Disenfranchised Grief: A Q&A with Alex Zappala

The experience of grief transcends different types of losses. While we may all be familiar with its stages of grief, one element of grief that often goes unnoticed is called Disenfranchised Grief.

Recently, I had the opportunity to speak with Alex Zappala, a writer and therapist from the loss community called Grief Uncovered™, about how disenfranchised grief impacts those struggling with pregnancy loss and infertility.

To read more from our Q&A, please see below:

Can you explain the concept of disenfranchised grief, for those who are unfamiliar with it or who may have experienced it but never gave it a name?

Disenfranchised grief – a term first coined by Dr. Kenneth Doka – occurs when a person’s mourning process is not fully supported or recognized by their larger community or society and becomes devalued. 

Doka (2002) has identified five ways we may see disenfranchised grief:

1. The loss isn’t seen as worthy of grief (ex. non-death losses)

2. The relationship is stigmatized (ex. partner in an extramarital affair)

3. The mechanism of death is stigmatized (ex. suicide or overdose death, pregnancy loss, pregnancy termination for medical reasons or otherwise)

4. The person grieving is not recognized as a griever (ex. co-workers or ex-partners, parents whose children are no longer here)

5. The way someone is grieving is stigmatized. (ex. the absence of an outward grief response or extreme grief responses).

How have you seen disenfranchised grief show up in the lives of the women you work with?

Disenfranchised grief shows up in my community when women, men, and couples feel less entitled to honor their losses because of how it occurred or from a particular circumstance like pregnancy loss (miscarriage), pregnancy termination for a medical reason (TFMR), and infertility. 

  • While pregnancy loss (miscarriage) is often misunderstood, it is still the loss of a pregnancy and triggers feelings associated with grieving like anger, sadness, and loneliness.
  • Even though research tells us that early losses (at five and six weeks) has a profound effect on a person and register as a loss, some may feel less “entitled” to grieve because they never “knew their baby” or “could not have bonded so quickly.” For women and couples who have experienced losses, there appears to be an unspoken rule about an “entitlement” to grief that depends on how far along they were in their pregnancies.
  • Regardless, pregnancy loss at any stage is painful, and feelings of grief are normal. Minimizing the impact of the loss due to the length of pregnancy or the perceived ability to bond with one’s baby exacerbates the pain that already exists.  
  • Ending a pregnancy is a delicate topic in general. Because of this sensitivity, women and couples within the pregnancy loss community may experience disenfranchised grief when faced with ending a pregnancy for medical reasons. These reasons include a fetal diagnosis with chromosomal or genetic conditions that result in a poor prognosis or an incompatibility with life or a risk to the mother’s health. While the parents of these babies have made heartbreaking choices out of concern for the baby’s (or their) health, they may not feel open to discussing their losses, especially if they fear judgment from loved ones who have strong opinions about their medical decision.  
  • Struggling with infertility is akin to a perpetual grieving process. Constant grieving over the loss of achieving a family the way you imagined, exacerbated by the grief associated with failed fertility treatments month after month, takes its toll. 

What impact does it appear to have on these women, their grieving processes, and their lives as a whole?

The impact of disenfranchised grief on women is multi-layered. 

Women, men, and couples struggle with pregnancy/child loss/infertility experience grief for the reasons described above. They may also question themselves, their sense of womanhood as a result of these losses. Or, they may even mention feeling like their bodies are “broken” or “damaged” because they are unable to carry a child. 

With so much of the world oriented toward parenthood, redefining a sense of identity outside of grief as it relates to parenthood takes time, extreme care, and patience.

What sorts of recommendations for coping strategies do you tend to share with your clients when they are encountering this?

  1. Acknowledge your pain. It matters.
  2. Accept that grief can trigger many different and unexpected emotions. Also, accept that grief can be triggered by many different and unexpected emotions. Don’t judge what comes up.
  3. Understand that your grieving process will be unique to you. I always say, “Your grief, your process!”
  4. Seek help where you feel supported and valued.
  5. Support yourself emotionally by taking care of yourself physically by eating properly, getting enough sleep, and exercising.

What do you think is needed in order for us to de-stigmatize and validate pregnancy loss? Whether in the field or not, how can we all do our part?

One in four women experiences a pregnancy loss (miscarriage), and 1 in 8 couples struggle with fertility issues. 

Social media is a powerful medium that is being used to promote awareness of many important issues, of which disenfranchised grief is one. The more we discuss the not-so-obvious ways that grief shows up for people, the more we increase awareness and de-stigmatize loss and grief.

Alex Zappala is a Counseling Psychology EdM candidate and writer with a personal commitment to demystifying and normalizing grief. You can follow her on Instagram: @griefuncovered.

Our Q&A was originally published on April 26, 2020. You can find it here.

Related articles: Regrouping During Uncertain Times

A Therapist’s Journey Through Pregnancy Loss

Unexpected memories can take you back to the happiest and saddest times in your life. Not too long ago, I was scrolling through my Facebook feed and came across an old photo from a college reunion I’d attended. 

There I was, basking in the joy of people I hadn’t seen in 20 years, holding a classmate’s infant in my arms. 

I quickly remembered feeling a twinge in my belly that made me pause. I’d suffered a miscarriage at 9 weeks the year before, and that little bundle of joy I was holding was bringing me face-to-face with something I’d been too afraid to see. 

Although I still felt hopeful, when it came to having my own child…I was still guarded

One Step Closer to Motherhood

After returning home from that reunion, I soon found out that I was pregnant again. I was thrilled and hopeful. But I also felt the intense anxiety of being pregnant after having had a miscarriage. 

Each week was a new milestone. It was one week closer to being out of the “danger zone” (the first trimester when miscarriages are most likely to occur) and one step closer to my dream of being a mother. 

It didn’t help that pregnancy symptoms can often mimic the signs of miscarriage. But I was comforted by the fact that, even though I was spotting, my constant nausea and all-day sickness meant my hormones were working. 

My baby was growing.

Just as I approached the end of my first trimester and began to celebrate, my excitement turned into unimaginable despair. 

My blood test and ultrasound confirmed our worst fears: Our son was sick. 

The Unimaginable Grief of Pregnancy Loss

On October 13, 2014, we said goodbye to our son at 15 1/2 weeks. He would have been four and a half years old today. 

My husband and I were forced to face unimaginable grief. We were walking through life in a daze as we tried to move forward. 

No one wants to be part of the “Pregnancy Loss Club”, and it’s a membership I didn’t sign up for. I wish I could say this second loss was my last one, but in fact, it became the second of many. 

Regardless of how common the data suggest miscarriage is today, the reality is that it’s always heartbreaking for women and their partners.  

Thankfully, I was soon surrounded by a community that included my therapist and women who’d suffered similar losses. These were women who were further along in the journey than I was.

They became my Pregnancy Loss Tribe. They were my role models for learning how to cope and survive something I couldn’t conceptualize or process at the time. 

The Support of a Pregnancy Loss Tribe

Being a licensed therapist myself didn’t protect me from the pain even though I had the tools and training that allowed me to help others go through their own challenges. 

Grieving is a humbling experience. But my tribe showed me the importance of honoring my grief without apologies.

My tribe, some of whom I’d never even met in person, supported me virtually when I was up late at night in tears. 

They helped me make it through pregnancy milestones without my baby. They reached out to check up on me when my due date was near. 

They taught me so much about resilience, strength, and perseverance. I could move forward because I saw that it could be done…and that others had done it so many times before. 

I had to honor my process however it unfolded. 

If I couldn’t attend someone’s baby shower, or if I unfollowed someone on social media, that was okay. 

It was okay to cry throughout the day and feel frustrated when I felt like I couldn’t stop. 

It was okay to feel angry, jealous and embarrassed when a family member had a child on the date of my son’s death. 

I had to honor all the ugly feelings in order to let them pass. The more I tried to force myself into what I thought my grief should look like, the more intense those feelings became. 

So I did what I tell my clients to do: I surrendered.

I have so much love for the women in my pregnancy loss community. But my circle of women outside that community was equally as important. They loved me just as much and reached out to support me, too. 

They gave me a sense of identity where I could safely have some distance from the pain of being without a child. They showed me that life could still be enjoyable even when dreams change.

Embarking on My Grief Tour

Because of my age, my doctor suggested I try in-vitro fertilization (IVF), a process that was more emotionally draining than I’d anticipated. 

A year and a half of treatments and thousands of dollars later, with only a chemical pregnancy to show for it, I was left feeling deflated and desperate. I was also getting too old to qualify for additional treatments. 

After considering another attempt at conceiving naturally, another diagnostic test revealed that both of my tubes were blocked. 

I decided we needed a break from the emotional stress. I had to reclaim my body and spirit and step away from the narrative of failure that often comes with the fertility journey. 

So I made my way back to something I always loved but was neglecting: travel. 

Traveling became a different form of therapy. It helped me disconnect from the struggle I’d been going through so I could experience the joy of exploring other cultures. 

There were no longer any doctor appointments, medications, or procedures running my life.

I started planning, and it worked. It’s hard to be sad while you’re researching a travel itinerary for Cuba. 

If you think the ruins in Rome are impressive, wait until you see the ones in Greece. 

Plan a trip if you’re feeling sad. When all else fails, plan some more! 

Planning trips became my new (and expensive) antidote to pain. I was honoring my need for freedom from the weight of my emotions. Traveling was my way of doing just that.

The Lessons I’ve Learned From Pregnancy Loss

I’ve learned plenty of lessons since that time, and there are new lessons that I learn every day. 

Miracles Do Happen

Eventually, those familiar and uncomfortable pregnancy symptoms were back. I was, once again, pregnant after the medical community had told me it was impossible to conceive with two blocked tubes. 

Sadly, that pregnancy also ended in a miscarriage. But I still experienced a miracle. They really do happen.

Doctors Don’t Always Know Everything

Doctors can have an in-depth understanding of science and medicine. But they don’t know everything. 

I remember going over test results with my doctor and looking at my blocked tubes on the screen. She described how getting pregnant naturally was going to be practically impossible…until it was possible. 

Getting pregnant reinforced my belief in the power of the mind and the body. I had a glimpse of what could be possible if I just let myself feel free—undefined by any “failure” I’d faced during the fertility journey.

Beauty Can Come From Sadness

My journey isn’t over. My grief has led to some beautiful experiences. Traveling the world with my husband helped us redefine our relationship outside of the fertility world. 

I needed distance and a new perspective to reconnect with myself and align my work with who I am now. 

I’m a woman who is still hopeful…still expecting my miracle…and still learning to stay in the moment.

Making my way through the depths of my trials have confirmed that I can endure and persevere through unimaginable pain. I appreciate the wisdom that comes from the experiences I’ve had.

I’ve come to know so many other women who have done the same. But more importantly, I can now take what I’ve learned and help others make their way through the same journey, too. 

Originally published in Thrive Global on October 4, 2019.