“HCPs would tell me to ‘calm down’ — that I was being too anxious or imagining the worst.” mguptaphd's pain is invisible, but she’s not — advocating for yourself is an important part of living with chronic illness.
— a label that can carry heavy stigma and discrimination for women whose symptoms do not fit a textbook explanation. I knew we had not ruled out all explanations for my symptoms, however. And after two years of pushing for more testing and referrals, my HCPs finally agreed there was evidence that I have immune-mediated small fiber polyneuropathy — a condition for which early detection and treatment are key.
I was lucky to be living in Washington, D.C., where I could qualify for expanded Medicaid coverage when I became too disabled to work full-time. Being a Medicaid recipient, however, added another layer of bias, as HCPs would question my work ethic or suggest I was drug-seeking or exaggerating my pain to get disability benefits that were so small I couldn’t even live on them.
Every day, I’m living what I spent years studying, and I’m determined to use my knowledge to help improve outcomes for stigmatized and marginalized communities in healthcare. I know that women of color are more likely to suffer from implicit bias in the healthcare system because there isn’t as much research or understanding about the causes or symptoms of chronic disease in our communities.
I hope that sharing stories like mine can increase awareness of how common autoimmune and neurological diseases are in young women and people of color in general, and improve access to testing and treatment at earlier stages, before the diseases become permanently disabling. Finally, I hope that by sharing my story, I can help other women of color living with chronic pain feel validated in their experiences, as well as encourage more HCPs to engage in open dialogue with their patients about fighting biases and barriers in pain care.
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