Chapter 4 - The Subtlety of Skin Tone Bias and Racism in Access to Quality Care

Summary

As a result of the cumulative effects of the illness and noticeable weight loss, my appearance changed in yet another way. Whereas my complexion had previously been “light,” it was now somewhere closer to a medium, darker brown color. I was frustrated when I first noticed this because no one, not even Dr. S., the African American physician who currently treats me, could tell me that this was a direct result of amyloidosis or multiple myeloma, or that it was a direct result of kidney failure, or that it was some kind of outcome resulting from the cumulative effects of these maladies. Even now, some 20 months into the diagnosis, I continue to struggle with a true understanding of the effects on my complexion. I regularly grapple with any number of unanswerable questions. For example, will my skin tone continue to get darker with additional treatment? Alternatively, will sufficient treatment reverse these effects? Will my skin tone return to the shade it once was?

For me, as an African American woman in a racialized society like the United States, the matter of skin color (i.e., complexion) is very real. While I was aware of my shifting skin tone and noticed it most times when I looked in the mirror, I did not become sensitive to the change until greeting my mother at the airport after not having seen her for close to a year. She actually gasped and stopped in her tracks as she approached me, immediately questioning whether something was wrong. My mother, who has always had a medium brown skin tone, immediately sensed something was off given the change in my skin tone.

This was nearly a year before I would be diagnosed with amyloidosis/multiple myeloma. Unbeknownst to me, the disease was progressing largely undetectably. Whereas others who saw me daily did not notice the change in my skin tone, my mother, who lives outside of the United States and who had not seen me in months, noticed the change right away. I was not terribly alarmed, but I did become concerned.