- May 13, 2020
TW/CW: this episode includes a graphic description of vaginal surgery.
Sarah Ramey (also known by her musical pseudonym Wolf Larsen) is a writer and musician living in Washington, DC. She is a graduate of Bowdoin College, received an MFA in creative nonfiction writing from Columbia University in 2007, and worked on President Obama’s 2008 campaign. A recipient of the 2018 Whiting Creative Nonfiction Writing Grant, she is also the author of the new memoir The Lady’s Handbook For Her Mysterious Illness, a searingly funny and achingly candid retelling of her journey from misdiagnosis and disconnection from her body through 15 years of mysterious illness that she was consistently told was all in her head. And guess what? It wasn’t. The realization that women are so often brushed aside as hysterical, given false psychological diagnoses when their bodies are in crisis, and experiencing exacerbated symptoms because of their lack of acknowledgement led her down a rabbit hole in which she discovered her kin: WOMIs (Women with Mysterious Illness), who are “exhausted, gluten-free, and likely in possession of at least one autoimmune disease. [They are] allergic to…(everything), aching from tip to toe, digestively impaired, and on uneasy terms with [their] reproductive system[s]. [They are] addled, embarrassed, ashamed, and inflamed.” And almost all living with neuro-endocrine-immune issues. Now diagnosed with ME/CFS, and chronically comorbid conditions CRPS (constant colovaginal pain), POTS, and MCS (multiple chemical sensitivity), she still lives with chronic symptoms and is on a mission to turn her experience into something from which we can learn and improve. A cautionary tale to both fellow WOMIs and the medical establishment, Sarah challenges us — all — to do better.
Key links mentioned in this episode:
Tune in as Sarah shares:
- that her main diagnosis is ME/CFS, and she experienced an abrupt onset during her senior year of college, in 2003
- her first symptom: consistent UTIs that couldn’t be eradicated with antibiotics
- her first treatment: a urethral dilation gone wrong, which caused her to develop sepsis
- that these experiences were the beginning of years of pelvic pain
- that as tests began to come back negative, she was immediately referred to psychiatric counseling
- the disparity in funding between AIDS, cancer, and ME/CFS research
- a discussion of medical bias in research and practice
- that she got her CRPS diagnosis 10 years into her medical journey
- that her CRPS presented much like vulvodynia, but the Mayo Clinic finally gave her the correct diagnosis
- that her CRPS has been connected to a neuroma inside her vagina — and for the longest time, she could barely even sit down or wear pants
- that for years, she was denied tests because they would have required her to be under general anesthesia due to her pain — and these tests ultimately revealed the root cause of so much of that pain
- that she endured multiple medical traumas, from biopsies without anesthesia and incorrect device installment, to constant pain and disbelief
- the role of stress in chronic illness: and why so many chronic illnesses are modern problems
- that mistreating patients actively contributes to the worsening of disease
- how her relationship with her parents (who are both doctors) evolved over the course of her illness
- that she was early to research the microbiome and gut health, and was repudiated by friends, family, and doctors
- aspects of the feminine that influence medical bias
- that “pathological niceness” is a personal trait she has modified in order to better serve herself and others
- why the doctor-patient dynamic is one of imbalanced power
- how she practices mindfulness around her “spoons”
- that she’s recently gotten an ileostomy in order to manage her digestive symptoms
- the importance of functional medicine in her health journey and the future of medicine
- how she envisions the future of medicine and patient-hood
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