Show Notes
Episode 8: Chronically Ill, Chronically Unsupported Because apparently being sick isn't hard enough. Living with chronic illness is challenging enough without having to fight the very systems designed to support you. In this episode, we're getting into some of the harder conversations around living with chronic illness in New Zealand. From financial support that disappears because your partner earns "too much", to overwhelmed hospitals, endless waiting lists and the exhausting reality of having to constantly advocate for yourself. Livvy shares her personal experience of losing financial independence because of how the Supported Living Payment is assessed, while Harriet talks about the growing fear of needing hospital care when the healthcare system is already stretched to its limits. We're not here to get political. We're here to talk about what these decisions and systems actually mean for the people living with them every day. Because being chronically ill shouldn't mean being chronically unsupported. And resilience shouldn't be a requirement for getting the help you need. We'd love to hear from you. Have you experienced similar challenges accessing healthcare or financial support, whether in New Zealand or elsewhere? Because life happens outside the waiting room. 💜
More from Outside the Waiting Room
Motherhood, fertility, and relationships can take on a different dimension when chronic illness is part of the equation. In this episode, Harriet and Olivia talk candidly about living with lupus and the questions, emotions, and medical decisions that can shape future plans. Together, they explore how health can affect relationships, intimacy, and the deeply personal decision of whether to start a family.
The jump from paediatric care to adult services can feel like getting dropped off a cliff, and for chronically ill patients, nobody warns you how hard that landing can be. Harriet and Livvy unpack what it really means to grow up inside the health system, from childhood hospital memories to the grief, confusion, and sudden self-advocacy that come with aging out of paeds.
Too sick for healthy people, too healthy for sick people. If you have ever felt stuck in that in-between world, this conversation will hit home. We get honest about what it really means to try to fit in with a chronic illness, why that pressure gets so much heavier in your teens and twenties, and how the cost of pushing through can follow you for years.
When chronic illness and work collide, the real question is not "Can you do the job?" it's "What does it cost you to keep doing it?" Harriet and Livvy get brutally honest about the hidden energy tax of working while chronically ill, from commuting, appointments, and office expectations to the constant pressure of deciding what to disclose, when to speak up, and how much to push.
In this episode, Olivia and Harriet share their personal experiences living with chronic illnesses, exploring the invisible struggles, societal misunderstandings, and the importance of compassion. They highlight how unpredictable health can be, the misconceptions about appearance and activity levels, and offer insights into navigating this complex reality. Main topics covered: The unpredictable nature of chronic illness and flare-ups The invisible fatigue and physical exhaustion experienced daily Society’s misconceptions about what illness looks like and how people mask symptoms The emotional toll, including guilt and anxiety about doing enough How to support loved ones with chronic conditions through thoughtful check-ins The process and challenges of using mobility aids and parking passes The importance of self-care, rest, and setting boundaries to manage health Differentiating between regular tiredness, fatigue, and chronic fatigue