Helloooo summer awareness! Between #ChronicDiseaseAwarenessDay, #FibroidAwarenessMonth, and the #BlackDisabledLivesMatter movement, there was a TON to become more educated about this past month in the chronic illness community! Uninvisible Pod is ecstatic to be doing our part and showing support by featuring interviews with our incredible guests from July.
Who did we speak with in July? We spoke to Sarah Stewart, Erica Lupinacci, and Henriette Ivanans-McIntyre about the Trust Me, I’m Sick documentary, and how invisible conditions shape relationships; Lisa Sniderman (aka Aoede) about creative healing and rare autoimmune disorder, dermatomyositis; Tanika Gray Valbrun of The White Dress Project about the race crisis in America and raising awareness of fibroids; Jennifer White-Johnson about autism, ADHD, activism, and #BlackDisabledLivesMatter; and Daniel Jones about understanding autism from the autistic person’s perspective.
July is not a month to be missed! Take a break from your daily pandemic routine and spend some time catching up with your fellow spoonies. Also happening in July, Uninvisible Pod has been nominated for two WEGO Health Awards and we’d love to have your vote! Head on over to our homepage to show your support by endorsing the show.
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. 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. 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. 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.
Lisa Sniderman, aka Aoede, is an award-winning folk-pop musician, playwright, author, and filmmaker from San Francisco. She’s been honored with more than 85 awards for songwriting, audiobooks, films, stage plays, and books since 2012 — all while living with rare autoimmune disorder dermatomyositis (or DM, as she calls it), a progressive muscle weakness disease. Her memoir, A Light in the Darkness: Transcending Chronic Illness through the Power of Art and Attitude chronicles her decade-plus journey living with DM while creating to heal. As Aoede, she creates and records unique, original full-length fantasy musicals as audiobooks that she adapts to musical theater stage plays. Her goal as an advocate is to encourage and inspire others — especially those experiencing transformations, from chronic illness and disability to unexpected life challenges.
Tanika Gray Valbrun is an award-winning journalist and women’s health educator. She is the founder of non-profit The White Dress Project, an organization dedicated to bringing awareness, raising funding, and increasing education about uterine fibroids. Tanika lives with uterine fibroids herself, and has successfully worked with doctors, health advocates, and elected officials in multiple states to get legislation passed declaring July Fibroid Awareness Month. Recognized as a thought leader and patient advocate for uterine health, she has also spoken at various events domestically and internationally. In addition to encouraging women to be their own health advocates, We hope this interview will inspire you all to take action toward combating institutional and systemic racism, and to reconsider your experiences in the medical system through a sharp and discerning lens.
Jennifer White-Johnson is a designer, photographer, art activist, and educator. Her work focuses on the intersection of content and caregiving with an emphasis on redesigning ableist visual culture. In this interview, Jen shares her experience living with Graves’ disease and undiagnosed ADHD, as well as her son’s diagnosis of autism at age 2. This motivated the release of an advocacy photo zine entitled KnoxRoxs, which was intended to give visibility to children in the Black autistic community. As we discuss on the show, Jen believes that true allyship can only come from designing with the disability community in mind. Jen’s mission, in her words, is to reimagine “Mothering as an act of Resistance”, redesigning ableist visual culture by “encouraging communities to engage in conversations about acceptance, rooted in how Black Neurodivergent children are valued and seen.”
Daniel Jones is the founder of The Aspie World (TAW), an internationally-recognized patient leadership platform that works to help the world understand autism — from an autistic person’s perspective. It has become the UK’s #1 resource for Asperger’s syndrome, ADHD, OCD, and dyslexia. With a YouTube audience of over 100k and over 8 million views, Dan has become an influencer and public speaker — and a leading voice in the autism community. Diagnosed on the spectrum at the age of 26, Dan’s life suddenly came into sharp focus. In this episode, he sat down with Lauren to talk about his experience — and how patient advocacy has changed his perspective.