The very real world impact of misinformation
This post carries a content warning. I’m going to write about the very real world impact of misinformation with a very real example involving cancer and it does not have a happy ending. Please choose to read on based on your comfort in reading about a difficult topic.
Misinformation has been an issue for the lifespan of modern humanity. Mostly constrained to the political and military realms, the act of relaying a set of information that is incorrect to confuse others is an activity deployed with somewhat regularity. What changed in very recent years, and let’s really laser in on the 2015 to today timeline, is that the target and impact has been the mass population via the news media and social media platforms.
I’m not going to belabor the point that this has had a wide ranging impact around the world, and acutely felt in the US. That is clear and obvious. Instead, let’s talk about a real scenario to show how this plays out to those susceptible to this influence.
Note: While I am going to write about my own real world scenario, I do not in any way want to devalue all the other ways that this has impacted people, from not getting covid vaccinations to taking medications designed for horses to funding grifters.
OK, so where to begin … ah yes, the family. This story is about a couple aged in their mid 30s with 2 young children (both under 5). I am not related to these people by blood, and the names I use are fake. But the rest, it’s all too real.
So Hector and Helen with their 2 young kids live a fairly normal life, they have jobs, did a little travel before settling down and buying a house. Probably the most normal and boring setup you could write. But what is not quite normal is that Helen formed some interesting beliefs when it came time to have children, and specifically, vaccinations. Like what I suspect most parents go through, all of a sudden you’re making decisions for these offspring, and one of those is vaccinations. Despite being fully vaccinated themselves, they started reading about childhood vaccinations and fell deep down the conspiracy rabbit hole and long story short the children are not vaccinated. For anything. Now as someone who somehow missed the chickenpox in childhood and ended up getting it at age 32 (which is a horrible and excruciatingly painful experience) this worries me greatly. Never mind the practical realities of what this means for things like school.
In 2020 when Covid hit, with this already surface level rabbit hole exploration complete, they went completely down deep into that hole and became avid fans of Fox News and all the conspiracy theories and misinformation about the Covid vaccinations … we were excited to get ours (and more than relieved) and upon telling Hector and Helen were met with a barrage of garbage about the vaccines being made of dead babies and full of dangerous materials that were bad for our body. So, add “not vaccinated for Covid” to the list of things that Hector, Helen and the 2 kids are not protected against.
And then in late 2020, the dreaded C word entered the story. No not that C word, the other one, Cancer. Helen had a lump in her breast that was assessed to be malignant, and a series of recommendations were made on how to approach this for the best outcome and longest lifespan. Now, Cancer is a terrible thing, so much is unknown, and of course no guarantees can be made. But, breast cancer is one area of oncology that has had a lot of research and progress made, and outlooks are generally positive and many years can be added to a lifespan.
Sadly, this is the point in the story that all the misinformation hits and we begin a rapid descent into sad outcomes.
Helen initially refused all treatment, and opted to go with “alternative” treatments that involved ozone, vitamins, diet and paying a known scam artist many thousands of dollars. I want to also at this point acknowledge that we do not know that these treatments have no effect, diet in particular can have a significant positive influence. But ozone treatments are garbage, and expecting vitamins and salt baths to impact cancer is just not a good headspace to be in. But here we are. They started a fund raiser to ask for money to pay for this scam artist, we tried in vain to alter courses but hit the point where a permanent rift would result so we backed away. We also did not contribute to this funding, as I refuse to throw money away to a scam artist. I did offer to assist with science backed treatments.
Eventually Helen was convinced to have surgery and had a double mastectomy. But she refused to have the associated treatment (radiation and chemo) and relied on the above alternatives.
Six months later, Helen has a half dozen brain tumors, ovarian cancer, a tumor on her adrenal gland and is in hospital. Hector speaks of continued faith in the alternative treatments, espousing how the problem is not the tumors and cancer but the swelling that is causing the pain, and that he hopes to bring Helen home this afternoon.
The reality: Helen will be moved to a hospice this week, with at best weeks to live.
This is why I fight misinformation. This is why I refuse to stay on Twitter with the way Elmo is running it. This is why we must fight this battle. People are and will continue to die. And the perpetrators of all of this, are grifters who make money off spinning these lies.
Would things have been different if Helen had taken all the medical advice? We will never know. But I have to think that at worst she would have had an extended life, whether that be 5 years, 10, 15 … she leaves behind 2 young kids that will probably not remember their mum. As a parent, I cannot imagine doing anything except fighting like hell and doing everything I could to still be here, it would take me kicking and screaming until the last minute. Sure, do the alternative treatments, hell I would try anything too. But take ALL the treatments. Do everything you can.
The Misinformation Age leave behind a trail of death and destruction. I will fight this until I die.