Having the Language to Describe Grief Related to Infertility and Miscarriage

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Having the Language to Describe Grief Related to Infertility and Miscarriage

By Jena Booher


Jena Booher is on a mission: to end the motherhood penalty in the United States. After excelling in a career on Wall Street for nearly a decade, Jena was met with a rude awakening when she became pregnant: “I realized I had bought into a myth of meritocracy my whole life: as long as I worked hard and outperformed my peers, I would experience success. This proved to be true until I became a mother,” she says. Confronted with the unconscious bias that dominates most of corporate America, Jena left the world of finance to earn her masters in mental health counseling. She then founded Babies on the Brain, a consulting agency that uses the latest research in psychology to advise companies on how to create and retain diverse teams (full of mothers). Furthering her expertise, Jena is currently pursuing a PhD in psychology.

Read on for her helpful, albeit controversial, guide to grief surrounding infertility and miscarriage.

The population I most enjoy working with in my private practice are women struggling with infertility and miscarriage, i.e. those experiencing disenfranchised grief. It’s a term not commonly known, especially to those outside of the mental health community but it’s likely you or someone you know has experienced it.

Disenfranchised grief is a type of pain that is precipitated by a loss that is not socially sanctioned, openly acknowledged, or publically mourned (Pillai-Friedman & Ashline, 2014). Examples of disenfranchised grief include pregnancy loss, abortion grieving, sexual assault, death of a pet, loss of a job, sexually transmitted diseases, the breakup or loss of a secret relationship, and many other things. I call it the “gray area.”  It’s not black or white, but it’s no less painful than any other kind of grieving. 

One of the main issues for anyone experiencing disenfranchised grief is there is no societal ritual for mourning. As a result, the person experiencing the loss often feels alone and has no public space to share and heal from their grief. Other feelings associated with disenfranchised grief include dominant feelings of shock, intense upset, and self-blame (Mulvihill & Walsh, 2014). 

In other posts of mine I have talked about the lack of ritualizing for miscarriage and infertility and how that leads to further isolation.  It’s a real thing.  When someone miscarries, what do you do as a friend?  Do you send a card?  Send flowers?  What’s the right thing to do?  There is no clear-cut answer. 

To understand disenfranchised grief in the context of miscarriage and infertility, it is important to also understand what kind of loss the client is experiencing.  One researcher who has looked at this specific type of grief describes it as an uncanny loss, confusing and incomprehensible… inherently open-ended and defies closure (Boss & Carnes, 2012). This type of loss is very different than other forms of loss such as bereavement of a spouse, where there is closure or rituals for mourning.

One way for women experiencing this specific kind of grief to heal is to find meaning and to also learn to tolerate the uncertainty since traditional forms of closure may not happen.  Infertility and miscarriage is often described by my clients as a perpetual hellish limbo.  Oftentimes there is no defined “end” to their infertility journey until menopause, which oftentimes is a long way away.  That “end” also doesn’t result in a baby.  It just simply signifies the end of their fertility journey because they are no longer able to ovulate. 

Because of this uncertainty and the need to tolerate it, for any client of mine experiencing infertility I recommend evaluating their current behaviors.  Oftentimes in any emotional distress there are actions a person takes that actually can perpetuate the grief, instead of improving it. I see this often with women who struggle with infertility and miscarriage who constantly check social media such as Instagram and Facebook and look at pictures of friend’s and family’s children and self-compare. This type of behavior only fuels the pain. It doesn’t serve them.  As a result, the client’s role especially when it comes to disenfranchised grief or ambiguous loss is to change these behaviors as best as they can.

One of the main types of therapies that I find work best for women struggling with this type of grief is trauma informed therapy like EMDR or trauma informed cognitive behavioral therapy.  Often my clients don’t remember every detail of their miscarriage. It’s as if their thinking brain went offline and their amygdala was in full effect as they were hemorrhaging blood.

Also for women who have gone through extensive fertility treatment, they don’t always remember every procedure, every prick and prod. They have attempted to block all of that out.  This is totally understandable and is the brain’s way of protecting itself. 

It’s devastating when a woman starts associating extremely negative thoughts and beliefs with bringing a child into this world, but it’s something I see all the time. And who can blame that kind of thinking after several failed attempts to carry a child to term? 

Boundary setting is crucial.  Oftentimes I see family members and friends of those experiencing infertility and miscarriage make less than supportive comments.  Comments are almost exclusively made without malicious intent, but for the woman on the other side it can feel like a finger in the wound. 

Boundary setting may mean an emotional distancing from family and friends.  This potentially includes not spending holidays with parents, siblings, friends out of protection for the women’s emotional state.  If I could say anything to the family members on the other side of this painful process I would tell them that your daughters, sisters, girlfriends don’t desire to shut down or withdraw from you.  They still love you.  However it isn’t about you anymore.  It’s about them and please, please try to understand.  If you can’t understand, then please respect whatever decisions they may need to make. 

Our Take

  • That gnawing, horrible pain we feel when something terrible happens, but it's not kosher to talk about, that's disenfranchised grief. Honestly, people know how to react when your dog dies, but when you've had your seventh round of failed IVF, the world doesn't know what to think. So you feel that pain, but there is no societal mourning ritual to accompany it, so the pain lingers longer and maybe even harder than other "socially accepted" kinds of grief. 
  • Make it easier on yourself by ditching your social media feeds (enough with the perfect pregnancies already) and get cool with the uncertainty of it all (much easier said than done).
  • Journaling is an effective way to see what you've learned from the experience. If you can extract meaning from the ordeal, it helps you move on.
  • Take a beat for yourself and set some boundaries with loved ones. Remember when Charlotte told Miranda she couldn't make it to Brady's birthday after her miscarriage? Yes, an Elizabeth Taylor Lifetime movie made her change her mind, but it's good to say what you need. Even though they love you, your friends and family don't know how to deal with your pain either. 
  • Do it like the Queen: Beyoncé found the disenfranchised grief after her miscarriage unbearable as well so she soothed herself by writing a song: “I went into the studio and wrote the saddest song I’ve ever written in my life ... And it was the best form of therapy for me, because it was the saddest thing I’ve ever been through,” she told Oprah.  It's time we all watched Lemonade again. 

Photo: courtesy of TIDAL

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