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