Category Archives: Disenfranchised Grief

Becoming and Being Seen

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Bishop Tree for Blog

Richard Easterling, 2018

“A miscarriage is lonely, painful, and demoralising almost on a cellular level.” Michelle Obama, Becoming

The remarkable and accomplished former first lady’s candid statements about her personal loss are welcomed by many of us who have had the common, and often emotionally devastating, experience of miscarriage.  By including this part of her life in her new book, Ms. Obama has helped to continue to push open the door to this national discussion about how we are affected by perinatal loss and what can help.

In an attempt to add a bit to this conversation, I’m attaching the following excerpt from my book At a Loss:  Living and Growing After Miscarriage, Stillbirth and Infant Death.  I think the technical term for my book at this moment might actually be manuscript, but it is complete and I’m working to find the right publisher.  I’d like to also take this opportunity to extend a big thanks to everyone for your support of this project– your words and faith in the book have meant a lot to me.

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Chapter 4: Feeling Unseen

I don’t need a cloak to become invisible.
—J. K. Rowling, Harry Potter and the Sorcerer’s Stone

“We had a family gathering, and no one mentioned the baby.”

“It’s been weeks since anyone checked in with me to see how I’m doing.”

“I told my friend I was having a hard day, and she said she couldn’t understand why I was still so upset.”

When I was in my early twenties, one of my best friends lost her second child. She was at full term with a baby boy and found out just before delivery that he had passed away. I had recently moved from the Midwest to California and learned all of this from a distance. As the details came in, I was sad, horrified, and uncomfortably helpless. I was also, unfortunately, too naïve to really understand or empathize.

As a young, single woman who had no experience with pregnancy or parenting, I could only try to imagine what my friend was going through. It seemed surreal, like something that would happen to people I didn’t know. My heart ached for her, and I repeatedly made brief, awkward attempts to express my sympathy over the phone.

As I heard that my friend had named her son, visited his grave daily, and spent much of her day crying, I felt sympathetic—and then, within weeks, a bit uncomfortable and even judgmental. When the weeks turned into months, I continued to reach out with periodic, strained attempts at conversation, while my internal judgments grew louder. It seemed strange to me that she would grieve so intensely for someone who (I believed) had never truly been in the world. She didn’t really know him, right? She already had one living child and certainly could expect to have more. Could she be making too much of her loss? Was she somehow making it worse? Might she be committing the crime (as we Midwesterners tend to see it) of being raw and open about intense feelings?

Kenneth Doka coined the phrase “disenfranchised grief” to refer to the pain of certain types of losses that are commonly unrecognized or minimized by society. These include losses that society views negatively, such as loss of a loved one through suicide, and those that are somehow hidden, such as a miscarriage.

Another type of perinatal loss that happens to some of us are terminations due to a prenatal diagnosis, such as a chromosomal abnormality that is incompatible with life or seriously threatens the quality of life. These losses are often experienced as a disenfranchised grief. Abortion—even when it may not feel like a choice—is a loss that many in our circle may view negatively. It may lead those of us in this situation to not even tell friends or family about our pregnancy or how and why it ended.

Support from family, friends, and even strangers is one of the ways we humans get through grief. When you have to grieve without these expressions of care and concern, you may feel the added burden of isolation on top of the loss. If other people don’t validate your strong feelings, you may feel ashamed of them. You are, in a sense, grieving without permission and without the recognition that your loss warrants a full experience of mourning.

Sometimes the expression of care isn’t missing; it’s inauthentic or inept. This, too, can add to your pain and suffering. To my knowledge, no one has ever felt helped by hearing (or sensing from their friend’s unspoken communication) that she is overreacting to the loss of her baby. Grief is not a disease, it’s not a choice, and it’s certainly not something we can be talked out of.

In those moments when people just aren’t there for you, or when they minimize your pain, it can help to know that it may be because they just don’t understand your grief experience.  It can also help to know that awareness of baby loss is growing and that whether or not you have met them yet, there are people on your planet who understand why you are feeling the way you are feeling.

Your loss is understandably devastating, and it may be taking up much of your energy. You are having your own experience of grief, and you don’t have to spend extra energy worrying that you are doing it right in the eyes of others. As Joanne Cacciatore writes in Bearing the Unbearable, “…if grief is a disease, so too must be love.”

The Shaking Tree

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??????????????????????????????????????????????????????????????????????????????????????????????????????????“Family isn’t something that’s supposed to be static, or set. People marry in, divorce out. They’re born, they die. It’s always evolving, turning into something else.”  Sarah Dessen, Lock and Key

“You can kiss your family and friends good-bye and put miles between you, but at the same time you carry them with you in your heart, your mind, your stomach, because you do not just live in a world but a world lives in you.”  Frederick Buechner

Pregnancy’s ineluctably relational nature means that once it begins, it can never be completely negated…  In any case, in any outcome, there is a relationship the woman has to do something with–  mourn it, celebrate it, try to forget it, dismiss it, accept its loss.  Daphne de Marneffe, Maternal Desire:  On Children Love and the Inner Life

Family trees are overrated.  That’s my opinion about the traditional ones anyway–  the kind that kids are asked to do in school and the ones touted on ancestry websites.   I get that they can be useful for teaching us something about where we come from and some of the characters in our family history.  I understand that the information may be rather poignant or interesting (e.g. my first relative to enter this country was a stowaway on a ship– I love to travel on the cheap– any meaningful connection there?).  But when the background of our clan is drawn up in terms of births, deaths, marriage and divorce only, it seems to me to be a skeleton– with some bones missing– view of a family.  There’s just a whole lot that remains unseen.

Maybe you were raised by your Aunt Fanny or your grandparents.  Maybe your parents forgot to get married or divorced.  Or maybe your parents couldn’t get married or you were conceived with the help of what psychologist Dianne Ehrensaft terms a “birth other” (donor or surrogate) or have more or less than two parents who are raised you.  The authorities who track the comings and goings of our lives are likely to miss such details.  The lines running between our hearts and those we love may be very different than what shows up on a traditional family tree.

Historically and today, a baby loss may not be noted in a family record.  Depending on whether the loss was during or after pregnancy, whether a birth or death certificate was made and who all was told, it may be an off the books experience.  The fact that it may go undeclared and unwritten matches the ambiguous quality that can be a part of baby loss.

Not every pregnancy loss is seen as a loss of a person and it doesn’t need to be.  We each have an individual understanding of our loss and may hold it as more of a loss of a dream or a version of one’s future.  Even infant loss, depending on cultural and individual differences, may be viewed as something less than would the loss of another family member.

But even when the occurrence is documented minimally or not at all, a baby loss still shakes the family tree.

Perinatal loss is often felt as a family crisis at multiple levels.  When a baby is expected or recently arrived, new tendrils of feelings come out of family members.   The feelings may be simply love or something more complicated, but a course is charted for a relationship and its accompanying emotions.

When a baby dies, everything changes.  After excitement, planning and attachment, there is a space.  There may be very traumatic memories and almost certainly very sad ones.  There is hurt and shadow hanging over at least some of the family members.  There may be a name that will rarely be said, family pictures that will have someone missing and ongoing relationships that will not develop.

All the hopes and dreams of one part of the family story are altered.  The identities of mother, grandmother, uncle, etc are questioned or shifted as family members consider how a place will or will not be held for the baby in the family history.  The ambiguity of a relationship starting and not continuing in a tangible manner may lead people to minimize the experience, but that won’t make it a non-event.  The loss to the family at large of a baby may be a confusing experience to articulate, but that doesn’t diminish the reverberations.

One consequence of a baby loss might be the test of our family member’s emotional responses in time of crisis.  We often have years or decades between big moments of birth and death, coming and going, beginnings and endings in a family.  Baby loss may trigger a sense of fast forwarding through these types of experiences.  We attach and change, grieve and stumble, show up for each other or don’t.

As with any loss in the family, we also run the experiment of testing out whether our mourning can be done while we stay connected to life and to each other.  We find out if we can be open to joy again as we still grieve.  Expecting and losing a baby makes us trot our heart quickly through its paces of the highs and lows of love.

At the end of it all, as the old bumper sticker tells us, love is what makes a family.  All of this family drama may include family of various descriptions.  The VIP list in your heart and star placement on your family tree can always include a list of less than traditional players.  It could include the teacher who changed your life, your AA sponsor or your best friend.

Your family tree may also proudly feature someone you never met.  It may include someone who changed you both physically and emotionally and taught you about attachment, priorities and loss.  It may be the person whose presence made you both a mother and a bereaved person.  It may be someone you never held, but who you will always hold close.

 

Leaning

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“I think about calling a friend sometimes, but I’m not sure anyone wants to spend time with me right now.”

“My coworkers look nervous when they ask me how I’m doing.”

“My family was really supportive at the beginning, but now they don’t even mention the baby and what happened.”

Humans are social creatures.  We need each other.  We mingle in all kinds of family and work groups and have developed complex interdependent systems to take care of each other when it comes to food, healthcare, entertainment, safety and emotional well-being.  Just to get through a routine day, we usually require quite a bit of assistance from other people.  We need them to drive the bus to work, sell us coffee and go for a walk with us at lunchtime to discuss the new Star Wars film.  We depend on family, friends and professionals to help us stay upright and healthy in the world.

During pregnancy, and in anticipation of birth and the early time with a baby, we generally receive an even higher than normal amount of practical and emotional help from others.  This often means more contact and attention from loved ones as well as the healthcare system of doctors, midwives, doulas, etc.  People often meet us with high energy and open hearts during the exciting time of transitioning to becoming parents or extending a family.

When something goes wrong, however, the team of friends, family and professionals that was very well prepared for a living baby may not be as up to the task of coping with a loss.  People may be awkward, show up at first and then back away pretty quickly or they may have trouble offering anything at all.

There are probably lots of reasons for this.  We don’t expect the early end of a pregnancy or death of a baby and each person struggles with his or her own reactions to such events.  We also live in a society that tends to minimize grief in general and baby loss in particular.  There is discomfort and confusion about the significance of losing someone who was not really well known to the world.  Those who were eager to help with a new life may not be ready to help with pain and emptiness.  This can be challenging on both sides, meaning that it can be tough to both give and receive support after baby loss.

Challenges Related to Providing Support

Because of anxiety, mistaken assumptions or just feeling at a loss, it can be hard for those in a position to help after loss to do so effectively.  Family and friends might wait for cues that they either don’t see or misread.  Medical providers may also feel challenged in this situation.  They are not always comfortable with the shift in focus from more routine pregnancy and baby care to the raw feelings and needs displayed by someone experiencing perinatal bereavement.

The discomfort from members of the potential support system is often relayed through unclear or unhelpful communication.  “Let me know if you need anything” can feel like a pretty vague statement to someone.   If  “I should wait for her to bring it up” is used as a strategy, it may translate to a grieving person as indifference.

Euphemisms can also be less than helpful during this time.  Euphemisms hide or distort direct meaning and in some situations can make information softer or easier to hear while still conveying something useful.  When we read a sign that says “please do not throw feminine products in the toilet”, we understand the underlying message and that it’s not a concern about our pitching lipstick or Adele CDs into the loo.  But when, after a heartbreaking loss, people speak to us about “letting go”,  “moving on” or “closure”,  what does that really mean?  Implying that there will be an end to feelings about the permanent loss of a loved one can be confusing and painful to someone in the throes of grief.  It might just make a person feel misunderstood or alone.

Challenges Related to Receiving Support

As far as making the effort to reach out for help or accepting support, that can be tough too.   Most of us are horrified by the thought of being the neon lit person of the recent tragedy.  It’s tough to be that person in the social circle, even as a temporary identity.  It’s one of the many things you probably wish wasn’t happening right now.

Since the emotional and physical ramifications of baby loss are not often discussed, you  may not feel socially entitled to being seen and treated as a bereaved person.  People in your situation often have trouble letting others know their feelings or needs.  Sometimes, as often happens with a miscarriage or termination due to a devastating medical diagnosis, they may not even let others know that it happened.

Increasing Your Support

Losing a baby means losing someone dear to you, often in an unexpected and traumatic manner.  When this happens to you, it’s a high needs time.  Maybe you want to talk and maybe you don’t, but you need something.  Maybe it’s someone to help you deal with your insurance paperwork, walk your dog, take you to your appointments, bring you groceries or sit with you in silence.  Maybe you don’t know what you need, but that doesn’t make you less needy.  You’re hurting and it’s your time to lean on others a bit.

If someone is offering help, take him or her up on it.  If it seems extra hard, start with something very small.  If someone has to be told that you need them, consider doing so.  Sometimes people appreciate the information and can step up when prompted.  Many people are anxious and uncertain about how to be helpful or if their help is even welcome.  Letting them know what you need may make them feel more comfortable as you’ve given them the option of directing their energy in a useful manner.

When your medical providers are not able to give you what you need at this time, consider giving them feedback and/or switching to someone else for your care.  At a time when so much is out of your control, remember that you still have choices in this area.  Because it can be so hard to process information at this time, and the information you have may be incomplete, you may also want more than one medical professional to help you understand what happened and what it may mean for your future.

If a friend or family in your support system is awkward or insensitive in their help-giving, consider trying to forgive them.  Take a break from them if you need to, and try not to make any long term assumptions about the relationship.  None of you are in the best place right now.

Maybe you will want to break ties or change your relationships with someone based on their current behavior, but it may be helpful to wait before assuming estrangement with a friend or family member.  I recently found out that a decades long rift between two now deceased members of my family was caused by “something to do with pork chops”.  It’s hard for me to believe that this fight and the feelings of upset needed to result in the extended separation and tension in the family.  Although it can be very hard to forgive emotional injuries, whatever the cause, it may be worth it because it may help you feel better and more peaceful in the long run.

Ask those who are closest to you and who are the most competent to engage others further out in your support network.  If no one is local, try using the phone or internet.  If you really can’t find someone to help you in the moment, remind yourself that you deserve it anyway and keep looking.  As Les Brown said, “Ask for help, not because you’re weak, but because you want to remain strong.”

 

 

 

Unauthorized Grief

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When I was in my early 20’s, one of my best friends lost her second child.  She was full term with a baby boy and found out just before delivery that he had passed away.  I had recently moved from the Midwest to California and learned all of this from a distance.  As the details came in, I was sad, horrified, and uncomfortably helpless.  I was also, unfortunately, full of judgments.

As a young, single woman who had no experience with pregnancy or parenting, I could only try to imagine what she had been through.  It seemed surreal, like something that happened to people I wouldn’t know.  My heart ached for her and I repeatedly made brief, awkward statements over the phone to express my sympathy.

As I heard that my friend had named her son, visited his grave daily, and spent much of her day crying, I felt sympathetic and then, within weeks, a bit uncomfortable.  When the weeks turned into months, I continued my brief, awkward statements while my internal judgments got louder. It seemed strange to me that she would grieve so intensely for someone (as I judged) who was never really in the world.  She didn’t really know him, right?  She already had one living child and certainly could expect to have more.  Could she be making too much of her loss?  Was she somehow making it worse?  Might she be committing the crime (as we Midwesterners tend to see it) of being raw and open about intense feelings?

Kenneth Doka coined the phrase “disenfranchised grief” to refer to certain types of grief  that are commonly unrecognized or minimized by society (Disenfranchised Grief:  A Hidden Sorrow, 1989).  Examples include those losses that society views negatively, such as loss of a loved one through suicide, and those that are somehow hidden, such as a miscarriage or other losses during pregnancy.

People grieving these types of losses without societal support can feel the added burden of isolation in their grief, and possibly shame related to their strong feelings in the absence of validation.  They are, in a sense, grieving without permission and without social acceptance that their loss warrants a full experience of mourning.

A disenfranchised grief experience may be especially challenging for the bereaved.   If support to those grieving a perinatal loss is lacking or inauthentic, it may add to their pain and suffering. To my knowledge, no one has ever felt helped by hearing (or sensing from their friend’s unspoken communication) that she is overreacting to the loss of her baby.  Grief is not a choice and therefore not something one can be talked out of.

It may help you to know that your grief experience may not be well understood by others and that lack of understanding can lead to unhelpful responses, including minimizing your pain.  It may also be important for you to know that societal and cultural awareness of perinatal loss is growing and that whether or not you have met them yet, there are people on your planet who understand you.  If you don’t see them immediately, look for books, websites, blogs or support groups.  Your loss is understandably devastating, and it may be taking up much of your energy.  You are having your own experience of grief, and you don’t have to spend extra energy worrying that you are doing it right in the eyes of others.