081: Docu-series Trust Me, I’m Sick Illustrates Spoonie Life

Uninvisible Pod with Lauren Freedman

Trust Me I’m Sick is a docu-series produced in partnership with nonprofit Suffering the Silence that explores how chronic illness affects the everyday lives of five people living in Los Angeles, California. Ezra (18), Giuliani (29), Henriette (50), Matt (32), and Cassandra (28) share intimate stories about how lupus, HIV, and other conditions shape their relationships, careers and visions for the future. In this episode, Lauren sits down with creators and co-producers Sarah Stewart (living with SIBO), Erica Lupinacci (living with lupus), and one of the subjects of the doc, Henriette Ivanans-McIntyre, who has survived drug and alcohol addiction and had two kidney transplants due to unrelated glomerulonephritis (chronic inflammation of the kidneys). As two women living with chronic conditions themselves, Erica and Sarah realized that while diagnoses and life experiences may differ, feelings of being misunderstood, silenced, and dismissed are often shared across the chronic illness community as a whole. Frustrated with the lack of illness and disability representation in front of and behind the camera, the team was committed to employing and involving people with direct, lived experience with illness in all aspects of the series. Trust Me, I’m Sick was made by an entirely female crew, all of whom have personal experiences with chronic illness. It was crucial that it was made for the community, by the community. It was made while in the midst of a clinical trial, edited from infusion chairs in the hospital, and developed while wearing heating pads in bed. People living with chronic illness deserve to have their stories seen and heard, to have platforms to talk about the things so rarely discussed and so often stigmatized. And we’re here to talk about why.

Tune in as Erica, Sarah, and Henriette share:

• Sarah got sick at 20, and didn’t get her diagnosis of SIBO until 5 years later
• how rare a diagnosis of SIBO can be, but how common Sarah’s experience in the medical system — both in the UK and in the US — was
• Sarah has been treating her condition with a low-FODMAP diet, among other protocols
• Erica was diagnosed with lupus a decade ago, and waited 3 years for her diagnosis (she was originally misdiagnosed with ankylosing spondylitis)
• Erica’s main lupus complication: pericarditis (inflammation and fluid around the heart), which has become chronic
• that Henriette had her first kidney transplant at 19 (her mother donated); 20+-years later, her husband was her second donor
• that Henriette developed drug and alcohol addiction between transplants
• that Henriette has also developed nerve damage which has left her in chronic pain; she also lives with migraines
• that addiction recovery is daily work; Henriette relies mainly on spirituality to remain in recovery, and makes the decision to heal every day
• Henriette’s early understanding that she had to literally perform illness — she had to LOOK sick and avoid wearing makeup, etc. to be taken seriously by clinicians
• how COVID has coincided with chronic illness diagnoses, and how it’s affected social response in the Spoonie community
• their takes on the healthcare systems in the US, UK, and Canada
• a discussion of representation in the disability and chronic illness space — because so little media is actually representative of the range of experiences in the community
• that Henriette’s own father died of alcoholism at 38
• the importance of community if you’re living with chronic illness or disability

This is a public episode. If you’d like to discuss this with other subscribers or get access to bonus episodes, visit uninvisiblepod.substack.com/subscribe