The Grief We Won’t Allow

What we lost when we stopped mourning the unvaccinated

When someone dies of a vaccine-preventable disease, there’s a question that follows almost immediately. You’ve heard it. You’ve probably asked it yourself.

Were they vaccinated?

Sometimes we ask because we want to understand the epidemiology. Sometimes we ask because we’re exhausted and frustrated, looking for a reason this happened that isn’t random or terrifying. And sometimes, if we’re being honest, we ask because the answer determines how much sympathy we’re willing to extend.

If the person wasn’t vaccinated, something shifts. The loss becomes a lesson. The grief becomes conditional. And we may not say it out loud, but the implication is there: this was preventable, and they chose wrong.

I think a lot of us ask the question for a more personal reason, too. If the person who died was unvaccinated, the death is tragic, but it also feels far away. It can’t happen to us. We made the right call. The question isn’t always about judgment. Sometimes it’s about self-reassurance, a way to manage our own fear about a world where people still die of preventable diseases. But the effect on grieving families is the same regardless of our intent. Let’s discuss...

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Before I go further, I want to be clear about something, because I think it’s easy to misread where this essay is headed. Reporting vaccination status matters a great deal. It matters for disease surveillance. It matters for understanding outbreaks. And yes, for some families who are hesitant, seeing these stories in the news might just be what tips the scale toward protecting their kids. I am not arguing against transparency.

What I’m arguing against is what happens after the reporting. The comment sections. The quote-tweets. The way a person’s death becomes a referendum on their choices instead of a tragedy that deserves to be mourned. There’s a difference between informing the public and performing moral superiority — the comment sections start reading like Cell Block Tango (“he had it comin’, he had it comin’, he only had himself to blame!”) — and we have not been great at knowing which one we’re doing.

That distinction matters for everything that follows.

Once COVID-19 vaccines became available, this dynamic intensified in ways I hadn’t seen before. Something about the speed of it all — the deaths, the politics, the whiplash of guidance during a global pandemic — made it harder to hold complexity. It felt like a line was drawn — maybe not intentionally, but unmistakably — between those of us who lined up for the vaccines and those who didn’t. And over time, that line hardened into something more like a wall. I didn’t have language for what was happening on the other side of that wall until I watched a documentary called I’m Still Here, Love, directed by Megan Daniels. The film follows the families and friends of three unvaccinated men who died from COVID-19. It doesn’t editorialize. It just shows their people, their lives, and the grief left behind. And in it, the families describe something that resonated deeply — the experience of being unable to openly mourn, of being met with judgment instead of compassion, of learning to stay quiet about how their loved one died.

What they were describing has a name. Kenneth Doka, a grief counselor and researcher, coined the term disenfranchised grief decades ago. It describes grief that isn’t openly acknowledged, socially supported, or publicly mourned. The loss is real, but the world around you signals that it doesn’t count. That it doesn’t qualify. Doka was originally describing things like the death of an ex-spouse, or grief experienced by someone society doesn’t see as a legitimate mourner. But the families in this film were experiencing exactly that — not because their grief was invisible, but because the world had decided their loved ones’ deaths didn’t deserve the same compassion.

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And we didn’t just fail to make that space; I’d argue that we made it harder. Social media was full of posts cataloguing the deaths of unvaccinated people with a tone that ranged from weary to gleeful. The subtext was consistent: they had a choice, and they chose wrong. Some of it came from random accounts. Plenty came from people in public health, in medicine. People who were running on fumes and processing their own grief and rage in real time, which I understand. But understanding the impulse doesn’t undo the damage.

I’m not going to pretend I was immune to it. Early on, exhausted and frustrated, I felt the pull of that thinking, too. It was easy to frame vaccine refusal as a simple binary. Information was available. The choice was clear (to me). Anyone who didn’t take it was accepting the consequences. That framing felt clean and logical. It was also fundamentally wrong about how people actually make health decisions…

People don’t make choices in a vacuum. They make them inside information ecosystems that are fragmented, contradictory, and increasingly shaped by algorithms that reward fear over nuance. They make them inside communities where trust in institutions has been eroding for decades, sometimes for good reasons. They make them based on what their doctor said, what their pastor said, what their cousin posted on Facebook, and what a politician they trusted told them at a rally.

None of that excuses misinformation. But it should change how we respond to the people caught inside it.

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And when someone dies of a disease we had a vaccine for, and our first move is to establish whether they deserved our sympathy, we aren’t doing public health. We’re doing moral accounting. The communities watching us do that take note.

Dr. Craig Spencer, an emergency medicine physician and public health professor at Brown, recently attended the Children’s Health Defense (CHD) conference in Austin and wrote about it for STAT. One moment from his piece has stayed with me. Peter Hildebrand’s 8-year-old daughter, Daisy, died of measles last year. She was unvaccinated. And from the CHD stage, in tears, he thanked the organization for showing up for his family and his community.

A father lost his child to a vaccine-preventable disease, and he’s grateful to the anti-vaccine movement? They didn’t win that family over with better science. They won them over by showing up with presence rather than judgment. By offering him grief that the public health community withheld. A vaccine would very likely have saved Daisy’s life. That is the brutal truth of this, and it has to coexist with everything else I’m about to say.

When a child dies, this gets more complicated, and I want to take a moment to acknowledge that complexity rather than skip past it. Children don’t choose their own vaccination status. Their parents do. And in Daisy’s case, a parent made a decision, shaped by the information around them, by their community, by who they trusted, and it is the child who paid the ultimate price. Vaccines work. We can’t know with 100% certainty what would have happened in any individual case, but vaccination changes the odds dramatically. That’s not opinion, that’s decades of evidence, and nothing I’m saying here changes that…

But directing our anger at parents who are already living inside the worst possible outcome of their decision, who will carry that for the rest of their lives, does not vaccinate a single child. It doesn’t undo what happened. What it does is push every other hesitant parent in that community further from us and closer to whoever shows up without blame. The shame-blame game won’t bring those children back, and I’d argue that it only serves to weaken trust in public health and science.

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I talk to audiences about this, and I can feel the discomfort in the room. Especially among people who spent the pandemic fighting misinformation, who lost colleagues, who watched preventable deaths pile up while being screamed at by people who didn’t believe the virus was real. I get it. I’ve lived it. The exhaustion is legitimate, and so is the grief and frustration.

Also, it’s not fair. We’re the ones who have to hold the line on empathy while people call us shills and sheep, when they respond with laughing emojis when we post about vaccines, and mock us for caring. I can assure you that Children’s Health Defense isn’t sending emails to followers about being kinder to scientists. The asymmetry is real, and it’s exhausting. But when we perform our frustration in comment sections, we’re not protecting ourselves. We’re handing them exactly what they need — “proof” that public health folks and scientists are the cold, credentialed, and contemptuous people they accuse us of being. The high road isn’t about being better humans. It’s about being effective ones. They’re not trying to vaccinate anybody. We are. That’s the only reason we need.

And the public health mandate still doesn’t come with conditions. We don’t get to choose who deserves empathy based on whether they followed our recommendations. The reason most of us got into this work is that every person’s health matters. Every person’s death matters. Every family’s grief deserves to be met with something other than “well, what did they expect?”

I’m not asking us to stop talking about the importance of vaccination. I’m not asking us to stop reporting on vaccination status in outbreaks. I’m asking us to separate the advocacy from the judgment. Making grief conditional on compliance is not a communication strategy. It’s a behavior that destroys trust, and we’ve been dressing it up as righteous frustration.

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We cannot build trust with people whose losses we refuse to honor.

I keep coming back to that. It captures something I think we’ve underexamined over the last five years (and beyond). Not a policy failure or a messaging failure. Something deeper. Something about who we decided was worthy of our compassion and who wasn’t, and what that cost us.

This shapes whether people show up at the next clinic. Whether they believe us about the next outbreak. Whether they see us as people who care about them or people who will use their worst moment to make a point.

If we want to do better, and I think most of us do, it starts with being honest about what we’ve done. Not just what the algorithms did. Not just what the politicians did. What we did, in our posts and our group chats and our reflexive first question when someone died.

Were they vaccinated?

The answer to that question matters. It matters for epidemiology, for outbreak response, for helping other families understand the stakes. But somewhere along the way, we started using the answer for something else entirely — as a way to decide whether grief is legitimate, whether a death deserves our compassion, whether a family has earned the right to mourn without judgment. That was never ours to decide.

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If this piece resonated with you, I’d encourage you to watch I’m Still Here, Love. It does what I’ve been trying to do in words here, but better, and with the faces and voices of real families. One of the people in the film, Jessica Watt Dougherty, who lost her dad to COVID-19, said something that has stayed with me: “It’s almost like his unvaccinated status erases the impact that his death had on my life.”

We’re making the film available for screening through May 8th. Paid Substack subscribers: we’re sponsoring 100 free tickets — check your inbox for a separate email with the link! First-come, first-served. For everyone else, tickets are available for $10 through Kinema — the lowest price we could offer. Honestly, we’d make it free if we could. We just want as many people as possible to see this film because it really is that impactful. Maybe we can set up a book-club-style discussion to debrief afterwards? Let us know in the comments if you’d be interested in that!

Stay Curious,

Unbiased Science