Why Prolonged Grief Shouldn’t Be Considered a Mental Illness—Especially During a Pandemic

It is August 2018. We are at a cemetery in New Jersey where some of my ancestors are buried. My father finds his parent’s grave, and places two stones on an ever-growing pile of rocks. I never met them in this life. When I place my stones, I am thinking about how sickness and weakened immune systems embeded themselves in the genes of Jewish people, Black people, and other descendents of genocide and trauma. I think about showing up in the mental health system as a kid—mainly due to the consequences of unmitigated trauma and distress—and being told there was something wrong with me. 

As we shift to my aunt’s grave, I watch as my father prepares to recite the mourner’s Kaddish—the prayer for the dead. He does not need to read from a book. He has been reciting these words for 45 years. These are the words that formed the backbone of how he marks time: one more year with his parents gone.

My father holds his hand over his sister’s name on her stone, and sobs as he recites the words. In this moment, I am proud of my father, and yet I have never been more devastated. In this moment, I understand exactly why grief hugged him like a tight blanket and never let him go. In this moment, I am angry for the ways his grief stole time, energy, and attention from me and from my family. In this moment, I see the trauma like an umbilical cord, a blood-red string from his belly to mine. I imagine myself severing this stranglehold of trauma that has us both sinking in the same boat, drowning in the same sea. I love you, Dad. I want healing for you. I want healing for me, too. 

In a culture that so often defines mental health by our ability to produce, function, work, minimally impact others, and appear as “normal” as possible, however, there is no space for grief. This makes the addition of prolonged grief disorder to the newly updated DSM, short for the Diagnostic and Statistical Manual of Mental Disorders (aka the “bible of psychiatry”), even more disturbing and misguided.

Many of us have been conditioned to believe that a mental illness is just like diabetes—a disease that needs to be managed and treated with medication. But my lived experience, my work in the mental health and disability justice world for over a decade, the wisdom of my community members, and research paints a different picture: Social, political, and economic factors are critical in getting at the root of mental distress and suffering.

When we think of the myriad of ways marginalized people are denied dignity, humanity, and justice—how long is the “right” amount of time to grieve? Not one loss, but many? Generations? Thousands? Millions? In one way, I imagine it, grief that doesn’t go away is a justified response in a world that doesn’t allow us to stop, to rest, or be present. Prolonged grief, like madness, is an act of resistance.

Getting to the root cause of grief

To say that we are ill if we cannot get up and get on with life in the face of a neverending onslaught of trauma, oppression, loss, distress, and chaos is deeply misguided. Even a trauma-informed shift from “what is wrong with you” to “what has happened to you” doesn’t feel right. It doesn’t feel complete enough because this is not just about me.

Grief that doesn’t go away is a justified response in a world that doesn’t allow us to stop, to rest, or be present.

I need to ask bigger and deeper questions that get at my roots: What happened to my family? Who were they before capitalism, colonialism, and the invention of whiteness (the greatest sources of distress, suffering, and grief on Earth)? Who did they become because of this violence? What have I (and my soul) lost while upholding these same values? My grief work and healing work lives here. It is ancestral work. For me, my healing will not be found in a therapist’s chair. I know I need to start with my family.

I was a senior in college when my aunt died suddenly and unexpectedly. In many ways, her death led me back home—to my Judaism, to (one of) my culture(s), and to my ancestral practices. Her funeral was handled in an Orthodox fashion, and for seven days, we sat shiva. I learned that my people know grief. They knew grief deeply. So deeply that there is an entire process laid out for our mourning. We do not cook or clean. Instead, we receive. We sit, talk, listen, laugh, and eat. We sing our songs and read our prayers. Divesting from the individualistic values that white supremacy enforces allowed me to lean into the magic of rituals and my community. It gave me a container for my mourning as a lifelong process that I did not have to navigate alone.

I did not put my grief down. We dance with each other, early in the morning and late at night, and it isn’t always pretty. I hear my aunt’s voice in my head, and I talk to her all of the time. I bring her into every room I can and I see her in my dreams. If I am psychotic, I am glad to be because we love each other, still. We know each other, still. When I told my partner, Thabiso Mthimkhulu, (who is a brilliant Afro-Indigenous ancestral healer) about this new diagnosis, he laughed and said, “Grief is a ritual we have the honor of engaging in with ancestors that walk alongside us. It is not something to bury, like we do with the flesh and bones our souls are protected by.”

My issue is with an institution, a medical establishment, that believes and upholds the myth that six months is “the correct timeline” for grieving.

Make no mistake: I want us all to heal. I want us all to have access to what we need (whether that is therapy, a somatic healer, pills, herbs, time away from your life, childcare, more money, etc.). If this label, prolonged grief disorder, allows you to access something that brings you comfort, or ease, or relief (and if you made an informed choice), then use the tools you have access to. My issue does not exist here.

My issue is with an institution, a medical establishment, that believes and upholds the myth that six months is “the correct timeline” for grieving, which is the metric the DSM uses to determine what constitutes prolonged grieving. An institution that would rather dig its heels into apathology-based understanding of mental distress, than ask itself why we even need diagnostic codes to get care and support in the first place? My issue is with a country that sees no irony in medicalizing grief when millions of people all over the world have died alone, away from loved ones, in cages, cells, and hospital beds; in corners and on floors (or if they’re lucky), with loved ones saying goodbye through an iPad.

During the pandemic, families and communities have been unable to engage in cultural or religious grief and mourning practices, including funeral and burial practices that have deep ancestral and spiritual meaning. These wounds of the spirit and soul will have profound impacts on us, including prolonged mental distress or grief that doesn’t go away in six months. Why should it? Grief is sacred. Grief is an honor.

When we have the space to grieve

What becomes possible when we have the space to grieve? What rituals and practices can we tap into to sustain our spirits? Poet Malkia Devich Cyril describes grief as “every response to loss.”

When my maternal grandmother was dying, I sat sifting through her photo albums, making collages, smelling her sweaters, trying on her skirts, and immersing myself in her world. I painted her a birdhouse using her brushes and supplies, just like she had painted birdhouses. I placed it on the window sill of her hospice bedroom (the place she took her last breath in), and hung one of her paintings on the wall. Now, her art fills the walls of my home and lives on my left arm as a tattoo. Her clothes fill my closet. Her Josephine necklace sits on my neck. The small memories, items, movements and moments—this is how I process. It is how I make sense and remember. Because if I don’t, I worry what I will pass down to my daughter. Grief will demand to make its presence known. It will find somewhere to live, and I don’t want it to be inside of her.

These days, I have the honor to work with healers, herbalists, bodyworkers, and care workers who are justice-oriented, and hold space for the full range of what I hold in my bodymind without requiring a diagnosis or label. They know that healing has no timeline, and let me lead the way. Five years later my grief is a palpable heartbeat that courses through me. Let me have it. Let me die with it. My grief tells me I loved. I lived. I had.

Stefanie Lyn Kaufman Mthimkhulu (they/she) is a white, queer and non-binary, disabled, sick, neurodivergent care worker and educator of Ashkenazi Jewish and Puerto Rican ascent. They are rooted in a historical and political lineage of Disability Justice and Mad Liberation; and show up for their communities as an organizer, parent, doula, peer supporter, writer, and conflict intervention facilitator. Their work specializes in building non-carceral, peer-led mental health care systems that exist outside of the state, reimagining everything we’ve come to learn about mental distress, and supporting care workers to build access-centered, trauma responsive practices that support whole bodymind healing. Stefanie is also the Founding Director of Project LETS, and serves on the Board of IDHA and the Disability Justice Youth Center.