The Spoonies Community

This week on The Spoonies Community podcast, Marcus is back and we recorded the day after our 9-year anniversary, which felt like the right energy for a conversation this honest. We get into something that doesn't get talked about nearly enough in the chronic illness space: how do you actually tell your story to people? Not the watered-down version you give a taxi driver. Not the full version that...

In this episode, I’m joined by Rachelle and Saskia from Not Your Average Psychic to talk about chronic illness, chronic pain, and the question so many of us have asked in the middle of a flare, a diagnosis, or yet another hospital visit: why me? We talk about the spiritual meaning of pain, and what changes when you stop seeing symptoms as proof that something is “wrong with you” and start seeing t...

In this episode, Marcus and I share our miscarriage story. Trigger warning: miscarriage / pregnancy loss. We also talk about the years before that. The journey into whether we even wanted children, and how chronic pain, disability, trauma, and caregiving changes the whole conversation around parenthood. Then we share what about our pregnancy loss and what the miscarriage actually looked like for u...

In this episode, I’m joined by Manouk de Bijl to talk about her ulcerative colitis healing story, from her first symptoms as a teenager to years of hospital visits, medication, pain, and being told it would be chronic. We talk about what it’s like to live with an invisible gut disease as a young woman, including the shame and fear that comes with symptoms you do not exactly bring up at a dinner ta...

In this episode, Marcus and I are talking about sex, intimacy, chronic pain and chronic illness. We’re having an honest conversation about how disability, pain, fatigue and body changes can affect intimacy, relationships and self-confidence. When you live with chronic illness or disability, intimacy can feel complicated. It can bring up insecurity, awkwardness, grief, fear, body image struggles an...

Eline & Marcus sit down for an honest (and sometimes hilarious) conversation about somatic work for chronic pain and illness — and why it's not as "woo-woo" as Marcus originally thought. If you've ever wondered why chronic pain won't go away even when doctors say there's nothing wrong, or how your body stores emotions and trauma ... this episode is for you. We talk about: How your brain interp...

Marcus & Eline delve into the challenges of navigating the loss of autonomy over your own body & life and the dynamics of care and independence within a relationship. It explores the impact on both Marcus and Eline and the adjustments made to manage these challenges effectively. The conversation delves into the dynamics of prioritizing a partner's needs and balancing responsibilities in a...

Marcus & Eline dive into travelling as a wheelchair user! They discuss what is needed to travel comfortably, challenges, highlighting the need for careful planning and consideration. But it also explores the very positive impact of traveling on physical and mental well-being, as well as the process of overcoming fear and expanding horizons. The conversation delves into the intricacies of trave...

Amelia Peckham shares her journey from the accident that left her with a permanent disability to her recovery and rehabilitation. The conversation covers her life before the accident, the impact of the accident, the challenges of the first six months, and the motivation and support that helped her through. All of this led her to building her own company called Cool Crutches. She was determined tha...

Marcus & Eline delve into the origin of the Spoonies community, the concept of the Spoon Theory, and the creation of a safe and supportive space for individuals living with chronic illness. It explores the impact of the Spoon Theory, the need for a supportive community, and the various components of the Spoonies community, including support, connection, learning, and resources. The conversatio...

Eline & Marcus delve into the journey of chronic illness, exploring emotional healing, somatic work, grief, joy, independence, alternative healing, identity, community support, professional growth, and spiritual awakening. It highlights the transformative power of somatic work and the journey to independence, offering hope and inspiration to those facing similar challenges (speaking from Eline...

The podcast episode continues on where Eline & Marcus left off: right at the second accident. Eline & Marcus delve into the experiences of living with chronic illness, reflecting on past challenges, navigating through hospitalization, new diagnosis and treatment, the impact on daily life, challenges with recovery, taking control of the situation, and finally the way into a new direction to...

The podcast episode delves into the personal journey of Eline, living with chronic pain and illness, covering the challenges, setbacks, and moments of progress. It explores the impact of the accident, hospitalization, surgery, recovery, and the pursuit of a diagnosis. The narrative also touches on the emotional and physical toll of the journey, as well as the resilience and hope for a better futur...