The Spoonies Community

In this episode, I'm joined by Dawn Ford, grief and bereavement specialist, and a woman who lived through fibromyalgia, chronic fatigue, multiple autoimmune diseases, and cancer, and came out the other side having healed herself from fibromyalgia through the work of releasing suppressed grief.

This is one of those conversations that felt like confirmation of everything I talk about in this space. The connection between unprocessed emotion and physical illness, the way our bodies hold what our minds can't face. Dawn didn't come to this from theory. She got there through years of chronic illness, a moment in a pain clinic where a doctor asked "when did you last feel truly well?" and the answer was 1988. That's 22 years she hadn't been well, and she hadn't even known it.

She started the Grief Recovery Method in 2016, intending to help other people. What she didn't expect was that she was healing herself at the same time. And when she finished the course, the fibromyalgia was gone.

We talk about:

• collapsing at work in 2010 and spending 18 months without a diagnosis or any support
• what it's like to not feel believed, and why that stays with you as a core wound
• the doctor who asked "when did you last feel well?" and how that question changed everything
• discovering she hadn't felt well since 1988 — and the wedding day accident that started it all
• what fibromyalgia and chronic fatigue actually did to her life: no sheets on the body because the weight caused pain, counting every step
• losing her job, her financial independence, her sense of self
• the impact on her family and watching the grief on their faces
• prioritising and pacing as survival, not as defeat
• the first time emotional release changed something physical
• finding the Grief Recovery Method and what it actually is
• healing herself from fibromyalgia while training to help others — and why she found it terrifying to say out loud
• why fighting the illness depleted her in a way that accepting it never did
• leaning into emotions rather than layering over them
• making keepsakes from the clothes of people's loved ones, and how she was doing grief work without naming it for years
• how unresolved grief builds in the body over a lifetime — and what she believes happened to hers

This episode is for anyone living with fibromyalgia, chronic fatigue, chronic illness, or autoimmune disease who has ever had the quiet sense that there is something emotional underneath the physical. And for anyone who has never felt truly believed.

Chapters:

00:00 Introduction — who Dawn is
01:39 2010: collapsing at work and 18 months to a diagnosis
09:00 "When did you last feel well?" - the question that changed everything
13:50 Medical gaslighting, no compassion, and finding her own way 18:03 The toll on family, career, and sense of self
22:20 The Healing Journey workshop: first time emotional release changed something physical
27:28 Grief Recovery Method - healing herself while training to help others
36:24 When acceptance shifted something, leaning into emotions, and what unresolved grief does to the body

Please find more of Dawn on:
Instagram: @dawnford_lossandwellbeing
Website:  https://www.dawnford.co.uk 

If this episode resonates, I'd love for you to leave a review, share it with someone who needs it, or send me a DM on Instagram.

In this episode, Marcus and I are back with the conversation we kept pushing to the end of S2E1: what does it actually mean to give birth and become a parent when you have CRPS and FND?

We're at 23 weeks now. The twenty-week scan was good and the baby is healthy, but a week ago the spasms came back for the first time in a while and Marcus had to help me through them. We'd both quietly hoped that part was settling. It had not.

We also discussed how much to disclose about the medical history before birth. I told the midwife about my leg at the appointment and then immediately downplayed it, because I didn't want to be flagged as medically complicated from day one. But we're giving birth in Spain, and even though I speak the language, I cannot be the one navigating medical conversations in the middle of labour. Marcus doesn't speak Spanish. So we decided to work with a doula and a private midwife. How we came to that? You can listen to it in this episode!

Then there's what 20 weeks of bedrest did to my body. With CRPS, stopping movement is one of the worst things that can happen, and I had no choice. And now I'm trying to rebuild that with a deadline, carrying more weight every week, with an inner voice telling me that fifteen minutes of physio is nothing. Even though I've worked with that voice for years. It still comes back every single time.

This is not an episode with clean answers. Marcus talks honestly about what it's like to watch your partner go through spasms with no one to ask who's been there from that side. And I talk about the parts that made me insecure: whether I'll be able to get out of bed at night, carry her, walk around with her. The kind of mother I always imagined being, and what it looks like when the body you have might not quite match that picture.

We talk about:

• how much to disclose your chronic illness to a medical team that doesn't know you or your history
• writing a birth plan that includes what to do if spasms happen during labour, and why that conversation matters when you have CRPS
• working with a doula in Spain so the delivery room team understands what's happening and neither of us has to manage it in the middle of labour
• what 20 weeks of bedrest actually does to chronic pain and to your head
• the inner critic that makes starting over feel like failing
• the fear of not being a "good mom": being able to get up in the night, carry her, walk around with her at 2am, and what we did with that fear
• what parenting with chronic illness might actually look like
• building a parenting normal that works for our family instead of the one we always imagined and see around us
  
  
  This episode is for anyone navigating pregnancy or parenthood with chronic illness, chronic pain, or CRPS, or for the partners beside them figuring it out without a roadmap.

Chapters

00:00 Catching up on 23 weeks and the spasms last week
01:28 Disclosing CRPS to the midwife and why I brushed it off
04:39 The birth plan, spasm protocol and the doula
07:06 20 weeks of bedrest and watching my leg get worse
11:41 Starting over with movement and the inner critic
15:30 The fear of parenting with limited mobility
22:32 The spasms coming back and what triggered them
31:00 Birth, pain tools and building our own normal

If this episode resonates, please leave a comment and I will get back to you asap!

In this episode, I'm joined by Miller Kerr. Miller got CRPS when she was 10 years old, from a knee to the thigh during a basketball game at recess. What should have been a bruise that faded in a week stayed. For six months, doctors called it a deep contusion, handed her crutches, and wondered quietly if she just wanted attention.

Then her therapist finally figured out it was CRPS. And after a failed nerve block and a children's hospital that sent her home after a few days, her mum went full mama bear and got her into the Cleveland Clinic, a holistic program that got her walking again in six weeks.

Back home in Dallas, Miller hid her CRPS for eight years. A single dance class turned into both her physical therapy and the place she finally stopped performing "fine." When she told her college teammates the truth at 18, they didn't doubt her. They reframed CRPS as her strength, and that shift changed everything.

Today Miller runs Burning Hope, a nonprofit raising money for CRPS research and awareness so the next person who Googles complex regional pain syndrome doesn't find only darkness. We recorded this across two continents, me in Spain, Miller in Texas.

We talk about:

• Getting CRPS at 10 from a playground injury and the six months nobody could name it
• Being doubted by doctors as a kid and what that does to you
• The Cleveland Clinic's holistic approach: OT, swimming, mind-body skills, and the lesson on acceptance
• What CRPS actually feels like, Miller's curling iron metaphor
• Hiding chronic pain for eight years so no one would look at you differently
• Finding dance and how it became both physical therapy and a reason to keep going
• Telling her college teammates the truth and the shift from weakness to strength
• Building your own pain scale instead of using the one in doctor's offices
• Starting Burning Hope, the 3K Walk Walk Strong, and the Blanket Project
• The fear of whether someone will love you with this part of your life
• What she'd tell her 10-year-old self

This episode is for anyone living with CRPS, complex regional pain syndrome, chronic pain, or chronic illness, or anyone carrying a story they've never felt safe enough to share yet.

Chapters

• 00:00 Introduction and how we connected
• 01:40 Who Miller was before CRPS
• 03:15 The playground injury and six months without a diagnosis
• 09:40 Getting the CRPS diagnosis
• 14:10 Getting into the Cleveland Clinic 1
• 6:17 Six weeks at the Cleveland Clinic and what actually helped
• 25:05 What is CRPS
• 29:42 Finding dance and hiding CRPS for eight years
• 35:08 Telling her teammates the truth and the mindset shift
• 41:09 How Miller's doing now and building your own pain scale
• 47:58 Burning Hope, the Blanket Project and what's next
• 56:06 What Miller would tell her 10-year-old self

Please find more of Miller on:

Instagram & Facebook: @millerckerr
Burning Hope: www.burninghope.org
Burning Hope on Instagram: @burninghopecrps

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.

In this episode, Marcus and I are back for season two with news we've been keeping to ourselves for 18 weeks. We're expecting a baby girl, due on the 24th of January.

But getting here was harder than we expected.

We pick up where episode 11 left off, talking through the decision to try again after the miscarriage, what trying to conceive after loss actually looked like for us, and the emotional reality of that first positive test. Then around week five, the nausea arrived. And it was nothing like morning sickness.

Hyperemesis Gravidarum (HG) kept me confined to a dark bedroom for weeks, unable to keep food or water down, losing four kilos. Marcus was in the US for the World Cup during the worst of it. Our neighbors came over every morning. I ended up in hospital in Ibiza for dehydration, and getting the right medication in Spain turned into a whole separate battle.

Then, at 14 weeks, the pregnancy complications kept coming. I started bleeding.

A subchorionic hematoma, a large blood clot in the uterus wall, four centimetres, found during a scan. It led to multiple hospital visits, including a 2am emergency in Edinburgh during what was supposed to be a holiday away. We talk honestly about what it was like to sit with that level of fear while already completely depleted.

We talk about:

• the decision to try again after miscarriage and what that actually looked like for us
• trying to conceive after loss without the pressure of tracking
• getting pregnant on the first try again and the emotional weight of that first positive test
• Hyperemesis Gravidarum (HG): what it actually is and why it's nothing like morning sickness
• navigating hospital visits and medication battles in Spain while severely dehydrated
• fighting to get the right HG prescription when doctors wouldn't prescribe it
• subchorionic hematoma: what it is and how we navigated the fear of it
• four weeks of daily bleeding and learning to sit with uncertainty
• pregnancy complications and chronic illness / CRPS (more in the next episode)

This episode is for anyone who's been through pregnancy loss and is wondering what comes after, or anyone in the thick of a complicated first trimester who needs to feel less alone in it.

Chapters

• 00:00 Introduction and big news
• 03:30 The decision to try again after loss
• 08:00 Trying again without the pressure of tracking
• 12:00 The first positive test and how this pregnancy felt different
• 17:47 Hyperemesis Gravidarum begins (week 5)
• 21:39 Marcus in the US and surviving on neighbours' help
• 24:00 Hospital in Ibiza: dehydration and the medication battle
• 28:47 Scotland and finally getting the right HG medication
• 32:13 Week 14: the bleeding starts
• 35:51 Subchorionic hematoma: what it is and what happened
• 47:49 The emotional weight of a complicated pregnancy
• 50:10 The scan that brought us peace
• 53:34 Grieving the pregnancy you imagined

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.

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

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

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.

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.

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

or https://www.instagram.com/manoukdebijl/


If this episode resonates, please leave a comment and I will get back to you asap!

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!

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 interprets pain signals (and why two people with the same injury can feel completely different levels of pain)
• Why emotions are your body's biggest "danger signal" — and what happens when you ignore them for too long
• The difference between somatic work and therapy (and why bodywork matters just as much as talk therapy)
• What actually happens during a personalized somatic retreat in Ibiza (spoiler: it's not all breathwork and meditation — there's also really good food)
• How Marcus went from thinking psychologists were "voodoo" to understanding energy work, nervous system regulation, and why Eline sometimes shakes her hands like she's flicking water off them
• Why your lower back pain might not be about your posture at all
• How to support a partner doing deep healing work (even if you're not doing it yourself)

This conversation gets real about burnout, chronic illness, the bucket of emotions we all carry, and why your body is way smarter than you think.

If you've been stuck in chronic pain, fatigue, or illness for years and nothing's worked... this might be the missing piece.

Want to learn more about somatic work or book a free 30-minute call about the retreat? DM me on Instagram @thespooniescommunity — I'd love to chat.

Chapters:

00:00 Introduction: Marcus learns what somatic work actually is

08:04 The brain's response to pain and emotions
12:02 Emotions as energy in motion
13:42 Emotional release and chronic conditions
19:03 Tapping into the wisdom of the body
24:59 Integration and long-term impact of somatic work
33:02 What happens during a personalized somatic retreat
38:33 Connection with the universe (and why Marcus was skeptical)