The Being Guide

#6 | Demystifying mysterious illnesses | Sarah Ramey


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*Trigger warning* this episode contains conversations about medical trauma and medical gaslighting which may be triggering to some listeners. 

Joining me today from Washington DC is writer and musician, Sarah Ramey.

Ramey is the author behind The Lady's Handbook for Her Mysterious Illness, her darkly funny 2020 memoir about her decades-long battle with an invisible illness.

She also goes by the name of Wolf Larsen, her musical alias.

At the age of 21, Sarah started experiencing mysterious symptoms following a botched medical procedure. Debilitating pain, incapacitating exhaustion and brain fog were just a few of the symptoms that dominated her existence from that point on.

Her pursuit of a diagnosis led her to seek the help of over 150 doctors and specialists, the majority of whom could not find a cause and dismissed her condition as psychological, suggesting that it was all in her head and prescribing a cocktail of antibiotics and anti-depressants.

“It became clear that mine was not a psychological condition." Said Ramey, "It was a problem in the psyche of the doctors—the programmed assumptions, unconscious bias, prejudice against this type of patient, particularly against women.”

After years of mistreatment and prolonged suffering, made worse by the incessant gas lighting that accompanied her search for a diagnosis, Sarah had a breakthrough in 2012 when a female physician took her case seriously. Soon after, Ramey discovered functional medicine and found a doctor who gave her a long-awaited diagnosis of chronic fatigue syndrome, complex regional pain syndrome and POTS.

Although shocking, Sarah learnt that her experience was not unique as she uncovered a whole community of people who had experienced the same mistreatment at the hands of those who they placed most trust in. This was a both tragic and unifying revelation, and one which galvanised her into creating a community of women with mysterious illnesses, or WOMIs as she calls them.

Sarah went on to speak to hundreds of WOMIs, and began to piece together stories, research and conversations, all of which have contributed to the masterpiece that is, 'The Lady’s Handbook for her Mysterious Illness".

Released in 2020, The lady’s handbook is Sarah’s refreshingly honest account of these events. Her humour, sincerity and tenacity translate into a read that had me laughing, crying and cringing simultaneously. It delivers hope, without sugar coating and has done the world a service by bringing illnesses that are often accompanied by air quotations into the spotlight.  

Sarah is also a song writer and musician who goes by the name of Wolf Larsen, her 2011 album ‘quiet at the kitchen door’ features a series of haunting, poetic vocals accompanied by soulful strings.

Today we’ll be discussing the world of mysterious illnesses, unpacking why this realm is still so elusive and highlighting the importance of patient self-advocacy when seeking a diagnosis for lesser understood conditions.

https://www.sarahmarieramey.com/

https://www.wolflarsenmusic.com/

The Lady's Handbook for Her Mysterious Illness: A Memoir: Ramey, Sarah: 9780307741943: Amazon.com: Books

@sarahmarieramey

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The Being GuideBy Charlotte Horn