People standing around a casket adorned with flowers that has not yet been lowered into the grave. The photo is framed so that the people's heads are not visible.

My Parents Paid the Ultimate Price for Disinformation

People standing around a casket adorned with flowers that has not yet been lowered into the grave. The photo is framed so that the people's heads are not visible.
(Photo by Rhodi Lopez on Unsplash)

Commentary, Natalie Henson for Chico Sol via Ethnic Media Services

For those of us who have lost a parent to illness, or conspiracy theories, the pain of witnessing a massive campaign to debunk medical science runs deep.

When COVID-19 hit and began devastating millions of lives, misinformation about the virus — whether to profit, politicize or divide — also hit. I felt alone, recognizing telltale signs of the same messaging that tore my family apart.

I have learned how to speak publicly about my mother, and missing her. But I have never spoken publicly about why my mother died. She died of colon cancer, after about four years of suffering. What most do not know is that my parents refused to seek professional medical care, or to find out the exact cause of her mysterious illness. They had already spent years immersed in the conspiracy theory and anti-vax side of the Internet.

My mother’s parents died of aggressive forms of cancer within three years of each other, both before age 60. My mother talked often about how much she missed them, what they missed by exiting her life early, and how she hated hospitals and chemotherapy. We were raised to fear doctors, to never entrust them with our lives.

>>>Read: Mistrust and Misinformation Hold Back Black Vaccination Rates

So when she began to suffer from strange symptoms around the time I was 9, my parents ventured deeper down their pseudoscience rabbit hole. Alex Jones’s voice echoed around the house. They ordered strange snake oil gadgets, amassed a massive collection of vitamins and designed a complicated herbal regimen for my mother.

None of this included a visit to any doctor, beyond seeking disability benefits. My parents would not submit to tests investigating her condition, so convinced were they that she had a mysterious disease that doctors would deny. They refused to breathe the word cancer, or ever consider that this was the real enemy we were blindly fighting.

She died without stepping foot into an oncology center, without considering if radiation or medication would ever be a resort for survival. She never said she wished she had visited a doctor to find other ways to battle for life, even as she suffered at the end.

I was 13 when she died. She missed my high school graduation. She missed my college years and all the struggle that came with them. She missed my engagement and marriage to my long-term partner. I will never grow old with the benefit of her wisdom and love.

>>>Read: Disinformation Spreads Like a Disease, Expert Says

Years later, I watch as many others’ parents and relatives refuse medical treatment or turn to “alternative” sources because their beliefs about medicine or “freedom” are louder than the voices of loved ones begging them to stay healthy. I have continued battling family over masks and PCR tests myself. The old scars resurface.

Who’s to blame? In this pandemic, many of the same snake oil entrepreneurs who profit from polluting the minds of people like my parents have been enabled and platformed. Those of us who grew up being told that online blogs contained “truth,” and those whose families turned away from rigorously researched medicine during COVID, may be part of a club we didn’t want to belong to.

>>>Read: I Faced Down Fear and Misinformation to Get Vaccinated

I cannot imagine how many have confronted this feeling of utter helplessness, trying to convince a relative to see a doctor, get tested, get vaccinated. How many deaths could have been prevented if we had taken dangerous medical misinformation seriously sooner? How many families have been destroyed by the campaign to gaslight millions and discredit our health professionals, who dedicate careers to saving lives?

If there are others who know this unspeakable sorrow, I want to know them. If I can do anything with my life, I hope it’s to examine crises of truth versus fiction, or somehow prevent the loss of any more lives. At the least, I hope to comfort those feeling helpless to save a loved one, to know they are not alone.

This story originally appeared in Chico Sol, where Natalie Hanson is a contributing writer covering COVID misinformation, among other topics.

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