds of IVF with 1 loss, successfully got pregnant using donor eggs and I am still suffering from grief, loss and shame.
As someone who has run the gamut of infertility and had to resort to something outside of the common experience even in this community (donor eggs) I fall high on the “suffering scale”. I am guilty of feeling that people who have had early success can’t possibly understand my process. I want to change that. I don’t want anyone facing infertility (or pregnancy loss) to feel like they don’t have allies in the community or to feel like they’re outsiders simply because they haven’t suffered enough. That’s ridiculous. So please, if you’re feeling isolated, if you’re feeling alone, if you’re scared and uncertain – get in touch with me. Leave a comment. I will stand by you and hold your hand. We should all be in this together.
I’ve got your back.
Hope is something you pee on 
Miscarriage with donor eggs? I identify with much of this post. Thanks for sharing xxx
I’m so sorry – what a heartbreaking loss. Is there anything that I can do?
Wonderful. Wise, wise words. I’m with you. Like when a woman who has miscarried is asked, “How far along were you?” right away—and the more weeks pregnant she says she was, the more sympathy the person gives her. As if each week of pregnancy means you deserve more support, and your tears are increasingly valid the further along you were. Crazy. Some people have been speechless when I’ve told them about donor egg—maybe they are inwardly judging me, or maybe they are horrified by how much they think I’ve suffered, or maybe both. I want to tell them how happy I am that I was able to become a mama at all and I feel lucky, not cursed, to have been able to use donor eggs. Everyone experiences their experience differently—what happens is not the issue, it’s how we experience what happens. But I, too, am guilty of not feeling much when I’ve heard a woman got pregnant after three rounds of IUIs, or even IVF—totally and completely forgetting how devastated I was when I first entered this world and was doing IUIs myself. Or when I hear a woman has had a miscarriage, and my inward thought sometimes is, Try six miscarriages, and catch myself. It’s human, but good to correct it in the moment we have those thoughts.
EXACTLY – that’s the perfect example. And you’re absolutely right. It’s all about how we experience it. I recently saw a quote that I LOVE. “The same boiling water that hardens the egg softens the potato. It’s not about your circumstances. It’s about what you’re made of.”
Oh wow, I’m going to remember that!
It is ironic. I *hate* when people compare my grief to theirs when I say I have a daughter that was stillborn. But I compare my experience with loss and infertility (inwardly) all the time. I need to stop and thank you for posting to remind me that it is ridiculous. All of it is awful and deserves empathy. Thanks for this post.
Thanks for your response. I think it’s impossible to not compare – for me it’s just a matter of trying to remember that everyone’s experience is valid and everyone’s pain is real. I’m so sorry for your loss and for your struggles. Hugs and love to you, friend.
I’m new to your blog & by the end of reading this entry, I was sobbing. But, it’s a good thing because I’ve spent years doing anything and everything to repress these feelings. You are exactly right and articulated so beautifully the issue of “hierarchy of grief”. I got pregnant with my son the first month we tried, the 1st month off b/c pills in 15 yrs. Little did I know that once off the b/c pills, all hell would break loose-endometriosis, PCOS. So we did years and yrs of infertility treatment, 5 surgeries to remove endometriosis, series of IUI’s, followed by iVF, all unsuccessful. Last fall, I had to have an emergency hysterectomy & that’s when I broke. Well meaning people say, “everything happens for a reaaon” & “well at least you have your son”. But some days it feels like I will never be whole. Your article identified one of my greatest struggles. I have a beautiful, incredible 11 yr old son who is the light of my life. And I have struggled, feeling so ashamed of my grief & inability to heal, bc there are so many who have no children. Not a day has passed in 11 yrs that I haven’t felt grateful for my son. But, being unable to have more children is still a loss that has almost swallowed me whole. Recently, my frustrated husband said “you can’t grieve something you never had!” All of you reading this know how wrong this statement is- bc if you’re like me, you did have it. And then it was gone. Thank you for your willingness to write this blog and articulate the thoughts and feelings of so many of us.
My heart is breaking reading this. I’m so sorry to hear about your struggle and about the very real and very significant loss of having other children – another child for you and your husband, another grandchild for your parents, a sibling for your son. It’s devastating. You want to snuggle every baby that you see, you cringe at every birth announcement – and it hurts because you had that and you want it again and you know you’ll never have it. I understand how you have a picture in your mind of how your life and family will be, and how if that image doesn’t come to be, you can never quite reconcile yourself to the new, incomplete picture. And that’s ok! You are big enough and complex enough to be full-soul, whole-heartedly grateful for your son and still feel incomplete. You can love him with all of your being and still wish for another child. That’s allowed. You have room for all of those things in your heart.
And it’s so shockingly unfair that other people can stumble into what we so desperately want and what we work and work for and then they don’t even appreciate it. It’s heart wrenching. But that’s one reason that I wrote this post I guess. I needed to remind myself that everyone has a story, and a secret loss, and an aching hole in their heart. I know that may own pain has, at times, been so huge and all-consuming that I can’t see past it to the reality of others. But I see you. I see your pain. And I understand. And I’m so so sorry. Thank you for your comment and for sharing your story, sister-friend.
On a side note – I can understand that people want to help and that they want say something rather than say nothing, but the “everything happens for a reason” is never the thing to say! Not ever.
Thank you for writing this. It’s what I needed to read. Also, thank you all for the comments.
Sometimes I think I don’t deserve to feel the level of grief I feel about my infertility because someone else went through worse, or because it’s not something that will kill me. No one died. But it feels like they did. And it doesn’t matter what my circumstance is–it still feels like death.
I understand. It’s amazing to me that some people get an infertility diagnoses and just keep on keeping on. For me, it felt like the end of the world. I’m sorry you’re in this place but know that it’s ok to feel how you feel. I’m here if you need me!
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As a man who detected testicular cancer (on both occurrences) early, people don’t see that I’ve suffered. The treatment was without the chemo or intensive radiation therapy – I simply had (on separate occurrences) my testicles removed. I understand that it could have been worse and that to, say, a woman who has had breast cancer and suffered mastectomy and rounds of chemo my story is not all that profound and that all I have to show for it now is an empty sack. Totally understandable view. But it’s still a cross to bear.
I’m so sorry that this happened. Silent stories that go untold and unnoticed are the hardest to bear, I think. Thank you for sharing your story.