Be wary and wise in dealing with healthcare, but don’t let mistrust get you killed

Physicians, nurses, medical researchers, and other healthcare and life-sciences professionals are not saints. As human as anyone else, they individually and the arenas in which they work can be riddled with biases that range from racial microaggressions to outright bigotry. Medical science itself is frequently skewed by racism, as well as other factors like sexism or greed.

So, trusting blindly in what medical and healthcare professionals say and assuming that they know what is right for everyone all the time would be foolish. At the same time, though, on the whole they know better than the rest of us many times in the clinic (and medical science has brought us way more successes than failures on the market) and wariness should not be allowed to trump common sense—not even among those of us who historically have most been let down by the medical and scientific world.

And while this post is aimed most squarely at my fellow Black people, particularly those who are avoiding the COVID vaccines, I think there is value for non-Black readers as well in the words I’m about to share. And it begins with a very personal (and slightly long) story that has nothing to do with infectious disease at all…

In early 2003, my beloved mother developed a horrific cough—a cough so bone-wracking that at times she would have to cut our almost nightly calls short so that she could catch her breath. After weeks of coughing and after much nagging from my father and myself, Ma finally went to the doctor. She was diagnosed with bronchitis and sent home with some medicine and the admonishment that perhaps it was time to quit her almost lifetime smoking habit. 

My mother made a good effort at quitting smoking—it wasn’t easy, though. After all, she had started smoking a corn cob pipe at 11 years old and somewhere along the way had gravitated to Kool cigarettes and then Newport 100s and for most of my life, it was rare to not see my mother with a cigarette in hand. Mom started smoking back in the 1960s, when it was a different world and, well, she became addicted to the menthol cigarettes that we now know have been rather intentionally and heavily marketed to Black folks. 

Despite cutting back significantly and taking her meds, the cough never went away; instead, she started coughing up blood. Again, she went to the doctor and was told it was bronchitis. It was on one of our nightly talks that Ma revealed to me that she had started coughing up blood and my blood ran cold. 

I am not a healthcare expert, but at the time I was married to a medical and healthcare journalist and I had done my undergraduate work in racial health disparities. So I knew enough to know that a 49-year-old Black woman who was hypertensive and a lifelong smoker coughing up blood probably was something more than bronchitis. 

It was at that point that I was adamant that she needed a second opinion because coughing up blood with her history indicated probable lung cancer. Sadly, I would turn out to be right, but it would be a good month or more before it would be confirmed that Ma did indeed have lung cancer. 

I will never forget the call. Ma always had a standing Friday night date with the girls, but instead on a Friday night in August 2003 the phone rang and it was my Mom, and I heard something I had never heard in her voice, as she told me she did indeed have cancer. The doctor didn’t even bother to tell my mother what stage she was at, but she was told that she would need chemo, radiation, and lung surgery—and it would need to start in the next several weeks. 

Fast forward to September of that year: My younger brother who had just graduated from college was heading to Toronto for graduate school, and mom was starting treatment. So I flew back to Chicago to be with her and my Dad. I was with her when her hair started falling out so much that she asked me to cut it all off. I was just 31. 

In early November, her medical team felt she was ready for surgery. One lobe was removed and after several weeks of recovery, she was cleared to resume life, but they would monitor her. The prognosis was decent, or at least that was what we were told. 

Then Christmas Eve that same year, I was home in Maine preparing Christmas dinner and tried calling my parents. But no one answered. Instead, in the middle of Christmas day, I received a call from my Dad. He had rushed Mom to the hospital after she complained of a several-day headache, and she was being assessed. The lung cancer had metastasized to her brain. 

Instead of a joyful holiday season, I made preparations to go home to Chicago again to discover that was a walnut-sized tumor in my mother’s head. Without immediate action, she could be dead in weeks. 

Dad and I sprung to action when I hit the ground, advocating fiercely on Mom’s behalf. I did as much research as possible on providers and such, which is how we met Dr. Bovis, a neurosurgeon. He was the first healthcare provider to be honest with us—Mom was in bad shape. No shit, man! How did she just go from being cleared to return to work to not even a month later having a sizable tumor in her head? 

Dr. Bovis was honest enough to tell us that he and his team could operate on Mom but in his opinion we were buying months, not years. There was also a chance we could lose Mom on the operating table. 

My mother’s brain surgery took seven hours. It was January 2004 and my Dad and I sat side by side in the surgical ICU waiting room, leaving only for bathroom breaks and lunch. It was the longest day of my life. Ma survived the surgery but there had been complications. The last time I saw my mother alive, she was in ICU and barely responsive. She would live approximately another seven more weeks, never regaining her full faculties. On one of our last calls, she was so weak that she couldn’t say my name, but she whispered “daughter.” Her last words were to my father and were a strained and whispered set of instructions on taking care of her babies. My mother died less than a week after turning 50. 

I know that’s a lot, but sharing this personal pain is important because we would learn that ultimately medical malfeasance played a large role in my mother’s death—certainly in hastening it. While that specific part of the story is one for another day, it is important to note that of all the healthcare providers who were a part of my mother’s last eight months, only one had played straight with us. 

For years my mother’s death haunted me as I wondered: If she had been a white woman, would she have had more time? Would her health concerns have been taken seriously the first time? 

As a result of my mother’s poor treatment, decline and death, my brother and I were fierce advocates when my Dad started experiencing health issues over a decade later. I pissed off many doctors in his last years and once had to use social media to “bully” a facility to do right by my Dad. 

As I have gotten older, I have had my own issues with the medical community. The long and the short being that as a middle-aged Black woman, I have seen too many loved ones die early of illnesses that, had they been white, probably would not have killed them as quickly as they did.

My mistrust of medical folks is real—and numerous studies back me up that racial inequitities run deep in medical and medical research—but that doesn’t mean I reject medicine or avoid doctors. I’m just a lot more aware and conscious and vocal.

Which brings me to the current moment and this global pandemic we are suffering with COVID.

More than a year ago, we were dreaming that perhaps a vaccine might be our exit strategy out of this nightmare. But fast forward to 2021 and the vaccines are here, yet a sizable number of people are adamantly opposed to being vaccinated. No doubt to some of us it feels like the vaccines were rushed and surely something rushed might be problematic. Throw in wild internet conspiracies about the vaccine and suddenly for many people there are simply “too many unanswered questions” to take a chance on the vaccine. It certainly didn’t help that the approach by the CDC and much of the American leadership’s to dealing with this pandemic has felt like amateur hour. 

But here’s where it pays to have a desire to know what’s really what and do some smart reading, not to rely on the most paranoid sources of information and websites with clear agendas that feed our fears. What we need to understand is that the mRNA vaccines that seem so rushed aren’t as rushed as we think. The technology that made it possible to fast-track the vaccines wasn’t whipped up fast and furiously—scientists such as Katalin Karickó have been slogging away on mRNA technology for numerous years. In Dr. Karickó’s case, almost the entirety of her career.

In many ways, Dr. Karickó is one of the world’s greatest unsung heroes. She was convinced that mRNA could do a lot of good, even when others weren’t, so much so that she never made more than $60,000 a year as she committed herself to that research path. She’s often had to rely on the generosity of more esteemed scientists for use of their labs since she couldn’t even get her own fully funded operation. But she persevered, thankfully for all of us. 

Long story short, the vaccines weren’t just cooked up out back of the CDC like Walt White making meth in the trailer. 

Now that I’ve addressed the general worry, let me get to the racial one: For Black folks in particular, we have a lot of reasons to be suspicious of the medical community. Stories like my mother’s are way too common in our communities. We have seen too many loved ones die early of illnesses that our white counterparts have survived far longer or beaten entirely. We have had too many of our concerns dismissed and we have seen that even in the case of high-profile Black folks (Serena Williams being a notable example recently), wealth, notoriety and celebrity don’t protect us from the racial biases built into the system. 

Of course many of us by know how the men in the Tuskegee Syphilis Study were lied to and were intentionally left untreated and we know that Henrietta Lacks’ cells were taken and used for research and profit without her or her family’s consent and without compensation. 

Which means that aside from outright paranoia about the vaccines from conspiracy theorists who think there are tracking chips in them or something more nefarious, there are some valid reasons for Black people to have some mistrust. We’ve been readily and greedily used as guinea pigs before even as the medical and scientific worlds ignored our actual needs.

But this isn’t something targeted as us specifically as Black people, except insofar as the healthcare and public policy are trying to get vaccination rates among non-whites higher since they have lagged. The professionals are overwhelmingly telling all of us we need the vaccine.

Fear and mistrust of the medical and scientific community can be valid for us as Black people but, at the same time, it is dangerous to just turn our back on medicine.  Dangerous to ourselves and our loved ones. 

Since the beginning of the pandemic, COVID has disproportionately affected our communities. Too many Black lives have been cut short by COVID or been irreparably damaged. A large part of that is the way that healthcare systems don’t often support Black communities to begin with. Add in the way that many Black people were in jobs and situations that made them more likely than many to be exposed to the virus and at risk, and it’s no surprise we’re being hit harder.

But it doesn’t take much effort to do the research and take stock and use common sense. Yes, there are reluctant white people with regard to the vaccines but most of them are people who believe their extremist right-wing politicians over scientists on just about everything, which isn’t a ringing endorsement. Even though the process in this case was accelerated for these specific vaccines because of a raging disease, there is a lot of good research for years to back up its safety and value.

Ignoring that in favor of prayer alone or some sort of special diet or just doing nothing at all isn’t wise. Doing research and advocating for yourself with medical professionals is good; flatly denying science because of your uninformed gut feeling is not.

COVID doesn’t care if you are a clean-living vegan with a solid immune system or anything like that. COVID doesn’t care if you erroneously believe it’s no worse than the flu. COVID doesn’t care if you think masks or sheltering in place suck. COVID is an equal-opportunity destroyer—and it has particularly delighted in ravaging Black and Latino communities where proper healthcare has been lacking for people. And with the latest variant, Delta, this virus has leveled up.  Now is the time to pay attention to the science and other good advice, and not pretend that we know better.

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1 thought on “Be wary and wise in dealing with healthcare, but don’t let mistrust get you killed”

  1. Mulling over your question, Shay. “my mother’s death haunted me as I wondered: If she had been a white woman, would she have had more time? Would her health concerns have been taken seriously the first time? ” Maybe not. While the fact of whiteness does get you faster into the gate. Many other variables are involved here, however, as regards racism, not even your socioeconomic status gives you protection from the medical profession. As those studies coming out of Johns Hopkins Hospital revealed, upper middle class professional black males will be given poorer treatment than white males in the ER/ ED setting- regardless of any other variable. In my own white family and our females, I witnessed the poor medical decisions made by the health care providers, in their treatment of my Maine-born mother. Her osteoporosis-linked spinal cord fractures were treated as osteoarthritis for six months of excruciating pain until she fell off her bed and it was all downhill from that point. I am convinced that being the determined woman that she was, she had the final say, by willing herself to death. And my 7-year-old, white niece was diagnosed and died on the same day from Type I Diabetes, because her pediatrician had passed off her increasing thirst and weight loss as “anxiety”. And of course to be black, female, and elderly is a risk factor, in itself, in any health care setting.

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