MARY LOUISE KELLY, HOST:
More than 600,000 people in the U.S. have died from COVID-19, each leaving behind grieving friends, grieving family. For some Americans, it is hard to mourn when people in their communities - or even in their own families - don't believe in the science of the coronavirus. These dismissive attitudes add another level of pain and anger to their grief. Brett Sholtis at WITF in Harrisburg, Pa., has the story.
BRETT SHOLTIS, BYLINE: Stephanie Rimel is going through some of her brother's old things, including the cold medicines he used to treat his symptoms when he first got sick.
STEPHANIE RIMEL: And these are ones that he didn't quite finish. We really haven't thrown anything away, really.
SHOLTIS: Her brother, Kyle Dixon, died from COVID-19 in January. He was a state prison guard here in western Pennsylvania in a pretty rural, conservative community. Kyle was just 27 years old.
RIMEL: Like, I'll never get to be at his wedding. I'll never get nieces and nephews. Like, I'll never see him old. Like, that was the last birthday, in September, we got to celebrate with him.
SHOLTIS: Stephanie says her brother was led astray by misinformation about the virus. He got it from other prison guards, from friends on Facebook and some of his own relatives. Even after her brother had to be hospitalized, some family members were on social media repeating conspiracy theories and bragging about not wearing masks.
RIMEL: So we're angry. So when people try to, you know, talk about COVID, they try to justify it or say it's not real or, you know, look for a reason - well, he was this - it's really hard.
SHOLTIS: Now Stephanie and her younger sister, Jennifer, feel estranged from some of those family members.
RIMEL: I don't talk to them. I don't care to talk to them.
JENNIFER DIXON: They're posting the same stuff - it's a hoax.
SHOLTIS: Jennifer says if only they had seen what he went through.
DIXON: I wish they could have been there his last days and watched him suffer, watch his heart still be able to beat, his kidneys still producing urine because it was so strong, his liver still working. It was his lungs that were gone - his lungs. And that was only due to COVID.
SHOLTIS: After he died, Stephanie and Jennifer made sure that the death notice said that COVID is what killed Kyle, but a lot of other families want COVID left off death notices. Mike Kuhn is a funeral director in Reading, Pa. His three funeral homes have laid to rest hundreds of people who died from the virus.
MIKE KUHN: I've heard people where they're just like, I don't know why, but I just don't want to have COVID listed on the death certificate, and I don't want to hear that COVID had anything to do with my father's death. Like, people have said that to me.
SHOLTIS: Kuhn says many families want to minimize COVID's role in the death.
KUHN: You know, I've had people say, well, you know, my 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't really want to give a lot of credence to COVID.
SHOLTIS: In some cases, this creates a situation that psychologists call a disenfranchising death. Mourners feel they don't have the right to fully grieve because of controversy over the cause of death. Ken Doka is senior vice president of the Hospice Foundation of America. He pioneered the concept of disenfranchising death and a related concept, disenfranchised grief. He says this can occur when a person's death is tinged with a supposed moral failure and mourners fear judgment from others.
KEN DOKA: So, for instance, if I say, my brother - which he didn't - but if I say to you, my brother died of lung cancer, what's the first question you're going to ask? Was he a smoker? And somehow, if he's a smoker, he's responsible.
SHOLTIS: Doka saw this a lot during the HIV/AIDS crisis of the 1980s.
DOKA: One of the terms I got to hate was when people spoke about pediatric AIDS, they often used the phrase, these are innocent victims of this disease. Well, you know, to me, anybody who had it was an innocent victim.
SHOLTIS: Kyle Dixon's sisters have also encountered something like this. They say when they tell people their brother died from COVID, they're often asked whether he had pre-existing conditions or if he was overweight, as if he was to blame for dying. It's as if, to people in denial, the virus isn't deadly. If a person was overweight or old or had high blood pressure or diabetes, it becomes their fault that they died. Holly Prigerson is a sociologist specializing in grief. She says those judgmental comments, they come from cognitive dissonance.
HOLLY PRIGERSON: And anything, including death of a loved one from this disease, like, they just - they compartmentalize it. They're not going to process it. It gives them too much of a headache to try to reconcile.
SHOLTIS: Prigerson says fighting cognitive dissonance rarely works.
PRIGERSON: Don't waste your time trying to convince them of something that you're not going to convince them of.
SHOLTIS: For her peace of mind, Prigerson had to cut ties with some of her own family after her mother died of COVID. Kyle's sister Stephanie says what has been helpful is joining a support group with other grieving people who agree on the facts about COVID. And in June, they placed the headstone on Kyle's grave. It says beloved son, brother and uncle, and it has a very pointed message on it, too.
RIMEL: Yeah, it says [expletive] COVID-19 on it.
SHOLTIS: Her reasoning was simple.
RIMEL: We want to make sure that people know Kyle's story and that he passed away from the virus.
SHOLTIS: Stephanie says it really helps to know that long after she's gone, the truth will be set in stone.
For NPR News, I'm Brett Sholtis in Clearfield County, Pa.
KELLY: And that story comes from NPR's partnership with WITF and Kaiser Health News. For advice on coping with disenfranchised grief, please check out the recent Life Kit episode at npr.org/lifekit.
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