Episode #83: Sarah Ramey
Sarah Ramey is a writer and musician (known as Wolf Larsen) living in Washington, DC. She graduated from Bowdoin College in 2003, received an MFA in creative nonfiction writing from Columbia in 2007, and worked on President Obama’s 2008 campaign. She is also the recipient of a 2018 Whiting grant for creative nonfiction.
Sarah Ramey has a term for people like her. She calls herself a WOMI, or a “woman with a mysterious illness.” As it turns out, Sarah has a few mysterious illnesses, including chronic fatigue syndrome, postural orthostatic tachycardia syndrome (POTS), and complex regional pain syndrome. On today’s episode, Sarah tells me about the events that set her life as a WOMI in motion: the procedure to treat her UTIs that was supposed to be routine but was anything but, and her subsequent search for answers for her very real symptoms. We talk about what it was like for Sarah to be told over and over that her problems were psychosomatic, and why she’s so adamant that patients with mysterious illnesses be treated differently in the future. Finally, we discuss her recently published book, The Lady’s Handbook for Her Mysterious Illness. It’s also important to know that in addition to being a writer, Sarah is also a musician known as Wolf Larsen--and she talks about how learning to play the guitar, especially when she was stuck inside because of her symptoms, helped her develop an important part of herself.
“The illnesses themselves are very bad, but it’s the experience of being told that you don’t have that illness or that you’re making it up or that you’re a liar, over and over again, that is—I think—by far the most damaging part of the whole thing.”
Here are some of the things Sarah and I chatted about:
The UTIs she experienced in college that led to having a procedure called a urethral dilation
How things went wrong, but why her mentality continued to be “everything is going to be fine”
Her trust of the medical system--her parents were doctors and she had always had great care
How her experience as a college student changed very drastically after she returned to school
The specialists who took her seriously at first, and what changed when her tests came back
When the word “psychosomatic” entered the conversation, the complexity of what she felt
The reinforcing narrative that started to take hold, and why it kept being reinforced so strongly
The psychiatric side effects she had from Paxil, and how they seemed to confirm her diagnosis
The concept of a “woman with a mysterious illness,” and the diagnoses that WOMIs may have
Why, despite her asking over and over, doctors did not want to do a transvaginal sonogram
Discovering, thanks to this sonogram, that she had been injured during her original procedure
How she manages her pain, and--while it’s still bad--she tries to have positive inputs in her life
The doctors who have gained her trust, and why she’s so grateful for their care in particular
Her book, The Lady’s Handbook for Her Mysterious Illness, and why she decided to write it
Why her book is for doctors as much as it is for patients, and the kind of response she’s had
Becoming a musician, and how music functions as an important emotional outlet for her
“You need the world around you not to coddle you, but to just have some sort of basic affirmation that your reality is a shared reality with other people.”
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