13 ~ How to talk about your chronic illness without letting the story define you

13 ~ How to talk about your chronic illness without letting the story define you

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 leaves your nervous system wrecked for days. But the version that's true to your chronic pain experience, that doesn't drag you back into the worst of it every time, and that doesn't accidentally become the thing keeping you stuck. Because there's a really thin line between sharing your story as part of processing, and becoming the story. And once you cross it without realising, it starts working against your healing. We talk about why words like "always" and "never" are ones I genuinely never use with my clients. We talk about what happens in your brain when you downplay your chronic illness to make it easier for everyone else. And we get into something I feel strongly about - chronic illness identity. Who are you beyond your diagnosis, your symptoms, your roles? This is something we work on actively inside the Spoonies Community, and it's one of the most quietly powerful shifts a spoonie can make. This episode also touches on the community doors opening 1–5 June, including the free webinar series "The Missing Piece of Your Healing Journey That Nobody Talks About." If you've ever felt exhausted by having to explain your chronic pain or illness to people or feel like your condition has quietly taken over how you see yourself — this one is for you. Takeaways * Communication Challenges * Choosing the Right Words * Cultural differences in communication * The importance of community and sharing personal stories Chapters * 00:00 Adapting to Different Scenarios * 24:47 Opening the Doors to the Spoonies Community * 30:38 Introducing Yourself in Different Settings * 37:03 The Importance of Community and the Spoonies Community

12 ~ Why me? Chronic illness & the fear of "this is forever". Rachelle & Saskia (NYAP) explain

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 them as information. Not in a bypass-y way. Not in a “just think positive” way. But in a grounded way that still makes space for how exhausting it is when you’ve tried everything, you’re scared of change, and part of you is convinced this is just your life now. We also talk about the fear and resistance that can come up when healing asks you to live differently, and why the goal is not to flip your whole life upside down overnight. Sometimes the most important thing is to lower the threshold and make one new choice your body can actually handle. We talk about: * why “why me?” is such a common chronic illness thought loop * the spiritual meaning of pain & pain as a catalyst for change * how the labels you use (like “chronic”) can make you feel more trapped * how to work with fear and resistance when you’re already exhausted * lowering the threshold: making change doable in real life * intuition, soul connection & listening to your body’s messages * medication, hospitals & the fine line between support and giving away your power * why healing needs a tailor-made approach, not “one-size-fits-all” This episode is for people living with chronic illness or chronic pain who feel stuck in “this is forever,” and who want a perspective that includes the body, emotions, nervous system, and intuition, without pretending it’s easy. Chapters 00:00 Introduction 02:00 Why pain exists (duality, growth & clarity) 06:20 Pain as a catalyst, not a dead end 09:40 The “hospital loop” & what to do when you feel stuck 14:40 Change, alignment & why healing asks for new choices 17:10 Fear of change when you’re barely holding life together 21:00 Lower the threshold: making change manageable 23:10 Do different symptoms have different meanings? 29:10 Eline’s gut pain story & emotions in the body 35:00 Sensitivity, insecurity & being “different from the herd” 40:20 Pain as soul communication & zooming out of hyperfixation 45:10 Medication, hospitals & keeping your power in the process 53:30 What makes illness “chronic” & softening the label 60:00 Where to find Not Your Average Psychic Find Rachelle & Saskia here: Not Your Average Psychic on Instagram + Facebook https://notyouraveragepsychic.com [https://notyouraveragepsychic.com] If this episode resonates, I’d love for you to leave a review, share it with someone who’s been asking “why me?” too or send me a DM on Instagram.

11 ~ Miscarriage grief: when your body is still pregnant but the baby is gone

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 us. The scan, the limbo. Still feeling nauseous and exhausted while knowing the pregnancy isn’t viable. Then the waiting & the bleeding. The hospital. The D&C. And the grief that hit weeks later, when the world had already moved on. We talk about: * deciding whether to have children when you live with chronic illness / chronic pain * miscarriage and early pregnancy loss * the limbo after miscarriage (still having pregnancy symptoms) * the physical reality: bleeding, clots, hospital care and D&C * anxiety, panic and using nervous system tools in medical settings * delayed grief, loneliness, and unhelpful comments * how partners can process pregnancy loss differently * fear, closure, and trying again after miscarriage This episode is for anyone who’s been through miscarriage or pregnancy loss, anyone trying to conceive after loss, and anyone navigating the question of having children while living with chronic illness. Chapters 00:00 Introduction and Trigger Warning 05:15 Moving to Ibiza and Changing Perspectives 11:40 Concerns and Fears During Pregnancy 19:33 The Limbo Period and Emotional Struggle 26:12 The Physical Experience 36:45 Recovery and Reflection 42:25 Processing Grief and Coping Mechanisms 47:40 Impact on Mental and Emotional Health If this resonates, I’d love for you to leave a review, share it with someone who needs it, or send me a DM on Instagram.

10 ~ Manouk de Bijl’s ulcerative colitis healing story: from symptoms to remission

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 table. Manouk shares how stress, survival mode, and trying to keep up with a demanding student life made everything worse, and why she reached a point where she knew she had to look beyond the path she was on. This is not a neat, polished “just do this and you’ll be fine” episode. It’s an honest conversation about what healing actually asked of her. Mindset, belief, nervous system regulation, food, emotional processing, and learning to trust her gut again, literally and emotionally. We also talk about remission, intuition, and the grief of realising the medical system never asked her how she did it, even when her test results showed no evidence of disease. If you’re living with ulcerative colitis, Crohn’s, chronic illness, gut issues, inflammation, or you’re stuck in the cycle of pushing through and crashing, I think this episode will land. Please find more of Manouk on: www.manoukdebijl.com [http://www.manoukdebijl.com] or https://www.instagram.com/manoukdebijl/ [https://www.instagram.com/manoukdebijl/] If this episode resonates, please leave a comment and I will get back to you asap!

9 ~ Sex, intimacy & chronic illness: the conversation no one is having

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 and a lot of questions that people often don’t talk about out loud. In this episode, we share our own experience of navigating intimacy after my accidents, while living with CRPS, FND, chronic pain, spasms and fatigue. We talk about what changed for us, what felt hard, what helped, and why communication became such a big part of finding each other again, not just as patient and carer, but as partners. We talk about: * sex and intimacy with chronic illness * how chronic pain and disability can affect relationships * the impact of body changes on confidence and self-image * how to talk to your partner about intimacy * why intimacy is about more than sex * rebuilding trust, safety and connection in a relationship This episode is for people living with chronic illness, chronic pain or disability, and for partners who want to better understand how to navigate intimacy together. Chapters * 00:00 Introduction to the Topic * 05:30 Impact on Romanticism and Spontaneity * 11:18 Balancing Caregiver and Partner Roles * 17:00 Laughter and Lightheartedness * 22:24 Diverse Forms of Intimacy * 35:48 Exploring Different Forms of Intimacy If this episode resonates, I’d love for you to leave a review, share it with someone who needs it, or send me a message on Instagram with your thoughts or questions. And if you’d like us to record a part 2 on this topic, let me know!