This Wasn't My Dream: The Disenfranchised Grief of Being Childless-Not-By-Choice

 

I turn forty in a few months. I am highly sensitive; always overthinking; obsessed with cats; good at finding beauty in the details; mostly caring, though occasionally lacking tact; skilled at planning but not always reliable at following through; an introvert who talks a lot. And I am a woman who is childless-not-by-choice (CNBC). 

Five years ago, on the day my niece was born, I wrote about the bittersweet emotions I had regarding her birth. I knew at the time that my health was unpredictable at best and that if we were to take bets on whether I’d improve enough to become a mother within the next few years, whoever bet on the side of hope was likely to lose. And yet, this dream died an achingly slow death, spanning years. Sometime over the last few months, as I awaited the arrival of my nephew and watched more and more women around me become mothers while James and I continued our almost-daily routine of him helping me walk to the bathroom and back to bed, I realized it was time to let go of the dream, the hope, the prayer that I would one day join that club too.

I wish I had better words to describe how hard the past few months of living with this truth have been for me and for James, my husband. There is a prevalent misconception that what an involuntarily childless person experiences is a temporary moment of sadness that flares up from time to time. Simply a quick sting upon hearing that a friend is pregnant. Or a regret that we live with in the same way someone regrets not taking a job when they may have had the chance. I know that it is probably difficult for individuals who aren’t in similar shoes to understand because as a society we aren’t accustomed to talking about the grief of being childless-not-by-choice. Disenfranchised grief is the term for the type of grief that does not fit society’s larger ideas about death and loss. It is not openly acknowledged, socially accepted, or publicly mourned.

David Kessler, who studies grief, says that, in order to heal, grief needs to be witnessed. Mourning rituals allow us to not only honor the dead, but to bear witness to grief. The bereaved will, undoubtedly, grieve their loss in private as well, but there is something special and sacred about being invited into the house, the heart, of those who are mourning. Friends, this is me inviting you in, if you’d like, and asking that you please walk gently beside me.

I’ll admit that I feel a little foolish asking you to acknowledge my loss. If I had lost a living child, I imagine it would feel natural to share my sorrow with friends and family. It would be expected. (I want to be clear that I am not comparing my grief to that of a parent whose child has died; that is a profound heartache I cannot fathom, and I know my pain, though real, is not the same.) I don’t know how to talk about my pain, except to say that it does not feel like the death of one big dream. It feels like the death of a thousand tiny ones, spread out over a lifetime.

I would like for you to know that, like all loving mothers, I dreamed of holding my children. Over the years, James and I went back and forth on children’s names and had settled on a couple. I wondered what their little heads would have smelled like, how tiny their hands would have felt in mine, whether their hair would be curly or straight or take a long time to come in, what it might feel like to know they rely on me. Even now, as I am falling asleep at night, I try to picture their faces and guess what their first words might have been. I dreamed of decorating their nursery, and as they got older, of seeing their own personalities reflected in those spaces. Walking them to class on their first day, teaching them how to tie their shoes, reading bedtime stories, getting splashed during bath times. Laughing with them as they told jokes, and pretending to still find each one funny after the tenth time they’d tell it. I dreamed of the music and movies we’d introduce them to, the recipes I would have liked to pass down, and the photographs I wanted to be sure to show them. I would have liked teaching them to cook. And I wanted to show them how to be gentle and patient with cats, with other people, and most importantly, with themselves. I imagined they also would have had a lot to teach me. I wanted the family vacations, the discussions about whether we needed a bigger car to fit everyone, the feeling of exhaustion from staying up until the wee hours on Christmas Eve to finish wrapping gifts only to have to pick up all the scattered paper the next morning. James is great at putting toys and objects together, so I imagined he would be at the ready with necessary tools and batteries. I dreamed of being strong and protective when needed, and soft and understanding too. And asking for a lot of help along the way. I pictured myself being the one to cheer them on during school plays, sporting games, debate clubs, dance recitals, science fairs, wherever their interests took them. I dreamed of spending time with our adult children, just as my brother and I enjoy doing now with our Mom. I wondered where they would have chosen to live as adults, whom they would love, and if they would have kids of their own one day. As I now watch my parents with my niece and nephew and marvel at the beautiful relationships they have, I am reminded that because we are not parents, we also won’t be grandparents. When taken all together, the weight of what I have lost feels unbearable.

Coming to the realization that I need to accept that I will not ever be a mother or a grandmother has thrown me into an ocean of grief. Through much of November and December, I alternated between sobbing and feeling numb, unable to sleep or to even gather the will to bathe some days. I am not on the other side of it; like all grief, I don’t expect I ever will be. I am just taking it a day at a time. And with the help of James, one empathetic counselor, an incredible childless-not-by-choice support network, and the remarkable book by Jody Day titled Living the Life Unexpected: How to Find Hope, Meaning, and a Fulfilling Future Without Children, not every minute of every day is consumed by the feeling of drowning. 

 

Though our circumstances for being childless may differ, the women in my CNBC support circle had similar dreams of what their own families might have been like. Many of these women are further along in their grief work than I am, but it has taken most of them several years of conscious, continuous effort to get to a place where they were able to reimagine a life for themselves that feels meaningful. My hope and belief is that, over time, I will create a Plan B for my life as well, one that does not feel like a mere participation ribbon given to the last person to finish the race.

Over the past decade, I rarely let myself entertain the thought of not becoming a mother long enough to figure out my life outside of that possibility.  It’s embarrassing to admit that as a result I put little effort into the life I am actually living. I just kept biding my time while trying to come up with ways to make my chronic illnesses less debilitating, all with the end goal of having more freedom in my life, especially when it came to parenthood. It may sound strange, but I don’t know what my life beyond “eventual mother” looks like, and in the past few months when I have tried to even consider it, I have become overwhelmed by the desire to live in a permanent state of denial.

Without this identity, I am not sure where I fit in society. As someone who is unable to work due to disabling symptoms, I already differ from most women my age and being involuntarily childless adds an additional facet. I wonder if parents realize how often group dialogue revolves around occupation and children; as someone who has neither, it’s not uncommon for me to feel like I have nothing to contribute to a conversation. Other CNBC women in my support circle have voiced that no matter how much they have personally accomplished, how many places they have traveled, or how many interests they have, if they are at an event with their female peers, the conversations always seem to come back to parenting and children. With motherhood often comes community with other mothers and a sense of purpose, and later in life, the same can be said for grandmothers. I remember once attending an event where a group of children was running and playing while several of the mothers watched from a distance. I was engaged in conversation when I happened to notice one of the children fall. A woman closer to the child swooped in to make sure he was okay. One of the mothers I was standing beside looked over and said, “oh, thank goodness for other moms helping watch over all our babies.” I am not sure if the woman who said this knew that I was not a mother, but I am certain that she did not mean to offend. However unintentional, the underlying message in statements like this is that mothers, not only have their own club, they also have a monopoly on nurturing, protecting, and caring. I do not blame mothers for simply re-stating the script that the world has been feeding us.

Society has divided women who are mothers from those who are not by continually telling us that the most valuable thing a woman can do in life is to be a parent, that there is no love on Earth equal to the love a mother has for her child, and that a mother’s thoughts and perspective have greater weight (think about how frequently you hear statements that begin with “as a mother” or read a news article in which the woman is introduced by listing the number of her offspring, “Mary, mother of four...”). Pronatalism is the practice of encouraging the bearing of children. We see pronatalist ideologies show up in religious spheres where there is a narrow view of what constitutes a family and sex is discussed solely in terms of procreation, and we also see it in governments who enact policies to support a higher birth rate. It is no wonder then that many women, like myself, have bought into the pronatalist (cough, patriarchal) idea that a woman’s primary role is that of a mother and that by giving birth a woman has fulfilled her greatest calling. Women without children are not the only ones harmed by this fetishization of motherhood; mothers, too, may struggle with whom to confide in when being a mom doesn’t always feel as extraordinary as society says it ought to. 

What comes to mind when you think of women over 40 who do not have children? I’ve had to think about my own response quite a bit, and there are two images that keep coming up. The first is that of a woman who is highly successful in her chosen career. In my mind, she not only works hard, she is usually wealthy, travels often, and has an affinity for nicer things. Occasionally, I’ll imagine that her career is that of an artist and some of the finer details shift, but there is still this undercurrent of having her work be her primary focus. The other image that comes to mind is that of a weird, grouchy, bitter woman who doesn’t care much for the company of other people. Huge contrast, right? But in speaking with other CNBC women, I realize I am not alone in resorting to these stereotypes. Throughout history, women who remain childless beyond their child-bearing years have been seen as abnormal. In the kinder of the stereotypes, the ‘career woman’ is still often viewed by society as being selfish, materialistic, cold, and uncaring. Think of the other storybook archetypes reserved for women without children – witch, hag, spinster, crazy cat lady. Motherhood is held up as the natural state of womanhood to such an extent that a woman who is not a mother is often thought of as, not only less whole, but also less trustworthy. Despite the fact that I personally know and love many brilliant, caring, generous women who do not have children and whom I would never think to categorize in any of these ways, I worry. I fear that, as someone who is disabled and childless, when society compares my life, my womanhood, and my legacy with those of a mother, I will always come up short. 

  

Our lives are marked by milestones. As children we measure time by thinking about our accomplishments, whether it is losing that first tooth, moving to the next grade in school, kissing someone for the first time, etc. When someone becomes a parent, their child’s milestones become their own – birth, toddler, school age, college, empty nest, grandchildren. Because the majority of adults are parents, this is viewed as the natural progression of life. Of course, as an individual without children, I can’t follow this blueprint, so I often feel out of step with other people my age. It’s just an added grief to know I may always feel like an “other.”

There are often only two stories that we hear – those of people who wanted children and have them, and those of people who were happy to remain childfree. We may occasionally hear personal accounts from individuals who struggled during their journey to motherhood, whether it be due to infertility, miscarriage, or the complexities of adoption, but the vast majority of the stories being told end with them having a child, a miracle baby. I love hearing stories like this, but I worry that if these are the only stories being told, we continue to reinforce the narrative that everyone who really wants to be a parent will eventually get that opportunity if they work at it harder, keep the faith, pray more, want it enough.

Today’s media would have you believe that anyone who wants a child can have one. Television is especially guilty of this – looking at you Married at First Sight – making it seem like whether a couple wants one child or wants a large family, all they have to do is have sex and bam, they can have as many as they want. Of course, it may be that easy for some people. But not all. For those whom it is not easy or, worse, not possible at all, it can feel as though we exist in the shadows.

Although childless-not-by-choice women are in the minority, we are not rare. According to the 2015 United Nations Fertility Report, on average, one adult woman in five does not have children in the Western World. While there is no concrete data that distinguishes between voluntary and involuntary childlessness, several studies have estimated that only between 6 and 10 percent of women without children actively chose to be childfree. If that’s the case, why aren’t we hearing from more people who are childless-not-by-choice? I believe it boils down to shame. 

Though all women without children lie outside of society’s norms, unlike many women who are happily childfree, CNBC women aren’t exactly speaking up to defend their childless status. Not only do we feel like we didn’t get a say in whether or not we got to be a parent, many of us feel deeply ashamed that we couldn’t make it happen – whether it be because our own body failed us or because the timing just never worked out. If my own experiences of speaking up are any indication of how things typically go for CNBC women, I believe that our shame is compounded by the fact that the people we choose to open up to rarely have been taught the skill of recognizing how profound and exquisitely painful disenfranchised grief can be, let alone how to hold space for it.

As someone who believes that we are at our best when we allow ourselves to be vulnerable, I have to admit that discussing my childlessness is an area where I struggle. Throughout my adult life I have been chronically ill to some extent; perhaps that is why no one has ever really stopped to ask me how I feel about not having children. Thankfully, writing gives me the space to think about what I want to say without worrying as much about the other person’s response - the possibility of them being distracted or not understanding. If you’re reading this and wondering what to say to someone who is childless-not-by-choice, it’s important to first recognize that although there are commonalities amongst all involuntarily childless individuals, we each have a unique set of circumstances that got us to this point and our triggers are often dependent upon where we are in our grief. Bearing this in mind, toward the end of this post I have complied a list of things you may wish to consider when engaging with a CNBC friend or family member.

I went back and forth on how to end this blog post because I really wanted to end on a positive note. But the truth is that lately when I’ve tried to sieve out the good in all of this, it’s felt forced and dishonest. I just want to get to a place where it doesn’t hurt so much when I think about my childlessness. A place where it no longer feels like a weight is on my chest when I scroll through photos of my friends’ children. A place where I don’t want to retreat into my shell when someone remarks that so and so seems to have such a perfect little family. A place where I am not so angry. Every now and then, there is the tiniest glimmer of hope that I’ll get there. A moment here and there when I am caught up in something I am doing and I briefly think, “this brings me joy.” There is a quote by Rainbow Rowell that resonates: “So, what if, instead of thinking about solving your whole life, you just think about adding additional good things. One at a time. Just let your pile of good things grow.”

  

Suggestions for supporting someone who is childless-not-by-choice:

 

• Do try to remember that families come in all sizes. We’ve been trained to have a very narrow image of the “ideal” family. Let’s change that. 
• Don’t begin or end a statement with the words “at least.”  At least you have your spouse. At least you have pets. At least you can sleep in. At least you’ll have more money. At least you have more freedom. It’s easy to want to look for a silver lining, but the problem with these statements is that they minimize our loss. We can grieve and be grateful; the two aren’t mutually exclusive. Some people believe that individuals who remain childless have the ability to do whatever they want, whenever they want. This is not true for many of us. Just as my illnesses affect me and my husband’s ability to parent, they also greatly affect our finances and limit our capacity for travel. 
• Do listen to our experiences without trying to fix us or make us feel better. You can’t fix our childlessness. We are asking for empathy, not a solution. 
• Don’t imply that if we had really wanted to be a mother, we would have tried harder or done such and such. Years ago, I had someone tell me that I must secretly want to be chronically ill, otherwise I would have found a way to get better. Statements like these are not only incredibly rude, they are bullshit; they assume that we have control over everything that happens to us. In her book, Living the Life Unexpected, Jody Day lists 50 ways for a woman who wanted to be a mother to have not become one (she has since said that she could easily add another 50). Adoption and fertility treatments are often tossed around in conversations as though a woman is not allowed to grieve if she hasn’t tried one or both, ignoring not only the time commitment and tremendous financial toll of both methods, but also that neither is guaranteed to work out. Some women are CNBC because they were not with a suitable partner during their most fertile years and they did not want to raise a child on their own. Other women struggled with their fertility and realized that IVF was not for them. Still others could not have a biological child and adoption did not appeal to them or wasn’t feasible. Some women were ambivalent about having children early in life, and it wasn’t until later on that they realized they wished they had. No matter the circumstances, we all experience the grief of being childless. 
• Do let us know that you believe us. If you are not sure what to say, that’s okay. Just acknowledging our pain and letting us know that you are sorry for our loss is perfect. 
• Don’t joke about the difficulties of parenthood. To lighten the mood and to show us that motherhood is not always a walk in the park, when we tell people we are childless-not-by-choice, we are often met with something to the effect of, “kids aren’t all they're cracked up to be” or “you can have one of mine.” Statements like these center the parent instead of empathizing with the childless individual.  Sure, when we are grieving our childlessness it can be easy to paint motherhood with rosy hues, but at the end of the day we do understand that being a parent is also messy, stressful, and exhausting much of the time. Yet, for all the ups and downs of parenthood, the vast majority of parents agree that their children are worth it. 
• Do try to understand that, no matter how chaotic your life may be at times, if you are a parent or someone who has chosen to be childfree, you are privileged to have been able to make that decision for yourself. 
• Don’t resort to catchphrases like “everything happens for a reason” or “God must have a different plan.” My hope is that you wouldn’t say this to a bereaved mother or father. Please don’t say it to us either. 
• Do remind us how important we are to you and your family. One of the hardest things about this particular type of grief is how it makes us question our worth. Just like anyone else, we benefit from hearing that our life matters and that our presence is still wanted at get-togethers. Understand that we may not always feel up to attending, but it means a lot to be included.  
• Don’t try to comfort us by telling us that being aunts, godmothers, friends to your children, or having pets is akin to being a mother. Unless we are actually the person raising the child, it is not the same. I love my niece and nephew more than I thought possible, but comparing my relationship with them to the relationship they each have with their mother would be disingenuous. My cat Tiger and I have an incredibly close bond, but it's a bit insulting to have it assumed that, as a woman without children, I do not understand that there is a difference between what a mother feels for her child and what I feel for my “fur baby.” 
• Do remember that grief isn’t linear, and that we may not always feel up to discussing it. As with any other form of grief, we sometimes think we have made progress towards acceptance, only to be swept under a strong current once again. I do my best to hold it together when I am with friends and family. In my conversations with other CNBC women, it is pretty common for most of us to hide our pain when we are around other people. Please don’t be hurt if, even on our hardest days, we choose not to break down in front of you. 
• Don’t mention that multiple individuals are expecting or have recently had a baby. If possible, ask your CNBC friend how she would like to be notified of a pregnancy. This one is tough. On the one hand it is nice to be kept in the loop, but it can be very difficult to hear that everyone around you is getting what you wanted while you are in the throes of grief. Every CNBC woman has a different tolerance level for these types of conversations depending upon where she is at in dealing with her own loss. I know some who cry at any mention of pregnancy or parenting. For me personally, the discussion of multiple pregnancies or families with young children is especially difficult. 
• Do know that any effort you make to understand and empathize with our experience is appreciated. Seriously.

 

Resources for those who want to learn more:

Podcast episodes:

•  Hilary Fennell interviews several CNBC women in this radio documentary. Search “Documentary on Newstalk” episode: ‘Childless’ on Apple or Spotify

•  The Full Stop Podcast is a CNBC community podcast hosted by Michael Hughes, Sarah Lawrence, and Berenice Smith https://www.thefullstoppod.com/

Websites, videos, and blogs:

• Walk In Our Shoes combines anonymous storytelling and photographs to spread awareness of involuntary childlessness https://walkinourshoes.net/stories

• Vickie and Michael Hughes blog about their experiences as a CNBC couple https://www.marriedandchildless.com/ Michael also hosts a private support group for CNBC men on Facebook called The Clan of Brothers.

• The Clan of Brothers discuss legacy. This is an incredibly vulnerable, brave discussion amongst men from different parts of the world. I recommend it to anyone wanting to learn more about what is like to be a childless-not-by-choice man.  https://www.youtube.com/watch?v=JSXkuCyH9yQ&t=32s

• Jody Day has been nicknamed the Beyoncé of Childless Women because of how instrumental she has been in spreading awareness and creating a safe community. Watch her TEDx talk here. The lost tribe of childless women | Jody Day | TEDxHull https://www.youtube.com/watch?v=uufXWTHT60Y&t=8s

• Gateway Women is a global friendship and support network for childless women, founded by Jody Day. https://gateway-women.com/

Books:

• Day, Jody (2nd Edition: 19 March 2020) Living the Life Unexpected: How to Find Hope, Meaning, and a Fulfilling Future Without Children. UK: Bluebird/PanMacmillan.

References:

Day, Jody. (2nd Edition: 19 March 2020) Living the Life Unexpected: How to Find Hope, Meaning, and a Fulfilling Future Without Children. UK: Bluebird/PanMacmillan.

Keizer, R. (2014) ‘Childlessness.’ In: Micholas A.C. (Ed.). Encyclopedia of Quality of Life and Well-Being Research. Netherlands, Dordrecht: Springer. Pp. 775-781.

Martinez, G., Daniels, K., and Chandra, A. (2012). 'Fertility of men and women aged 15-44 years in the United States: National Survey of Family Growth, 2006-2010.' Natl Health Stat Report. 2012 Apr 12; (51): 1-28.

United Nations, Department of Economic and Social Affairs: Population Division. 'World Fertility Report 2015'. United Nations: New York, 2017. p.xiii.

 

When My Illness Causes a Scene

The scene was familiar. I had just finished eating a lovely steak dinner with my family when I began to feel the heaviness in my abdomen. The dimly-lit restaurant was fairly busy on this particular Friday night, and there was a constant buzz in the air with waiters zipping past and couples carrying on their own conversations at the adjacent tables. My family must have seen it coming on because I noticed them hurriedly flagging down the waiter for the check. My husband and parents have become experts at catching these symptoms in their earliest phases, as if always on alert for the warning signs.

If you are looking closely, you will notice that it often begins with a glassy look to my eyes, sometimes a tear or two will fall from my right eye. My smile begins to look a little crooked, and I have a harder time answering questions. My responses become short, and I resort to nods and shakes of my head. I try smiling to let everyone know that I am okay, despite all evidence to the contrary. Often within a matter of minutes, my speech becomes child-like. The right side of my face droops, and my hands curl up into half fists. Sometimes there is an impulse to hit my face with these cupped hands. I have been known to say that it feels like there are bugs crawling all over my skin and the need to brush them off is uncontrollable. Other times, the hitting is not directed at myself but at an object in front of me - a wall, a paper towel holder, or my wheelchair. If I am holding a book or magazine, I will violently begin flipping the pages, accidentally tearing them as I go. A phone or tablet is subjected to rapid scrolling and tapping without an actual glance at the screen below. Sometimes my husband will take my jerking hands into his own and hold them; all the while, I fight against him.

This is how my migraines with aura in the brainstem typically present themselves. They are not the quiet, icepick through the skull migraines, though that pain occasionally comes later. These bad boys come on with a bang. I like to think that they want everyone to know they have arrived. 

This particular evening, we did not have my wheelchair in the car. The restaurant itself, with gravel leading up to the door, was not handicap-accessible, so it likely would not have mattered. We had to somehow move my quickly-fading self from our table to the front door and then to the car. We’ve adopted a phrase in my family for times like this: strong arms. When my family says that it is time for strong arms, they mean that it is time to move me from one location to another and during this process they may literally need all their strength. With my dad’s arms interlocking my left arm and my husband doing the same on the right, we made our way to the lobby. I was just barely aware of my surroundings at this point. As is often the case during these episodes, my vision blurred and I faded in and out of consciousness. For years, it was difficult to distinguish these migraines episodes from the presyncopal and syncopal events I experience as a result of dysautonomia. Both manifest themselves similarly and both result in a hangover-like effect for hours, sometimes days, afterward. My neurologist tells me that this type of migraine is directly related to the malfunctioning of my autonomic nervous system, so whether I call it dysautonomia or a migraine is sort of irrelevant. It reminds me a bit of the chicken and the egg debate. 

There is always the hope that I can make it to the final destination, in this case the car, without collapsing. But on this occasion, I made it as far as the lobby before my legs gave way, despite my companions’ best efforts to keep me upright. I always wonder what these episodes must look like to outsiders. What do the other patrons who are waiting at the hostess stand think of this display? I must appear to have not only physical limitations, but mental limitations as well, since I am often drooling and my verbal communication is impaired. It probably isn’t every day that you see someone collapse to the floor at a restaurant or the grocery store, and it yet it feels kind of normal for me. On a separate but similarly terrible occasion, we dined at a local pizza place and my husband later told me that one of the waitresses asked if I was drunk. I remember this comment really bothering me at the time. Over the years, I’ve come to feel less and less embarrassed by these episodes and to see them instead for what they are – manifestations of an illness that is completely out of my control. Don’t get me wrong, it still feels uncomfortable to be so exposed and vulnerable in these moments, but it’s getting easier. Occasionally, I am so far gone that I am completely unaware of onlookers altogether. And as silly as it sounds, while those episodes are probably the hardest on my body, they are the easiest on me emotionally. 

After sitting for a few minutes on a bench in the lobby, we attempted to make our way to the car. Unfortunately, I collapsed again on the gravel. I vaguely recall my worried parents standing over me as I fought to regain normalcy. My breathing felt labored and I began to hyperventilate. Hyperventilating during these episodes is not uncommon for me. It is as though there is such a build-up of pain and frustration with my body that I just can’t seem to come to grips with the total lack of control I have in that moment, and I panic. 

I don’t remember what happened next, but if history is any indication, my family likely struggled getting me into my house and into bed. My husband probably helped me out of my clothes and shoes, put my pajamas on me, and gave me something to help me sleep. By this point, my head would be throbbing, but I would also be so worn out that, despite the pain, I could likely drift off.

I wish I could say that this night was a one-off, but I can’t count the number of episodes I have had that are just like this. Gratefully, this past year has been better and the migraines, while not gone completely, have been fewer and further between. I credit this to medication changes and to simply learning to listen to my body when it is telling me to rest. 

My mom has told me stories of strangers coming to her aid when I have had such moments in the grocery store. And I can recall a few times where restaurant staff would go out of their way to help me and my family when they saw us struggling. Most individuals though just sort of stare. I don’t think it’s that they are nosy, I think they just don’t how to be of assistance in that situation. And I get that. Because of my experience with this, I’d like to think that nowadays if I were to witness a similar situation, I would reach out to the frazzled family member and just ask if there was anything I could do to help.