Uninvisible Pod

Uninvisible Pod

An award-winning health podcast about invisible & chronic illness & disability.

Latest From Series

128: Diversability Founder Tiffany Yu

Tiffany Yu is the CEO & Founder of Diversability, an award-winning social enterprise to amplify disabled voices; the Founder of the Awesome Foundation Disability Chapter, a monthly micro-grant that has awarded $49.5k to 50 disability projects in 8 countries; and the host of TIFFANY & YU, the podcast. She serves on the San Francisco Mayor’s Disability Council and was a 2020 Co-Chair of the World Economic Forum Sustainable Development Impact Summit. At the age of 9, Tiffany became disabled as a result of a car accident that also took the life of her father. She started her career in investment banking at Goldman Sachs and has also worked at Bloomberg and Sean Diddy Combs' REVOLT Media & TV. She is a 3x TEDx speaker and spoke on 5 sessions at the World Economic Forum Annual Meeting in Davos. She has been featured in Marie Claire, the Guardian, and Forbes. Most recently, Tiffany was named one of TikTok's 15 API Trailblazers. It is through this platform that she posts amazing educational content, including the "Anti-Ableism Daily". Go check her out! Tune in as Tiffany shares: her “disability origin story”, which left her permanently disabled — and also took her father’s life that she was most recently diagnosed with PTSD related to the accident that caused her disability her take on “toxic positivity”, and how it manifested in her life akin to internalized ableism how her identity as the daughter of Asian immigrants has shaped her experience: “the nail that sticks out is the first to get hammered down” visibility and invisibility in the disability experience what disability inclusion really look like why TikTok has been such an important space for her to occupy in anti-ablest allyship what an ableist micro-aggression is — how to spot them and feedback mindfully how she taught herself to own her disability — and how this realization was the foundation of Diversability four tips for being an ally to the disabled community
June 9, 2021

127: Spoonie Artist & Activist Mimi Butlin of @CantGoOut_ImSick

In 2012, while studying at university, Mimi Butlin contracted viral meningitis — from which she never fully recovered. Since then she has been diagnosed with Ehlers-Danlos syndrome, fibromyalgia, postural orthostatic tachycardia syndrome, and ME/CFS (as Mimi wryly notes, “a really lovely bunch!”). For years, she felt completely alone and that convinced she was responsible for her pain. In 2018, she started the Instagram account @CantGoOut_ImSick, a platform where she posted drawings of what living with illness was like — including portraits of other chronically ill women who had gone through similar experiences. Because of her work, including the #BelieveUs campaign, she has been featured in Women’s Health magazine, Grazia magazine, and on Refinery29 and Bustle. Recently, she collaborated with disability charity Leonard Cheshire to create the #DisabledLooksLikeMe campaign to raise awareness of invisible disabilities. Mimi is very proud of what was achieved throughout the campaign, which saw disabled influencers, creatives, and celebrities — such a Selma Blair and Sinead Burke!! — wearing her t-shirts and supporting the campaign on social media. She is currently taking a break from her work in order to accommodate her health (and wow, can we relate), but she’s extremely grateful to the people she has met along the way, who have helped her accept her conditions and feel proud of who she is. Tune in as Mimi shares: that of all her symptoms, chronic pain is most in control of her day-to-day that she was diagnosed with viral meningitis, and subsequently with Epstein-Barr Virus (EBV, or mono) and gastroenteritis — multiple times — and never fully recovered a discussion of access issues in healthcare, including the NHS and optional paid enhancements why doctors have a responsibility of care — both emotional and physical how mental health and medical PTSD have played a role in her health experience how she first received notice for her art — from fellow Spoonie, Lena Dunham! how her illnesses changed her relationship with her mum why she recommends those who identify as female bring a cis man with them as an advocate in doctors’ appointments her experiences of not being believed by medical practitioners who has inspired her in the disability community how she’s cultivated pride in her health status how research can give you perspective on your experience — and the experiences of others
May 26, 2021

126: The Mata Sisters, Founders of Looms for Lupus

In 2009, Juana Mata was diagnosed with lupus. One of three very close sisters, nobody in her family had heard of this illness prior to her diagnosis — or knew how to handle her support and treatment. As the family began to research education, resources, and the history of the disease, they began to discover that it was largely misunderstood, and that it needed awareness-raising to fund research for a cure. The sisters began gathering in therapeutic loom knitting circles as they processed their experience. They recognized how supportive this art therapy was in relieving their stress, and wanted to extend this gift to others in their community. In 2011, they founded Looms for Lupus, a non-profit providing resources and awareness to those affected by lupus, fibromyalgia, and other comorbid conditions — with a focus on the needs of minorities and families of color. Working with local, national, and global organizations, Looms for Lupus forms partnerships with similar agencies and patient care facilities to provide support and resources. Their aim is to create an environment to reassert a sense of hope during a time of illness, and to empower individuals to take charge of their lives through chronic — and sometimes life-threatening — illness. Tune in as Estela & Juana share: what Juana’s early symptoms of lupus were — and that she was initially diagnosed with rheumatoid arthritis (RA) that Juana had to argue with a doctor (who wanted to write her off as anxious) in order to get her diagnosis and be heard — and that by the time she was diagnosed, her life was in peril that if Juana had not advocated for herself, she wouldn’t be here today how Estela was diagnosed with fibromyalgia, along with her daughter why Estela pursues holistic treatment to manage her pain the distinct role of “invisibility” in their illness experiences their experiences of bias in the healthcare system why they created Looms for Lupus, and the importance of providing patient resources in Spanish their tips for managing chronic illness with grace
May 12, 2021

125: Fight Like A Warrior Founder Alexa Chronister

Alexa Chronister is the founder and president of Fight Like A Warrior (FLAW). She created FLAW after creating the Cards For Warriors program (sending handmade cards of encouragement to chronic illness warriors across the globe, reminding them they are not alone) in 2016. With the goal of creating a community of empowerment and improving the lives of those with chronic health conditions, she developed FLAW as a way to cope with her own health challenges, while giving back to others (and won a WEGO Health award in 2019 to prove it!). In 2020, she received her bachelor's degree with honors distinction in public policy (with a minor in social entrepreneurship!) from the University of Delaware, and completed a thesis focused on health policy and disease advocacy among POTS patients. Never a shrinking violet, she also plans to attend law school and pursue a career in health policy. In response to the COVID-19 pandemic in 2020, Alexa was instrumental in launching FLAW’s #ProtectTheVulnerable campaign, in partnership with numerous patient advocacy platforms including Health Advocacy Summit (founded by former guest Sneha Dave!), Support Fibro (founded by former guest Melissa Talwar), and InvisiYouth (founded by former guest Dominique Viel), among others. Alexa has a passion for working with individuals and communities to advance policy, advocacy, and entrepreneurial efforts, particularly within healthcare, focused on improving access and reducing inequity. [A note that this episode was recorded a year ago, hence features some dated mentions of the #ProtectTheVulnerable campaign and Alexa’s recent college graduation!] Tune in as Alexa shares: how she was diagnosed with hypermobility syndrome in childhood and, later, Ehlers-Danlos and POTS (postural orthostatic tachycardia syndrome) how she has learned to step up into the advocacy space how she manages her health day-to-day why it’s so vital our various practitioners find ways to communicate to one another about our cases how access directly impacts healthcare outcomes and patient experiences what inspired her to start Cards for Warriors at the age of 18, and how it laid the groundwork for what would become Fight Like A Warrior why it’s so important to listen to our bodies, especially as Spoonies the importance of self-advocacy what the future holds for FLAW
April 7, 2021

124: Julian Gavino, @TheDisabledHippie

Julian Gavino (he/him) is a trans-masculine model, writer, coach, and sex-positive disability influencer living with Ehlers-Danlos syndrome and comorbidities. An outspoken advocate for both the trans and disability communities, Julian grew up never seeing people in media who “looked like” him…and his work has become a direct response to that experience. Many may know Julian through his Instagram account @TheDisabledHippie, which he started during a health crisis while in college for neuropsychology. Now a coach serving the disabled and LGBTQIA+ communities, he has also become a social media expert and co-founder of Disabled with Dignity, a platform featuring disabled stories — by disabled people, for disabled people. In his work, Julian aims to normalize and destigmatize trans and disabled bodies in media — by facing discrimination down and creating space for representation. Tune in as Julian shares: that he started experiencing symptoms from the age of 5, from digestive distress to dislocations — and was initially diagnosed with Celiac that he largely uses his wheelchair these days, in order to support his mobility that he was recently diagnosed with Hashimoto’s disease, but has been monitoring his thyroid health from an early age that as far as he knows, most of his diagnoses are likely connected to EDS the most significant impact on his health in his adult life: his neurological conditions, including a demyelinating neuropathy similar to MS that can flare without warning the emotional toll of his health conditions — from awareness of mortality to a young age, to the validation of diagnosis that growing up female meant that he was gaslighted over his health frequently how he stepped into self-advocacy that he started his Instagram feed as a way to manage his emotional journey through disability that his treatments include infusions, a feeding tube, multiple medications, physical therapy, and more the supportive role his service dog, Atlas, has played in his life — both physically and emotionally how his gender identity has influenced his experiences within the medical system — including threats to his safety from professional caregivers his thoughts on healthcare reform
March 31, 2021

123: Don’t Judge A Book By Its Cover: Shayla Swint on Life with EDS

Shayla Swint is a 25-year-old college grad from Houston, Texas. Like the old adage, “Don’t judge a book by its cover,” Shayla is so much more than what we can see…she lives with connective tissue disorder Ehlers-Danlos Syndrome (EDS), hypermobile type. She’s survived over 15 surgeries thus far, and lives in an almost-constant state of pain and anxiety due to the condition. When she says that “her body’s trying not to fall apart,” it almost seems an understatement. And yet…she manages to keep going. In this interview, she tells us her story. Tune in as Shayla shares: that she suffered from numerous injuries during physical activity in childhood, and her hypermobility was also present at this early stage of development that early on, her orthopedist suspected she had EDS — but was unable to provide the genetic testing to confirm it that she was finally diagnosed with hypermobile EDS a decade later that between the ages of 13-18, she had multiple surgeries — and didn’t get her official diagnosis until 2 years ago, at the age of 23 why her diagnosis was validating that one rheumatologist told her, “Black people don’t get EDS” — and her response was to lose all trust in the system for a time the importance of mental health support — and that it was never recommended as part of her diagnosis or treatment plan…but, thankfully, by her mother that she’s been exploring a vegan diet in order to reduce inflammation that her mom has chronic migraine — and understands what it’s like to advocate and live in chronic pain how she has disclosed and managed her pain in work environments — and where she’s struggled to achieve easy accommodations (even when she presented solutions) how triggering it can be to pursue legal action in disability cases — and why so many individuals don’t do so why remote work during COVID has been so much more comfortable for her the difficulties she had receiving disability accommodation during college, and why her disability being invisible made that fight even harder how her race has impacted her treatment in the medical system the impact of community on her experience, especially as a WOC why change in our healthcare system is so desperately necessary
March 24, 2021

Uninvisible Pod

Uninvisible Pod is a podcast about invisible conditions and chronic invisible illness, featuring interviews with survivors, their loved ones, advocates, and experts in varied healing modalities, from medical to holistic. Hosted by Lauren Freedman, a voice actor, writer, and activist, who lives with depression, anxiety, Hashimoto’s disease, and sleep disorders, Uninvisible uncovers real stories of survival and humanity – complete with laughter. In truth and with candor, we offer solutions – and challenge the world to change.
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Lauren Freedman

Lauren Freedman

Lauren Freedman is a voice actor, writer, and activist who lives in Los Angeles. Originally from NYC, she has lived with depression and anxiety since she was a teen, and was first diagnosed with Hashimoto’s disease and sleep disorders in 2017. This sparked her interest in the invisible illness community and her fellow “Spoonies”, with whom she wishes to commune and share information, inspiration, and comfort while advocating for greater awareness. Lauren graduated from London’s Royal Academy of Dramatic Art with a BA (Hons) in Acting in 2008. She’s a longtime student of the School of Hard Knocks and What’s-A-Matta-U. Fall down seven times, stand up eight.

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