Published: 20/01/2020

How bias and a lack of access to healthcare impacts EDS patients of African descent

For years, I was told by my doctors that I was healthy, and I certainly tried to be. I exercised regularly, ate a balanced diet, didn’t smoke, and only drank occasionally. However despite all this, I didn’t feel healthy. For five years, I had been experiencing migraines, weight loss, nerve pain, chronic pain, loss of appetite, fatigue, hair loss, gastrointestinal, urological and autonomic dysfunction. Yet despite countless of medical visits, no one could tell me what was wrong.  

In fact, not only couldn’t anyone tell me what was wrong, but many of my doctors were dismissive of my complaints.  At first, they would try to help, but once they couldn’t figure out what was wrong, they became less inclined to treat me. Some implied that my pain was not what I claimed, while others were flat out dismissive of my health complaints. In fact, I remember one nurse cursing at me out of frustration over my requests while I was receiving treatment in the hospital for one of my conditions. My endless parade of doctor visits was yielding no results and it was taking take a toll on my mental health.

Then, I had a breakthrough.  Earlier this year, I was diagnosed with Ehlers-Danlos Syndrome or “EDS.” The National Institutes of Health describes EDS as “a group of disorders that affect connective tissues supporting the skin, bones, blood vessels, and many other organs and tissues.” It’s essentially a disease that weakens the connective tissue in the body. Symptoms range from mildly loose joints to life-threatening complications. Virtually anything involving your connective tissue can be impacted by EDS. 

Dealing with EDS was going to be challenging enough, but that wasn’t the only thing that was bothering me.  On the one hand, I was relieved to know what was ailing me, but on the other hand, I felt robbed of years of proper treatment. Over the last five years, I visited over 40 doctors as well as health care practitioners and I have had what seems like dozens of doctor’s visits. Why did it take years for me to be diagnosed? Why didn’t my doctors believe me when I told them something was wrong?  

One reason may be the lack of awareness about EDS. Another reason may have to do with pain assessments. Many EDS sufferers become aware of their disorder because of the intense pain they begin to experience. However, some doctors are less likely to take pain complaints seriously when they come from African American patients.  During my search for answers, I learned that African-Americans are disproportionately less likely to receive proper treatment for pain than white Americans. According to the National Institutes of Health U.S. National Library of Medicine, physicians are more likely to underestimate the pain of black patients (47%) than nonblack patients (33.5%).  These statistics are also bolstered by a study published in the Proceedings of the National Academy of Sciences.  In this study, researchers at the University of Virginia found that many future physicians harbored false beliefs about the biological differences between black and white patients.  They also found evidence of racial bias in pain assessments.  

This isn’t to suggest that most doctors are racist, but rather that many physicians (and future physicians) may have implicit biases against African American patients dealing with pain issues. If physicians aren’t treating pain complaints seriously, black EDS patients will continue to receive inadequate medical treatment in our health care system.  

This may also explain one of the obstacles to better treatment in the black community, given that many members of the black community are distrustful of medical professionals.  This may have to do with the long and painful history of medical professionals exploiting black bodies. It dates back centuries to when slavery didn’t just mean free labor, but also a license for medical experimentation. As noted in a Washington Post article chronicling the history of racism in American medicine, “…black women were considered appropriate subjects for such experiments based on the widespread belief that black people experienced less pain than white people.” There are also examples post-slavery, of medical professionals treating black Americans unethically. For instance, in the 1930’s, medical professionals told African American syphilis patients that they were being given syphilis treatment. In truth, they didn’t receive any treatment so that physicians could examine what happens when syphilis goes untreated.  This is known as the Tuskegee experiment.  

Incidents such as these have made many members of the black community distrustful of healthcare professionals, and explains why some black Americans are less likely to trust doctors and hospitals than non-black Americans. (See Black Americans Don’t Trust Our Healthcare System – Here’s Why). It may also explain why some black patients prefer black physicians. Researchers at Montana State University analyzed the impact of matching black patients with black physicians and found that it resulted in better health outcomes for the patients.  The researchers concluded that this could be due to better communication and trust between the patient and health care provider. 

However, while Montana State University’s findings are interesting, segregating our health care system isn’t the answer. The black community needs access to more healthcare professoinals, not less. For decades, there have been disturbing racial disparities when it comes to medical treatment for black Americans when compared to other ethnicities. African Americans are disproportionately more likely to experience chronic disease, suffer from heart disease, and live shorter lives.  What Montana State University’s results suggests to me, is that if we can begin to rebuild trust in our medical institutions, it will lead to better health outcomes.     

Prior to my diagnosis, I never considered that the challenges I faced were symptomatic of larger issues in U.S. healthcare system. It wasn’t until after my diagnosis, that I became aware of how often EDS is underdiagnosed in the black community. In order to reduce disparities in EDS treatment, physicians need better training on how to detect it.  We also have to recognize the role discrimination and inherent bias have played in deteriorating trust between physicians and black patients. Once we’ve done this, we can begin to work on breaking the barriers to proper healthcare and eliminate disparities in the treatment of black EDS patients, like me.  

Article by Nia Hamm.

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