[Editor鈥檚 note: This story contains language references that some readers may find offensive.]
Months after Kyle Dixon died, his old house in Lanse, Pennsylvania, is full of reminders of a life cut short.
His tent and hiking boots sit on the porch where he last put them. The grass he used to mow has grown tall in his absence. And on the kitchen counter, there are still bottles of the over-the-counter cough medicine he took to try to ease his symptoms at home as covid-19 began to destroy his lungs.
Dixon was a guard at a nearby state prison in rural, conservative Clearfield County, Pennsylvania. He died of the virus in January at age 27. His older sister Stephanie Rimel was overwhelmed with emotion as she walked through Dixon鈥檚 home and talked about him.
鈥淚鈥檒l never get to be at his wedding,鈥� Rimel said. 鈥淚鈥檒l never see him old.鈥�
Her expressions of grief, however, quickly turned to anger. Rimel recounted the misinformation that proliferated last year: Masks don鈥檛 work. The virus is a Democratic hoax to win the election. Only old people or people who are already sick are at risk.
Rimel said her brother believed some of that. He heard it from other prison guards, from family and friends on Facebook, she said, and from the former president, whom he voted for twice.
Falsehoods and conspiracies have fostered a dismissive attitude about the coronavirus among many people in rural Pennsylvania, where she and her siblings grew up, Rimel said. And, because of the misinformation, her brother didn鈥檛 always wear a mask or practice physical distancing.
When family members expressed dismissive beliefs about covid, Rimel鈥檚 grief became even more painful and isolating. Rimel recalled a particularly tough time right after her brother had to be hospitalized. Even then, family members were repeating conspiracy theories on social media and bragging about not wearing masks, Rimel said.
Some of the people who attended Dixon鈥檚 funeral are still sharing covid misinformation online, said another sister, Jennifer Dixon.
鈥淚 wish that they could have been there his last days and watched him suffer,鈥� she said. 鈥淲atch his heart still be able to beat. His kidneys still producing urine because [they were] so strong. His liver still working. Everything. It was his lungs that were gone. His lungs. And that was only due to covid.鈥�
Both sisters wanted to be unambiguous about what had killed him. It reads, 鈥淜yle had so much more of life to live and COVID-19 stopped his bright future.鈥�
While these sisters have chosen to be outspoken about what happened, other families have opted to keep quiet about deaths from covid, according to Mike Kuhn, a in Reading, Pennsylvania.
Kuhn鈥檚 business did not handle Kyle Dixon鈥檚 funeral, but his chain of three funeral homes has helped bury hundreds of people who died from the coronavirus. He said about half of those families asked that covid not be mentioned in obituaries or death notices.
鈥淵ou know, I鈥檝e had people say, 鈥楳y mother or my father was going to die, probably in the next year or two anyway, and they were in a nursing home, and then they got covid, and you know, I don鈥檛 really want to give a lot of credence to covid,'鈥� Kuhn said.
Some families wanted to have their loved one鈥檚 official death certificate changed so that covid was not listed as the cause of death, Kuhn added. Death certificates are official state documents, so Kuhn could not make that change even if he wanted to. But the request shows how badly some people want to minimize the role of the coronavirus in a loved one鈥檚 death.
Refusing to face the truth about what killed a family or community member can make the grieving process much harder, said , who works as an expert in end-of-life care for the and has written books about aging, dying, grief and end-of-life care.
When a person dies from something controversial, Doka said, that鈥檚 called a 鈥渄isenfranchising death.鈥� The term refers to a death that people don鈥檛 feel comfortable talking about openly because of social norms.
So, for instance, if I say my brother died of lung cancer, what鈥檚 the first question you鈥檙e going to ask 鈥� was he a smoker? And somehow, if he was a smoker, he鈥檚 responsible.鈥�
Ken Doka, an expert in end-of-life care for the Hospice Foundation of America
Doka first explored the concept in the 1980s, along with a related concept: 鈥渄isenfranchised grief.鈥� This occurs when mourners feel they don鈥檛 have the right to express their loss openly or fully because of the cultural stigma about how the person died. For example, deaths from drug overdoses or suicide are frequently viewed as stemming from a supposed 鈥渕oral鈥� failure, and those left behind to mourn often fear others are judging them or the dead person鈥檚 choices and behaviors, Doka said.
鈥淪o, for instance, if I say my brother died of lung cancer, what鈥檚 the first question you鈥檙e going to ask 鈥� was he a smoker?鈥� Doka said. 鈥淎nd somehow, if he was a smoker, he鈥檚 responsible.鈥�
Doka predicts that Americans who have lost loved ones to covid in communities where the disease isn鈥檛 taken seriously may also encounter similar efforts to shift responsibility 鈥� from the virus to the person who died.
Dixon鈥檚 sisters said that鈥檚 the attitude they often perceive in people鈥檚 responses to the news of their brother鈥檚 death 鈥� asking whether he had preexisting conditions or if he was overweight, as if he were to blame.
Those who criticize or dismiss victims of the pandemic are unlikely to change their minds easily, said , a sociologist specializing in grief. She said judgmental comments stem from a psychological concept known as cognitive dissonance.
If people believe the pandemic is a hoax, or that the dangers of the virus are overblown, then 鈥渁nything, including the death of a loved one from this disease 鈥� they compartmentalize it,鈥� Prigerson said. 鈥淭hey鈥檙e not going to process it. It gives them too much of a headache to try to reconcile.鈥�
She advises that people whose families or friends aren鈥檛 willing to acknowledge the reality of covid might have to set new boundaries for those relationships.
As Rimel continues to mourn her brother鈥檚 death, she has found relief by joining bereavement support groups with others who agree on the facts about covid. In August, she and her mother attended a remembrance march for covid victims in downtown Pittsburgh, organized by the group .
And in June, a headstone was placed on Dixon鈥檚 grave.
Near the bottom is a blunt message for the public, and for posterity: F鈥� COVID-19.
Long after they are gone, the family wants the truth to endure.
鈥淲e want to make sure that people know Kyle鈥檚 story, and that he passed away from the virus,鈥� Rimel said.
This story is from a partnership that includes , and .