122: Rhisa Parera: A WOC VS The System — And Lyme

Uninvisible Pod with Lauren Freedman

In the last in our 2021 series on Lyme disease, we are joined by the first WOC to discuss the subject: Rhisa Marie Parera. Though she began experiencing symptoms from a young age, Rhisa grew up as an active young woman in Staten Island, NY, and got heavily involved in the salsa dancing scene and modeling from her late teens into her early twenties. At the age of 19, her health took a serious downward turn; and ten years later, aged 29, she had deteriorated to the point at which she was no longer able to participate in activities that had once brought her joy and connection to her heritage. According to the CDC standard Western blot test, she was positive for Lyme disease…but it took a decade to get there. Given her experience of the medical system, she took it upon herself from the point of diagnosis to get her life back, and has been working with a team of integrative practitioners to do just that. She is the author of the Negra Con Lyme blog — a chronicle of her life as an Afro-Latina with chronic Lyme; and will soon be launching a clothing line for Lymies. She has found strength in community, and hosts a BIPOC Lyme support group that meets weekly via Zoom, Sundays at 3pm EST.

Tune in as Rhisa shares:

• her varied symptoms: a rocking sensation similar to vertigo; migraines; a pulsing sensation in the back of her skull; loss of vision; GI issues; numbness and pain in limbs and joints; seizures; and much more
• that she also has skeeter syndrome: extreme sensitivity to mosquito bites
• that she presumes she was infected by a mosquito when visiting her family in Puerto Rico
• that she has also tested positive for Dengue fever — a viral infection also carried by mosquitoes, largely in the Caribbean
• that she didn’t get her Lyme diagnosis until 2019 — after going through at least 50 doctors on the road to diagnosis
• that she was gaslit over and over by various practitioners, frequently prescribed antidepressants, and often sent for psychiatric help as a final solution
• why she believes fibromyalgia isn’t a true diagnosis
• that when she was diagnosed with chronic Lyme, her doctor prescribed two weeks of antibiotics and sent her on her way
• that she’s learned the most about Lyme from her online community
• how her illness has affected her relationships
• how her privilege has enabled her to access treatment
• how Lyme has also put her in early menopause, and affected her fertility — with PCOS
• her specific experience of racism in the Latinx community
• why diagnoses of Lyme disease are so much more rare in communities of color

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