Anyone who has suffered the pain of infertility knows it hurts, but hey, pain is pain, and grief is grief. Right? Infertility grief, in the spectrum of grief, isn’t that bad? Right? Well, maybe not so right.
Dr. Ken Doka, a guest expert on a Creating a Family radio show on Coming To Terms with Infertility Grief, has written over 20 books on grief, 100 journal articles, and edits two newsletter on grief. I guess you could say he’s the go-to-guy on all things grief, and he shed some interesting light on the uniqueness of infertility grief. (Do yourself a favor and listen to this show—see below.)
The Rest of the World Doesn’t Get It
One of the reasons that the pain of infertility is so hard to deal with is that it is often unrecognized by our society. There are even specific scholarly terms to describe this type of grief.
- Disenfranchised Grief: Losses that others do not acknowledge.
- Ambiguous Grief: Losses in which others are not sure you have a loss, but you perceive a loss.
It’s easy to say that whether others understand or even see our loss shouldn’t matter, but this lack of recognition makes it easy to feel that we aren’t entitled to mourn our loss, and mourning does matter. How many times have you heard some variation on the following: Miscarriage is really common. Kids aren’t all they are cracked up to be. Be glad that you have nieces and nephews in your life. You get to enjoy adult-only dinners and vacations. Plenty of people have it worse. Basically the message is: Buck it up, get over it, and soldier on.
The Power of Mourning
Mourning is crucial to healing. Communal mourning has been use since the beginning of time to help people cope with loss. The infertile must take back the right to grieve, but it’s hard to grieve a dream and harder still when others don’t even see that there is a loss. We have done a number of Creating a Family shows with specific suggestions for how to mourn the losses of infertility.
My Pain is Bigger and Badder Than Your Pain
While I understand fully the intensity of infertility grief, I also believe that comparing pain is futile and insensitive. Should the grief of not being able to get pregnant “trump” the grief of having your five year old die? Is it worse than losing your husband to cancer? This type of comparison makes me squirm.
I do think it helps to understand the particular nature and hardship of infertility grief if only to give us permission to grieve and get support. The next step is to use this understanding to become more sensitive without judgement to all those who are in pain from whatever cause.
I can’t recommend enough the Creating a Family show with Dr. Ken Doka, author of many books, including Disenfranchised Grief, and an ordained Lutheran minister; and Kris Faasse, MSW, and the National Director of Adoption Services for Bethany Christian Services.
Have you found it hard to mourn the loss of your fertility and genetically related children? What helped?
First published in 2013; updated in 2017
I was (still am) struggling with infertility. I clenched my jaw so hard in my sleep that several of my teeth moved. I was explaining this to my dentist and told him about the stress, depression, and anxiety from infertility that led me to this point. He told me that I needed to put things in “perspective”. He went on to explain that, “There are children dying of cancer…” I guess therefore I should not be upset about my inability to become a mother…
I’m so sorry Michelle. There are so many folks who don’t “get” the stress and pain of infertility and miscarriage. I well remember the insensitive things said to me when I lost a pregnancy. I’m glad you found this resource. If you aren’t already a member, consider joining our Facebook community, where you’ll find many others who can identify with your struggle and give you a safe place to express it and seek supports: https://www.facebook.com/groups/creatingafamily/
At least those people with the cancer ridden children got to have children. I understand your pain. If only we could stab jerks like that in the face.
That’s the problem with “the pain Olympics” isn’t it? Someone always comes out as a loser. The comparisons help no one and often bring out the worst in us. I’m so sorry for your pain, I’m so sorry for the insensitive and horrible things said to you both. I hope you find healing and peace.
If you are looking for a community of folks who “get it” and are in the same journey you are in, consider our online group: http://ow.ly/8o2f30jxqfP
OMG. You people are stupid saying parents who lose children to cancer are lucky because at least they had a child….. seriously I am sickened. What self absorbed lives you lead. I have suffered all forms of child loss, an ectopic pregnancy, a stillborn beautiful baby boy at 24 weeks and the unfathomable loss of my precious 17 year old son on Christmas Eve 2017 when he was knocked off his bike. Believe me there is no comparison, I still grief my babies but losing Fin has ripped all our hearts out never to be fixed. I am just surviving for my daughter who has suffered more than any child should seeing her family destroyed. I can’t wait until my life is over and this constant pain ends until then I function like a robot with no joy or happiness in my life. Grieving for babies who have never been is NOT greater than losing a child and certainly not greater than that felt by parents watching a child die from cancer. Shame on you all. Just wow.
I am so sorry for your losses. I cannot even imagine the pain.
Again, there is no winner when we engage in pain comparing. It’s brutal to endure such loss — and I think we inflict more pain upon others and ourselves when we fight so hard to prove whose pain is worse.
Best to you as you move forward. May you find peace and comfort.
Just wow to you for being so insensitive. The comparison about losing a child to cancer was insensitive too but your comment tops it. Sadly.
Don’t expect sympathy if you don’t know how to serve it. That’s all i can say to you.
Hi Kelly,
As Debbie said so well below, “…comparing grief to decide whose is worse makes me uncomfortable, but highlighting that we all need to respect the grief and mourning people are going through–regardless of the source of it–is an important message. We all just need to be kinder and more supportive to each other and honor the journey everyone is on.”
I choose to offer kindness to folks like Carrie because I have no idea how she got to this hard position/viewpoint. When we play the Pain Olympics, no one wins, right?
Best to you and thanks for reading!
Agreed
Margaret, what a callous thing someone said to your mom [“Well at least you didn’t get to know him. Be glad you lost him young.” ]. Maybe the hardest part of her grief was that she never had the chance to know him. Honestly, sometimes people can be so clueless.
I think the best thing you can do when anyone has a loss is “I’m sorry for your loss”. When you tell sometime their loss is imaginary or not real it dismisses that loss. A loss is something very real. When someone loses a pet it’s a loss. When someone losses a marriage it’s a loss. When someone finds out they are infertile that is a loss. When someone loses a pregnancy that’s a loss. When someone loses a living child that’s a loss. They are all different types of loses that effect people differently. Comparing one loss to another’s accomplishes nothing and just makes the person who incurred the loss feel worse.
Marilynn- I will not argue with what you have said. There are losses that are harder or worse. What I got from this blog post is that we need to acknowledge that all losses big or small are real. You are correct that it is tacky to comfort someone who has lost a child by comparing it to the loss of a pet. (I’ve heard well meaning but clueless people do this.) That being said, I don’t think it’s right when someone is grieving to say, “Well your loss isn’t as bad as it could be, get over it.” My mom lost a baby (my little brother to SIDS) at age 6 weeks. Someone actually said to her, “Well at least you didn’t get to know him. Be glad you lost him young.” Sure losing and older child would have been worse, but her loss was bad enough. I won’t pretend that my miscarriages were the same as my mom losing a baby, but having gone through that I have a greater appreciation for her strength and a glimpse of understanding the pain she must have been in when I was a young child.
This is a great topic and frankly one that needs to get aired. I know what it feels like to have that dream of a bio child with your spouse and loose it recurrently through miscarriage 13 miscarriages. It hurts terribly. I know what it’s like to get all the way through pregnancy and deliver a child that died the same day that died in my arms. I know what its like to wonder why god was so cruel to have milk come in my body after he was already gone. They put a leaf and a tear drop on your door to your hospital room when your baby dies at birth. Let me say this having a real born child die and be buried hurts more than the loss of an almost child through miscarriage. Of course it does because I really lost a living person. And a mother who had raised her child a year would have a greater grief than me and a woman who had raised an adult child and lost them would have a greater grief than someone who’d lost a one year old. We can muse about nobody’s grief being worse than another person’s grief but in the real world nobody would try to comfort someone who’d just lost a child by comparing it to the loss of a family pet or to the loss of miscarriage its just not a comforting comparison to make. Its horrible being told that the only child you’ll ever have is the one you just buried. Its horrible being told that its to dangerous to carry a bio child that you should ‘move on to donor egg and surrogacy’ horrible.
…
[Marilynn, I deleted the rest since it wasn’t directly on the topic of Infertility Grief, and I felt it would lead the discussion off to another topic that is best on a blog about that topic. I hope you understand.]
Personally, I’ve been through a hell of a lot in my life. From sexual abuse to family insanity to rape to drug addiction to abusive boyfriends to divorce – I mean, a lot. NOTHING was as painful as my years of infertility and miscarriage.
I find this particular conversation so inspirational/hopeful as well as painful… Having had multiple losses in childhood in the 1970’s (mother, at age 12, etc when people did not discuss things in my world), I know how hard it can be when there are no adults around providing role models for dealing with grief/loss –or even acknowledging the loss exists. To me, the fact we are willing to address our feelings of loss/grief related to not (yet?) having kids as we envisioned is meaningful to me for so many reasons. Not only are there so few places for me to share this particular kind of grief but I believe (hope) that this process of grieving (via this particular online conversation, for example) can actually help those we love including any future children by helping me learn how to model grieving no matter how hard.
“That being said, I don’t think it’s right when someone is grieving to say, “Well your loss isn’t as bad as it could be, get over it.” My mom lost a baby (my little brother to SIDS) at age 6 weeks. Someone actually said to her, “Well at least you didn’t get to know him. Be glad you lost him young.” Sure losing and older child would have been worse, but her loss was bad enough.”
I’m sorry, Margaret, that someone said that to your mum. As for whether losing an older or younger child is worse, Iwould imagine they are just as bad for opposite reasons – losing an older child would be hard because you “know” the child, losing the younger child would be hard because you haven’t gotten to “know” the child.
As for infertility grief, I do read IF blogs and I can see how soul-destroying it is and always hope that their dream comes true.
I do know that it does seem like adoptees and birthmothers don’t care about the grief of infertility but it isn’t that. It is just that when one is on adoption forums, reads blogs, look at adoption agency sites, look at adoption counselling programs etc etc, it does seem that the only grief “allowed” in adoption is infertility grief – bmoms can feel a small amount of grief but “too much” is considered selfish:
http://reformadoption.com/Advocacy/InfantAdoptionTraining/AdoptionPracticesInTheHumaneWorld.pdf
As for adoptees, any negative feelings are just sour grapes. We should just heed the words of the Christian Adoption Services (not an agency but the Adoption arm of the Christian Legal Society):
“To take two separate tragedies–an unplanned pregnancy on the one hand, and a couple grieving over an infertility problem on the other–and to combine them in such a way as to solve both problems simultaneously, is exciting beyond words. Adoption lawyers get to witness the miracle of grace on an almost daily basis. Through grace, the birth mother makes a painful but heroic decision and is granted the strength to see the decision through. Also through grace, the adopting parents accept a child into their home and bestow on that child their name, their material possessions and the fullest measure of their love and affection.
A special bond exists between birth mothers and adopting parents. They have together, through teamwork of a most magnificent kind, created a human being with a soul and personality, in a way which neither could have accomplished without the other. There is no greater human example of grace”
Wow, I didn’t realise it was adoption that made me a human with a soul and personality! Kewl!!!
This is such a good topic and something that comes up every once in while in TTC support sites. There are arguments about whether it is harder to be dealing with miscarriage, primary infertility, secondary infertility so on and so forth and it gets really heated – as if it is a competition about whose grief is the worst. I think when you are wrapped up in your own misery (as many of us are in our own journey through infertility), it is easy to feel like your pain is the greatest pain in the world. We should all recognize that we are kind of in the same boat here, and support each other on this unexpected bumpy road to parenthood.
AnnonT-AMEN!
I don’t think we can quantify or compare grief. There are all kinds of grief issues and feelings and they affect different people in different ways and different intensities at different times. People generally don’t understand loss and grief and often say incredibly dumb things, it is true, and that doesn’t help.
I took a workshop for working through infertility, and one of the speakers said that having infertility is as stressful as having chronic conditions such as cancer. As a sufferer of secondary infertility, I’ve had people say to me, “Can’t you just be happy with what you got.” It’s not that simple. In my heart, I am meant to mother multiple children. I want my child to have a sibling. I consider my failed IVF cycles to be miscarriages, because we saw embryos made in a petrie dish, we were given hope, and then our hope was taken away. Those losses were very traumatic for me and my husband. I also hated that my body had been manipulated with needles and drugs only to result in nothing.
Agreed 100% with what Debbie said above, and I can’t really add much to its spot-on brilliance. Debbie’s point above that “we need to remember that our children will very likely have grief and some sort of mourning that will need to be done in order to move past the loss of their birth family. We can’t compare it, diminish it, or make it go away through love alone.” is especially true when adopting children older than toddler age through the foster-care system.
Again, not to minimize the pain that children adopted as babies or even toddlers feel when they discover they’ve come from a biological family they may not even have met, but the complications and trauma that kids adopted from the foster system have experienced (abuse, negligence, removal from the only home they’d known, being bounced around from house to house) are compounded with the loss and grief that comes with being separated from a biological family for a lifetime.
As a fost-adoptive parent myself who has experienced this first-hand, I must also add that children who are adopted from foster care are rarely–if ever–going to see their adoptive parents as “rescuing” them from a bad situation. If anything, fost-adopted kids may even feel anger, hurt, confusion, and a myriad of other painful emotions at being removed from their biological homes and families and placed into another family’s custody for life.
Also, remember the old expression “blood is thicker than water.” Despite the abuse, neglect, and other circumstances that led to the children being removed from their homes, they may still feel grief and heartbreak at losing their “real” mom or dad. We’ve experienced this with our own children–even the target child of the biological household abuse has idealized his biological parent and misses him to this day, six years on. We are helping him as much as we can to heal and overcome that grief enough to live a happy life, but it is also important that we remember it may be something that takes a lifetime to completely heal…and to be sensitive to our children’s needs around that grieving aspect.
Any type of grief, it seems, people are going to shy away from or want to remind you “who has it worse” It would be nice if people could just acknowledge all losses- be it the loss of your fertility, a much wanted baby, a failed ivf cycle or adoption. I’ve run into this recently, after battling IF for 3, 4 years, I then battled my body over osteoarthritis….which has brought up alot of my old Infertility pain. I’ve learned that people don’t want to hear your feelings about ANY loss……its just easier to say you are “fine” and put a smile on your face.
I’m not sure grief can be measured in the same way. I lost first my dad (broken hearted and cried for 2 yrs.) and then later my mom (had extreme anxiety for years before I could actually cry it out and grieve her loss). Today I am better about my dad but not my mom whom I miss everyday. Grief affects us all differently in each situation.
This is one of those times when I realize I feel this grief differently than others. Perhaps because infertility runs in our family and I had all the right characteristics (jackpot?) we were mentally framed for it already. Maybe it’s because our answer came relatively quickly, and we stepped off the ART path early. I will not say that it hasn’t been hard and doesn’t bite me in the butt from time to time, but it is not consuming. We lost a dream and a hope and a vision for what we expected to be a path to parenthood, and I felt betrayed by my body and had to get past some deep-seated feelings on what defines being female and what defines being a parent. However, I would never compare it to the grief of learning a family member with a young child had a terminal diagnosis. That his loss would mean that his wife raising their child without his father and without being able to do the things they’d hoped to do. That this kid would only grow up knowing his adoring father’s face only from pictures and never remember his laugh or the feel of his hugs. That grief…oh, that grief cut deep. He survived (thank you, clinical trials!!!), but the shadow of that plays out in the extended family today in a way that my infertility does not haunt our immediate family.
All that being said, I will never, ever deny the grief that others feel and experience as a result of infertility. It is obviously terribly deep and hard for many, many people and it’s awful that people think it can be shrugged off or ignored or just gotten over, lah-di-dah. To those in pain, I can only say that I hope you find peace or at least a balance point.
This is a really good topic.
I agree with what a lot of you have said that it’s hard to compare who has had it worse. I think like others that it’s not what’s worse it’s just different. For us we received my diagnosis pretty quickly. With their being nothing that could be done we decided not to pursue any treatments. Not that it’s been easy because it hasn’t but in reading other people’s stories of unexplained infertility, going through treatments and miscarriages I consider my wife and I lucky that it could have been a lot worse. I can’t imagine what it’s like to not have answers (though I question why I was born sterile) or have my hopes up that treatments will result in conception or to lose a pregnancy.
I believe the most important thing to do is for each person to not try to make their story to be more painful and just listen to the other persons story. Being respectful and empathetic is the key.
Exactly, Dawn. I lost my dad 6 months before I had a 6 hour surgery (which was surgery #5 for endometriosis). My family members got frustrated with me, but I had to deal with my grief from the loss of my dad (and his long health battle), + an extensive 6 hour surgery for a disease that people think is easily cured by birth control pills, turmeric or acupuncture! The holidays I had to spend grieving the first thanksgiving without my dad while recovering from a 6 hour surgery followed by a 5 day inpatient stay. not to mention the infertility……….knowing that my dad would never meet his children. in a very weird, twisted way, the loss of my dad was slightly easier to deal with than anything that I’ve faced with endometriosis or infertility because at least people could relate to the death of a parent so I had some support.
Shalisa, many people feel guilty for saying that the death of a loved one was easier than dealing with infertility and its causes such as endometriosis, but it makes such sense. At least with death, people rally around you. You have mourning rituals. You have understanding. With infertility and chronic diseases–not so much.
I’m sorry for the loss of your dad, and I’m sorry you suffer from endometriosis.
I have read, somewhere, orders of grief placing losing a child as number 1, infertility #2, losing spouse #3, then parents and so forth. Other lists do not even include infertility. It seems like to me within each category there would be variations…is losing a spouse of 50 years going to cause more grief than a miscarriage? Is losing young child going to cause more grief than losing an adult child? Does losing a parent at age ten hurt more than losing an elderly sick parent? Then there is compounded grief…I lost a grandpa, got married, and lost my dad suddenly within the same month. A counselor explained that even a joyful event like marriage added to my grief at that time. Marriage is such a change and a separation from family. So, I agree that it does seem uncomfortable to compare or rank grief. It is so hard to know the circumstances of what an individual person has already dealt with when the latest grief struck. That being said, finding out biological children were an impossibility for us, did feel like I lost all my children. I thought I had grieved through it and we have since adopted. As I want to adopt a second, I feel all those feelings of grief come back, Like a relapse. So despite the uncomfortableness of comparing grief, To the outside world, I. Feel like I need to share and cling to my list, “look see, it says right here finding out you cannot have biological children hurts almost as much as losing a child”. I need to share the proof to be validated and heard. If I let go then others might feel like they were right to think I never hurt in the first place. It’s unhealthy but that’s where I am at.
I apologize I haven’t taken the time to read through the whole post yet or the comments, but based off of the question alone, which I’ve thought of a lot, I’ll say this:
First of all, no. Our loss of potential bio children has been devastating and insanely hard, but we’re surviving and sloooooowly getting over it. However, I know for a fact that if my husband were to die, I would die, whether for real or figuratively, and I’m not sure if I could ever quite get over it.
BUT, the real answer to the question is, I don’t think ANYONE can really decide which grief is “worse” than others. They’re too different to compare to each other.
To be honest, a part of me gets very irritated that I have to compare my grief/problems of knowing I’ll never be able to have a bio child with the grief of others who can get pregnant but are having troubles doing so. I’ll get to thinking, well at least you guys don’t have reason to lose all hope, you haven’t been told it’s 100%. But in reality, the two things are SO different from each other that you can’t compare them. They’re both terrible, but just not remotely the same thing, despite both being related to TTC.
And frankly, the only thing I’ve been able to, in my mind, compare total loss of fertility to is a miscarriage. I feel like I’ve literally lost “all of my children” (my children meaning in this case of course biological children). I’ve never stated that before because I imagine someone who’s lost a literal child, whether in utero or during their life outside of the womb, would be too devastated over their loss to not be offended by it, but when I get to watching home videos of me, or seeing pics of me and/or my hubby as children, I absolutely feel like someone has died, and I’ll never be able to see them if that makes sense.
Anyway, sorry for rambling on, I know not all of this was totally relevant to your original question, and sorry if not all of this makes sense.
Debbie, ditto to what you said.
Great post. Sometimes I wish people would also discuss that people might have had multiple losses throughout their lives and that can also produce even more intense emotions. For instance, coming to infertility after a two decade battle with a debilitating illness is very different from being TTc without such a history. I am not trying to invite controversy. All I’m saying is that it’s possible that those in tge former situation would have a lot less reserve than those in the latter. And that not all infertility has the same path (though all can be difficult). It’s similar to someone having had an illness since their teens who had to mourn many losses versus someone who is first diagnosed on their 40s.
Shalisa, good point. I often think of this with miscarriage. While all miscarriages are sad and most often cause grief, I think it is often harder for someone who loses a pregnancy at 8 weeks after having gone through years of infertility treatment than for someone who gets pregnant easily. Not that we should dismiss anyone’s pain, but it helps explain why some people react so strongly to what other perceive as a fairly common occurrence.
Like you said, comparing grief to decide whose is worse makes me uncomfortable, but highlighting that we all need to respect the grief and mourning people are going through–regardless of the source of it–is an important message. We all just need to be kinder and more supportive to each other and honor the journey everyone is on.
And especially as adoptive parents, we need to remember that our children will very likely have grief and some sort of mourning that will need to be done in order to move past the loss of their birth family. We can’t compare it, diminish it, or make it go away through love alone.