Betrayal of Trust
Women and underserved people avoid medical care, and that's getting worse. Why?
Some people can’t afford medical care. According to an April 2021 study, one in five U.S. residents can’t afford healthcare at all, and 66% fear that if they fall ill, they won’t be able to pay for care.
For the past 18 months, we have heard constant messages regarding a deadly worldwide pandemic. Wear masks, wear double masks, get vaccinated, you can still get COVID after you’ve gotten both vaccine doses. The vaccine doesn’t work for long, you will need a booster. If you are vaccinated and get COVID-19 you will spread it to others more than the unvaccinated.
“The unvaccinated do not deserve medical treatment if they get COVID.”
“Children are dying by the thousands from COVID.”
So, it’s Tuesday after Labor Day weekend, pandemic unemployment benefits have expired, and the New York Times newsletter says:
Your chances of a "breakthrough" Delta COVID infection while vaccinated are 1 in 5,000
It's "even safer" in big cities - a 1 in 10,000 chance of infection for the vaccinated
Go back to work/school - it's safe
Sure, okay! Whatever you say!
I’ve struggled with a chronic illness since my late teens: irritable bowel syndrome (IBS). It was impossible to diagnose in the early 80s and was barely recognized as existing at all. Because the cramping pains were similar to menstrual pain, I was diagnosed with various illnesses (that I did not actually have) ranging from endometriosis and Crohn’s Disease to HIV/AIDs. Yes —that’s right. I was mistakenly diagnosed with AIDS. Not one, but two different physicians have told me wrongly that I would “never carry a child to term.”
Well, she is 29 years old, thanks Doc. This is the same guy that said “Childbirth may be painful.”
It feels like the COVID pandemic public information phenomenon is nothing but one long “Childbirth may be painful and you’ll never have children anyway” experience.
A 2014 national survey that draws upon 2008 information identified several reasons why a third of U.S. residents avoid going to the doctor and cost is not the highest reason on the list, which included:
Low trust in doctors
Emotional factors (worry, embarrassment)
Prior negative experiences with clinicians
When my grandmother was in her 80s, she had begun to develop some cataracts, but small moles on her eyelids were more troubling to her, causing dry and itchy eyes. I took her to an older, irascible optometrist at our local medical clinic. The doctor examined her for about 10 seconds then announced in a loud, brusque tone, “You’re just old. Nothing to be done.” Because my uncle the world-famous urologist was still alive, I called him and told him what this man had said and done.
My grandmother quickly received a new appointment with a younger, more helpful physician, new glasses, and a prescription for ointment that provided a little bit of help with her dry, itchy eyes.
We tell these personal stories, but at the same time, millions of people have experienced and continue to experience the same thing or far, far worse. Black women’s health concerns are routinely ignored. Any woman past menopause can probably forget about getting anything other than hormone replacement therapy, opioids, or steroids, for any age-related concerns. Our culture still blames health disparities among BIPOC and women or LGBTQ communities on individuals and individual failings rather than a failure of the healthcare system, from medical schools and clinical training to healthcare organizations and deep-seated, difficult-to-change habits, prejudices, and … just plain ignorance and callousness. Let’s not forget greed and insurance companies. And then there’s Big Pharma.
So since March 2020, we have heard nonstop conflicting information about COVID-19. As soon as people began to feel as though the virus may have been defeated, the Delta variant rose up. It’s impossible to find accurate local information from Google search: it directs to a New York Times-based dashboard. Yes, the “newspaper of record” is also the “health information of record”. You have to go to your local county health department or state health department to get accurate figures of positive tests, illness, hospitalization, and death. And are those true? How could any individual know? The person putting the data into the dashboard is just going based on the information they have. Is that information true? Who knows?
Have you shamed or cut off or accused a family member or friend of being evil, bad, wrong, and stupid because they had any opinion about this disease, their own safety, or the safety and health of others?
Welcome to the club, you are right in there with what …
They said about HIV/AIDS patients
They say about people with alcoholism or other substance use disorders (SUDS)
They blame women with pain from fibromyalgia or endometriosis or PCOS
They blame people who are obese
They blame people with depression and anxiety
They used to say about parents of children with autism.
That's right: in the 1950s and 60s, even up into the 80s, mothers of children born on the autism spectrum were told their child's condition was their fault. It was called the "Frigid Mother Syndrome."
I do not know, nor do you, exactly how dangerous COVID-19 is. I do not know, nor do you, what the effects of the variety of vaccines are.
And the reality is, we live in a world where this statement is true not only about COVID-19, but also about the air we breathe, the food we put in our mouths, the environment we live in, and every other infectious disease, metabolic disorder, or behavioral health condition.
You want certainty and you’re in a system that prizes certainty, not only without cause, but prizes a type of certainty that reinforces attitudes and behaviors we all know intellectually are harmful: gender bias, race-based and ethnic bias, economic and social bias, sexual orientation bias.
It is September 7, 2021 and the New York Times newsletter this a.m. urges people to go back to work and school and not fear COVID-19 as long as they are vaccinated.
It all boils down to trust. A large percentage of people don’t seek traditional medical care because providers don’t listen to them, don’t care about them, don’t properly diagnose, and don’t properly treat them. They might not even be able to treat them because as much as some people protest organized religion and make fun of it with the “Flying Spaghetti Monster,” organized Western medicine is hardly Godlike, flawless and all-seeing/all-knowing.
I just read this passage in the excellent NYT bestselling book The Body Keeps the Score.
Okay, in the 1980s when the book’s author Bessel Van Der Kolk had begun to treat Vietnam Veteran and other PTSD patients, this was what his texts were saying. Notice how he realized quickly that incest was a lot more common than the text indicated—simply by treating patients for their presented situations, not telling them “it’s no problem you suffered incest at home growing up, and are you sure you’re telling the truth” and “besides, it’s good for you!” There are still clinicians out there who are sticking to these outdated and exploitive bits of information masquerading as behavioral health advice.
People like me who have been treated poorly by clinicians throughout our lives (maybe 40% good experiences, 60% bad) — now it comes to this massive public debate about COVID-19 and all you want to find out is “Will I get it? How do I keep from getting it and giving it to others? Is this vaccine effective, and which vaccine is better?” You can’t find coherent answers to these questions, all you can locate are political attacks and a genuine avalanche of information that conflicts and reverses itself almost daily.
COVID-19 is like all of these Western medical problems all wrapped up in one big, nasty package that turned family and friends upon each others’ throats. It cost millions of people their jobs and forced millions of people to close their businesses.
Now it’s time for everyone to go back to work so the official news is “we are all safe, get vaccinated, it’s no big deal.”
I still do not know the answers regarding COVID-19. I would love it if the vaccines were effective and would love it if the pandemic really is coming to a close.
But since “official sources” are promoting safety and lack of risk, I think it’s wise to question all of it since there’s a very long history and a lot of documentation that the patient’s best interest is not well-served by this “system” our culture has created.
I’m writing these newsletters to let people know they have to take responsibility for their own health first: nobody else can do it as well as we can ourselves. And the truth is—the people our culture tells us “care” in reality, don’t really care all that much and even if they care, don’t know all the answers or have all, or even most, of the tools required to live well and thrive.