Why I Stayed Away from the Doctor's Office and How Fibromyalgia Changed That

Episode 4: African American Distrust of the Medical Industry

I have had my run ins with the American Medical system. Certainly not as egregious as what

you are about to read. However, from having surgery performed by a suspected drunk doctor in North Carolina, to me being suspected of drug seeking behaviors when I asked for I higher dosage for sedation during an endoscopy in Minnesota, the treatment I have received from doctors has been, itself, suspect.

However, my experience in this go around with Healthcare and my fibromyalgia diagnosis has been notably different. My nurse practitioner has been with me all the way, doggedly seeking the answers to my pain. All of the specialists I have seen have been competent, compassionate and willing to listen. The therapists I have seen have been supportive and concerned. It has been the complete opposite of what I have come to expect of the American healthcare system. It could be that I am lucky. Or, it could be that healthcare has evolved.

I have always aimed to avoid western doctors and medicine as long as possible. I have preferred traditional treatments and native and indigenous solutions for my everyday supplemental and medicinal needs. For example, instead of buying very expensive probiotics for gut health, I prefer to ferment my own sauerkraut and beet kvass, both loaded with billions of natural probiotic strains. In fact, I have an entire (dormant) youtube channel devoted to it. Look, I am by no means an anti-vaxxer, however, my goal is to stay out of the doctors office and keep the pharmaceuticals on the drugstore shelves. But alas, I find myself knee-deep in different therapies, meeting neuroscience specialists, and assessing how analgesic and antidepressant medications work for me as I learn to navigate this sometimes debilitating disorder. Fibromyalgia is not something I can supplement my way out of; I need pain relief, and yes, I need western medicine's intervention.

Although, there is a plethora of issues I want to talk about in this blog, I think it is important to discuss an issue that I introduced on my "about me" page. This issue has impacted my relationship to the healthcare industry, in particular, my relationship with the American medical system as an African American woman.

Enslaved Women and Gynecological Experimentation

My mistrust of the medical industry is not unique, in fact this mistrust has a long and tortured history, especially for African American men and women. Experiments on African Americans is an historical truth in the Unites States. In the 19th Century enslaved African American women underwent gruesome and excruciating gynecological experiments at the hands of "pioneering" southern doctors. These horrors are detailed in Harriet Washington's sobering account of the medical mistreatment of African American's in her book "Medical Apartheid" where we learn that Marion Sims, the "father of American Gynecology", once lauded as the hero of women's health, was actually morally bankrupt as he performed horrific experimental vaginal surgeries on enslaved women without anesthesia:

"The surgeries [vaginal fistula closures] were terribly painful...Medical journals and professional word of mouth had detailed the inhalation of ether as anesthesia since the early 1840s, and Sims knew of this, but he flatly refused to administer anesthesia to the slave women and girls. He claimed that his procedures were, 'not painful enough to justify the trouble and risk attending the administration,' but this claim rings hallow when one learns that Sims always administered anesthesia when he performed the perfected surgery to repair the vaginas of white women...a few years later. Sims also cited the popular belief that blacks did not feel pain in the same way as whites. (65)".

These experimental surgeries, though pioneering in treatment of women's health disorders , were performed on enslaved victims who had no rights over their own bodies. No consent was necessary. No regard was given to the pain these women endured. Abhorrent occurances like these have left an indelible mark on the ancestral memories of African American people.

Tuskegee Syphilis Study

Yet another abuse of African American bodies was the Tuskegee Syphilis Study. This study was conducted by the United States Public Health Service, USPHS, beginning in 1932, originally called the “Tuskegee Study of Untreated Syphilis in the Negro Male”. This study was conducted before informed consent was the standard in research practices.

In this study, the participants were told they were receiving treatment for "bad blood", a local term used for anything related to sickness in the body - syphilis, fatigue and other ailments. As a participant, they would receive, "free medical exams, free meals, and burial insurance". They received no treatment. Of the 600 men in this study, 399 of them were afflicted with latent syphilis, or asymptomatic syphilis, and were left to suffer with the disease, even as they predictably became symptomatic, believing they were being treated. As early as 1943, penicillin, an effective treatment to cure syphilis was widely available, but it was not offered to these men. In fact, doctors in the area were instructed by the USPHS to give no treatment to these men if they showed up in their offices complaining of symptoms.

The aim of the study was to track its full progression from its latent stage to death. And die they did, unnecessarily, but not before undergoing the horrific calamity destined for a person with advanced stage syphilis including: blindness, hearing loss, meningitis, mental impairment, and stroke among other outcomes before its end. Untreated syphilis, with all its complications leads to a painful and early death. It wasn't until 1972, when the Associated Press broke the story about this study, that the US secretary of health appointed a panel to evaluate the studies impact and outcome. Mind you, this study of untreated disease, which began in 1932, with treatment that was readily available 10 years after the start of the study but denied to the participants , was only ended in 1972 after the AP broke the story. This was YEARS after medical ethics were adopted worldwide to prevent such horrors from happening. This panel advised an immediate stop to the study. The study was deemed medically unethical with unremarkable results as compared to the dangers it posed to the men involved who inevitably died as a consequence of participating in this research.

The HeLa Cells

And then there is the case of Henrietta Lacks who, in 1951 underwent radium treatment for cervical cancer. The doctors at John's Hopkins University collected her cervical cells without consent. These cells, named the "HeLa" cells for Henrietta's first two letters in her first and last name, were unlike any cancer cells the researchers had ever seen. These cells never died and actually doubled in number every 20-24 hours. Ms. Lacks died at the young age of 31, but her cells live on today. These cells, without the knowledge of the surviving family, had been used in numerous cancer studies and because the cells continue to live, using human participants is not necessary. Ms. Lack's HeLa cells not only continue to help solve cancer's mysteries, they also played a vital role in the development of the COVID 19 vaccine. However, again, her cells were preserved by Johns Hopkins University without her consent. Even after the Nuremberg code established and adopted in every Western nation in 1948 which forbade human experimentation without informed consent, the unethical use of Ms. Lacks' cells continued. John's Hopkins University offered little apology except:

"Though the collection and use of Henrietta Lacks’ cells in research was an acceptable and legal practice in the 1950s, such a practice would not happen today without the patient’s consent".

Insert SNARK: And to honor Henrietta Lacks and her incredible HeLa cells, the University erected a building in her name, created a YouTube video and acknowledged that they could have done better to gain informed consent from Ms. Lacks and her family.

Today, this would never happen, right? Or, so we hope. Read more about that HERE .Scroll to page 24: HIV experiments in third world settings.

These stories of medical abuses of African American bodies are etched into my memory and because of them, and my own experience, I am hesitant to seek medical

answers within the American healthcare industry. However, hesitant is the key word. Many African Americans express the same hesitancy in survey after survey. And this was the perspective I was coming from when my Nurse Practitioner and I began to search for answers for the all-over body pain I began to experience in July, 2022. I trust her and I have come to trust the medical professionals - the TEAM - that is working with me now to help me navigate the system as I discover what is possible with this African American body living with fibromyalgia.

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Karen Palmen, EdD is a veteran educator in Saint Paul, Mn. She teaches Dance and English at Saint Paul Central High School. She has an active TikTok page that features humorous, political, mental health, and educational content (kickin it with karen). And a a dormant YOUTUBE channel with the same name, featuring fermented foods and other cooking oddities.

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Sources:

Butanis, Benjamin. “The Legacy of Henrietta Lacks.” Johns Hopkins Medicine, Based in Baltimore, Maryland, 18 Feb. 2022, https://www.hopkinsmedicine.org/henriettalacks/.

JohnsHopkinsMedicine. “Henrietta Lacks | Her Impact and Our Outreach.” YouTube, YouTube, 28 Oct. 2016, https://www.youtube.com/watch?v=SPLSp7Tf3bw.

“Medical Apartheid Author Harriet Washington Details History of Racism in Medicine.” UMass Chan Medical School, 11 Feb. 2022, https://www.umassmed.edu/news/news-archives/2022/02/medical-apartheid-author-harriet-washington-details-history-of-racism-in-medicine/.

SITNFlash. “Vessels for Collective Progress: The Use of Hela Cells in COVID-19 Research.” Science in the News, 4 Sept. 2020, https://sitn.hms.harvard.edu/flash/2020/vessels-for-collective-progress-the-use-of-hela-cells-in-covid-19-research/.

“STD Facts - Syphilis.” Centers for Disease Control and Prevention, Centers for Disease Control and Prevention, 10 Feb. 2022, https://www.cdc.gov/std/syphilis/stdfact-syphilis.htm.

“Tuskegee Study - Timeline - Cdc - Os.” Centers for Disease Control and Prevention, Centers for Disease Control and Prevention, 5 Dec. 2022, https://www.cdc.gov/tuskegee/timeline.htm.

Untreated Syphilis in the Male Negro - Milbank Memorial Fund. https://www.milbank.org/wp-content/uploads/mq/volume-32/issue-03/32-3-Untreated-Syphilis-in-the-Male-Negro.pdf.

Washington, Harriet A. Medical Apartheid. Random House, 2019