S7, Ep 28- Spooky Tales from the Health Care System: Lessons in Advocacy

In this special Halloween episode of The Health Advocates, we’re diving into some spine-chilling experiences in the health care system. Our guests open up about their scariest moments — from misdiagnoses and panic attacks in MRI machines to doctors dismissing their pain. But it’s not all fright! They share how these tough experiences helped them become stronger self-advocates, turning fear into resilience. Among the highlights in this episode: 01:34: Shelley Fritz, Patient-Centered Engagement and Insights Manager at GHLF, describes her experience on Easter weekend in 2017, when she started experiencing severe chest pain and difficulty breathing 06:47: Shelley shares that she was diagnosed with bilateral pulmonary embolisms (blood clots in both lungs) — a potentially fatal condition and recalls how a nurse, unaware of her diagnosis, carelessly lifted her, worsening her pain. Shelley had to advocate for different pain management, eventually receiving proper treatment after several hours 11:26: Sarah Shaw, Associate Director of Diversity, Equity, Inclusion & Community Outreach at GHLF, shares how her doctor’s frustration with her lack of progress led to a shocking comment, labeling her a “problem patient.” Sarah felt blamed for not responding to treatments but decided to find a new doctor who would advocate for her and work collaboratively on her treatment plan 15:23: Sarah reflects on her positive experience with her new doctor, who reassures her that “the treatment failed you, not the other way around,” a supportive approach that transformed her journey, emphasizing the importance of finding a doctor who listens and treats patients as partners in their care 18:53: Zoe Rothblatt, Director of Community Outreach at GHLF, shares her own story of feeling dismissed by a dermatologist who kept her waiting for over two hours, only to rush through the appointment and offer unsolicited advice on her autoimmune treatment, making her feel uncomfortable and disregarded 21:59: Zoe reflects on the lessons learned: the importance of trusting her instincts, finding providers who respect her time, and ensuring she feels comfortable speaking up during appointments 26:44: JP Summers, Senior Patient Advocate and Community Outreach Manager at GHLF, describes the panic attack she experienced while in the MRI machine due to severe claustrophobia. This led her to advocate for an open MRI despite initial insurance denials, highlighting how crucial it is to speak up for her needs in challenging health care situations 32:54: Zoe thanks JP for sharing her story, acknowledging the anxiety diagnostic tests can trigger for chronic illness patients, and underscores the importance of knowing there are often alternatives available 36:19: What our hosts learned from this episode Contact Our Hosts Steven Newmark, Chief of Policy at GHLF: [email protected] Zoe Rothblatt, Director of Community Outreach at GHLF: [email protected] A podcast episode produced by Ben Blanc, Associate Director, Digital Production and Engagement at GHLF. We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to [email protected] Catch up on all our episodes on our website or on your favorite podcast channel.See omnystudio.com/listener for privacy information.