This is the final part of a 3 part blog series on exploring grief & loss. In this post, I will reflect on the unique challenges that may arise when the circumstances surrounding our loved one’s death and/or our relationship with that person were complex, and I will continue sharing my journey in working through grief after my friend died. This personal narrative is a continuation from part 2, so if you’d like more context here it is.

Disenfranchised & Anticipatory Grief

“Grief is not gauzy; it is substantial, oppressive, a thing opaque.” - Chimamanda Ngozi Adichie’s Notes on Grief.

When my friend Jill died, I was in the middle of a research internship the summer before my final year of college. I did not have an official bereavement leave in place, but gratefully my supervisor supported me in taking some time away after Jill’s death. When I returned to work, I struggled to focus on my research; my brain felt foggy, and I was constantly distracted, edgy, and on the verge of either crying or laughing at any given moment. I felt embarrassed and nervous explaining to colleagues that I was away due to a friend dying, feeling the need to justify my lack of productivity because this was a friend, not my “family.” I felt worried and uncertain of how to move forward with my life plans.

Kenneth Doka coined the term “disenfranchised grief,” which- in Doka’s words- “refers to a loss that’s not openly acknowledged, socially mourned or publicly supported.”

Disenfranchised grief may show up with:

Stigmatized loss (ex: loss by suicide, loss by addiction, loss by abortion or miscarriage, etc.)
Loss considered “less significant” to others in society (ex: loss of pet, loss of honorary relative, losing an adoption, etc.)
Loss of unrecognized relationships (ex: loss of partner you are unable to mourn publicly, loss of former or casual partner, etc.)
Non-death related loss (ex: loss of friendship, end of relationship, loss of job or home, etc.)

While disenfranchised grief shows up in many types of losses, for the purpose of this blog I’ll focus on how it presents in the aftermath of death-related loss.

When grief is not socially accepted or acknowledged in society (whether it is due to the circumstances surrounding a person’s death or our experience of that death), it further complicates and invalidates the experience of the griever. In my first blog, I highlighted Darcy Harris’ Oppression of the Bereaved, where she emphasizes how this disenfranchisement of grief is exacerbated by our westernized, capitalistic society: “Death and grief signify vulnerability, which is a sign of weakness. In a social system that is based upon competition and acquisition, weakness is not tolerable, and so grief goes underground.” When we feel invalidated by our grief response to loss, we are more likely to feel heightened shame, blame, hopelessness, and/or distress- and this further complicates our grieving process and can keep us in a cycle of physical and emotional turmoil.

Podcaster Loryn Denise, host of This Too Shall Suck Podcast: A Fresh Perspective on Grief, offers her personal experiences with disenfranchised grief after the death of her parents and her ex-partner. In her episode on Disenfranchised Grief, Denise shares how she turned to coping mechanisms that didn’t make her feel good in her mind or body, and explained how she felt like she had no other choice; she felt numb and misunderstood, especially by not seeing or knowing others in her community that had experienced (or openly talked about!) something similar to what she was going through. Denise also shares her experience with complex and conflicting emotions after her ex-partner, who had been abusive, died; she felt invalidated and disenfranchised when friends couldn’t understand why she wasn’t simply happy he wasn’t around anymore. To Denise’s friends, this was straightforward; this ex-partner had been harmful to her, so she should be relieved he is gone. While this was true to an extent for Denise, it was also true that the part of her that had loved him was still mourning this loss in a different, more nuanced way. Our emotions are not binary or definite- as is true with most parts of our lives; our emotions are on a fluid and ever-evolving spectrum- and we continue to perpetuate this cycle of disenfranchisement on a societal level when we individually dismiss or avoid talking about peoples’ unique and collective grief experiences.

Anticipatory grief is when we experience grief in anticipation of a death-related (or other kind of) loss; this is often experienced when a loved one is diagnosed with a terminal illness, as one example. People who are experiencing anticipatory grief often feel disenfranchised in their grief journey, as it is difficult to give themselves permission or self-acceptance to feel the full range of their emotions when it does not always feel socially acceptable to do so. This can result in increased worry, isolation, sadness, hopelessness, and feeling like a burden to others.

From my clinical and personal experiences, I have heard people name their frustration and invalidation when others say to them in the aftermath of their loved one’s death something like: “at least you already knew they were dying…that’s better than having them unexpectedly die.” Having this invalidation of someone’s anticipatory grief experience makes the grieving process after the loved one’s death even harder and can exacerbate painful emotions and feelings.

As I often tell clients, there is no right or wrong way to grieve, and there is no “good” or “easy” death. While some people may experience emotions like relief or security when someone dies (which I more often hear in response to someone dying in older age and having lived a “long life,” or someone ending a battle with terminal illness- as two examples), the loss of a physical presence in the world is still a permanent and stark transition- regardless of the manner in which someone died and our relationship to that person. And everyone is deserving of feeling and experiencing their full range of emotions related to each and every type of death-loss.

Ambiguous Loss

Ambiguous loss, pioneered by Dr. Pauline Boss, is another type of loss that is often not acknowledged and is invalidated due to the intangibility or uncertainty related to the loss. As highlighted on Speaking Grief (highly recommend checking out this treasure chest of resources from WPSU Penn State & New York Life Foundation, special shout out to their phenomenal documentary!), ambiguous loss is when you are “grieving someone who is physically absent but psychologically present” (ex: losing contact with someone who is missing, having inconclusive information about someone, etc.), or “grieving someone who is physically present and alive but psychologically absent” (ex: navigating a loved one progressing with Alzheimer’s disease, etc.). In a similar vein to disenfranchised grief and anticipatory grief, I will speak to ambiguous loss in the context of death-related loss.

The ambiguity and uncertainty that comes from ambiguous loss often results in unresolved and complicated grief for those navigating the loss of a loved one. Ambiguous loss brings up many painful responses or side effects in the mind and body throughout the grieving process, including feeling frozen or paralyzed in grief, persistent sadness or hopelessness, blocked cognition or memory challenges, and other difficulties in coping and functioning. In her book Ambiguous Loss: Learning to Life with Unresolved Grief, Pauline Boss emphasizes the way ambiguous loss disrupts our understanding of the world and our perceived idea of “truth” or having finite answers. Boss also highlights to Krista Tippett on the OnBeing podcast episode, Navigating Loss Without Closure, that we have learned to bury our grief as a continued response to the traumatic roots of how our nation was colonized: “We are a nation founded on unresolved grief. As a result, we don’t like to talk about death.”

Boss expands on how western thinking often promotes the avoidance of suffering, or avoidance of all difficult or painful emotions- especially when pushing down our difficult or complex emotions allows us to be more productive, valuable, contributing members in our capitalistic society. However, as she emphasizes- the problem comes when there are problems that “don’t have a perfect fix” or a concrete solution, or there are some situations where we will never have answers or clarity. This is where many grievers struggle or feel stuck with ambiguous loss associated with someone’s death: how does one move forward or find closure, especially after seeing how our continued and complicated grief is often disenfranchised? How can we learn to sit with the discomfort that we may never know if (or how) our person died?

While Jill’s death was not a formal ambiguous loss (specifically following Boss’ definition), there are many unanswered questions and uncertainties I have learned to sit with. Although investigators legally labeled her death as accidental and her body was retrieved, in the years following her accident I spent many hours fixating on the details of her accident I didn’t know; why or how did this happen- why did she fall off this mountain, and how did she not see the edge? Did she feel pain when falling- was she scared or fearful? Why did she go off on her own and leave her hiking group- was she feeling upset, worried, lonely? What were her final thoughts or feelings before permanently losing consciousness? These lingering and unsettling questions complicated my grieving process, and I felt paralyzed with how to move forward.

Coping & Support

“Death is everywhere, but it is also nowhere. Grief is a universal experience, but it is expected to be hidden from sight as if it were a source of shame rather than the result of loving and attaching to others.” - Darcy Harris, Oppression of the Bereaved

A theme I have woven throughout this blog series is that we cannot experience grief without love, or love without grief; they are forever intertwined, or as Marisa Renee Lee writes- grief is love. So in a society that often messages otherwise through dismissing or invalidating this reality, how do we cope with and support each other through navigating death losses in our lives?

Swarnaskhi Sharma at Calm Sage offers some coping strategies for those navigating disenfranchised grief: acknowledge the loss, express your feelings, take care of yourself, reach out to your support system, and create a ritual to honor your loved one in the way that feels fulfilling to you. And, most importantly, Sharma encourages us to continue showing up for and supporting others who are grieving. In a similar vein, Deanna Upchurch at HopeHeath (a non-profit providing hospice, palliative care, home care, and Alzheimer’s support services) encourages people navigating anticipatory grief to take care of themselves by taking time to rest, restore, and care for self; connecting to support groups and community resources; and remembering that anticipatory grief is a normal and valid experience.

For those navigating ambiguous loss, Pauline Boss shares a coping strategy rooted in the Eastern practice of dialectical thinking; I have found this strategy effective for clients (and myself)! The core of dialectical thinking is learning to simultaneously hold two opposing ideas in your mind. For example, if there are answered questions about your loved one’s perceived death, Boss would offer: “he’s gone, he’s probably dead, and maybe not.” For the ambiguous loss elements I experienced with Jill’s death, I say to myself: “she may have been in pain prior to dying, and maybe not.” It is a reminder to self that both ideas are possible- in reality, it could be either- and naming both possibilities is my only reality or truth of this situation…and this framing offers some comfort.

While there are steps we can take on an individual level to cope with our grief, there are steps we can also take on a societal level to support others in feeling seen and heard in their grief journeys. Loryn Denise invites listeners to make space for and validate everyones’ reactions to or experience of grief, even if we do not fully relate to or understand how they feel. In Speaking Grief, viewers are invited to take collective action to normalize grief by openly talking about our grieving process, and specifically about our difficult emotions with death and loss.

Excerpt from Marisa Renee Lee’s *Grief is Love*

There are limited guarantees we have in life; there is way more uncertainty and ambiguity than certainty and clarity in what our futures hold. The one thing we are all guaranteed is that someday we will die, and our loved ones will die. Even writing this now brings me pain in imagining a future where loved ones of mine are no longer in the physical world, but it also offers me hope in the opportunities for collective support we have through this shared experience. Despite the differences we all hold and carry- in identities, cultures, communities, experiences- there is a universality in grief, loss, and death. Grief is something every human in the world will have to navigate at some point in their lives, and what an incredible opportunity we have to show up for each other and work towards normalizing openness in vulnerability and grief experiences. As Speaking Grief calls us to action to normalize grief on a personal and societal level, I invite us to consider how we may extend compassion and validation to self and others while navigating grief and loss.

Photo credit: Denmark 2020, personal photo. In honor of Jill and her love of the natural world, and to my community who continues to support me through my grief journey.

“So you mustn’t be frightened, if a sadness rises in front of you, larger than any you have ever seen; if an anxiety, like light and cloud-shadows, moves over your hands and over everything you do. You must realize that something is happening to you, that life has not forgotten you, that it holds you in its hand and will not let you fall.” -Rainer Maria Rilke, Letters to a Young Poet.

If you are grieving the loss of someone you love, we are holding you close in our hearts and minds and are here for you at Room to Breathe. We invite you to explore our therapy and yoga/mindfulness offerings to support you in your grief journey.

Join Margy for a grief processing workshop, Stitching the Wound: Caring for Ourselves in Grief on Sunday, July 28th at 3 pm. Learn more + register here.

Margy offers a weekly, virtual grief & loss support group for people who have had a loved one die recently; and a biweekly, virtual continuing bonds support group for those who are interested in finding community with others who are looking for meaning and connection to those they have lost and loved. Please reach out if you’re interested in learning more: margy@roomtobreathechicago.com.