Shortly before the World Health Organization declared COVID-19 a pandemic, one of my psychotherapy clients—I’ll call her Sarah—contacted me in distress. Her beloved mother had just died after an unexpected short illness. At the time we spoke, Sarah had no idea if COVID-19 had played a part in her mother’s sudden decline, but one thing was certain: restrictions associated with the pandemic were profoundly affecting her bereavement experience.
Blocks on travel had prevented Sarah from traveling to the country where her parents lived, and even if she'd managed to go, the hospital where her mother lay dying had barred visitors due to the virus. There was no provision for remote connection via video calling. The last communication from her mother was a phone call, just before she was admitted—a call that Sarah, to her intense sorrow, had missed. Under lockdown, far from family members, she felt alone in her grief.
When I saw an advertisement on one of my professional networks, I thought of her. Facilitated by grief professionals, the online support session was specifically for women who had lost their mothers to COVID-19, or whose loss had been colored by circumstances of the pandemic. Straightaway I sent Sarah an email with the link.
The next time we met for an online therapy session, I inquired about whether she’d attended the support group. She had, but her experience had only increased her sense of isolation. As Sarah began to speak about her loss of her mother, she told me, a private chat message from one of the facilitators appeared. She couldn’t recall the precise wording, but the message was clear.
Your mother didn’t die OF COVID, so you don’t belong in this group. You need to leave.
My initial response was incomprehension. How could this have happened? I had double-checked the criteria to confirm the appropriateness of Sarah's participation. She had explained the context of her mother’s COVID-era death—in all its knowns and unknowns—in her application to participate. After my surprise faded, two trains of thought emerged.
First, the incident struck me as a stunningly insensitive gaffe for two experienced grief practitioners to make, and I suspected that the online context of the support group had influenced matters. Had the meeting been a non-virtual gathering, with no access to a blush-sparing private chat function, would two seasoned counselors really have silenced and excluded Sarah? I suspected not. Offline, participants would have physically traveled to gather in a circle of chairs, and with access to the full range of body language and all the other intangibles that come with physical co-presence, the facilitators would likely have behaved very differently.
Second, I thought about disenfranchised grief.
Why 'disenfranchised grief' is amongst COVID-19's incidental epidemics
Disenfranchised grief is a phrase coined by grief theorist Kenneth J. Doka, Ph.D. Disenfranchised grief occurs when sadness over a loss is pushed aside, not recognized, or otherwise discounted. Sometimes people experience disenfranchised grief because of who they are: friends, rather than family; the mistress, rather than the widow; the members of a person’s online gaming community, rather than their ‘in real life’ associates. Sometimes disenfranchised grief occurs when people question someone’s grief over who was lost, as sometimes happens in response to a pregnancy that has ended in miscarriage, the death of a cherished pet, or the demise of a celebrity or public figure who had had a profound influence on the griever's life but whom they did not personally.
In her ejection from this grief group, though, Sarah experienced disenfranchised grief because of how she lost her mother, the cause of death itself. The fatal illness wasn’t COVID, or at least her mother's death hadn’t yet been verified as COVID-related, so she apparently didn’t belong in the group. When I told her how sorry I was that this had happened, she said something that really got me thinking.
"Actually," Sarah said, "it sort of happens all the time. The first thing people ask is, 'Was it COVID?' Like the way she died is more important than her. And that hurts."
When supporting or responding to someone who’s experienced a loss, we often struggle more when our own death anxiety is triggered. The former smoker, hearing about the death of a friend’s father from lung cancer, may be unable to resist asking if the deceased smoked. A keen rock climber, learning of a death on the crag or the mountain, may solicit all available details of the accident, one question lurking at the back of his or her mind: Could it happen to me? It can affect doctors, too. In my own research on physicians’ emotional responses to patient death, I asked my research participants to tell me a story about a death that had particularly affected them. The stories they told—often weeping as they did so—were almost always about losing a patient who was a similar age, had similar interests, or who—worst of all—was also a doctor.
When we identify in some way with the deceased, or when we fear we too might be vulnerable to the cause of their death, our threat systems are activated. In the moment, that can reduce our bandwidth for empathy and our flexibility and sensitivity in responding. The novelty and arbitrariness of COVID-19, an invisible, ever-present threat that hits everyone differently and from which so few are immune, increases our chances of saying, without thinking, "Was it COVID?"
Perhaps a kind of desensitization or compassion fatigue is also at work here. When virtually every news story is COVID-related, when the word is said, heard or read dozens of times a day, we are strongly primed to wonder if every death has come at its hands. With so much news, so much suffering, so much death, the individual humanity and experience of both those who died and those who grieve is too easily diminished and too readily forgotten.
In the coming days, weeks, or months, you may find yourself face to face—virtually or otherwise—with someone who is bereaved. "Was it COVID?" may spring to your mind. Stop before you ask it, considering how the question may unintentionally disenfranchise someone’s grief, or dehumanize the person lost. Respond instead in a way that honors their personhood.
I didn’t know her well. I would love to hear about her sometime. Knowing you, I can imagine she was wonderful.
I know how much you loved him. I am here to listen and be with you if you need me.
I have so many wonderful and warm memories of her.
I am so sorry.
Instead of asking if a death was due to COVID, recall the beautiful advice of the late great poet Mary Oliver in her poem "When Death Comes": "think of each life as a flower, as common as a field daisy, and as singular." When we allow the manner of death to pull focus from the beauty, meaning and singularity of a person’s life, the risk of disenfranchised grief lurks just around the conversational corner.