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Invisibly Ill
Lucky number 9
In this episode, we welcome our second-ever guest, Tamlin, who shares his experience of living with an undiagnosed chronic illness for nearly a decade. From frustrating medical encounters to bizarre symptoms and a never-ending search for answers, he opens up about the challenges of navigating an illness that doctors can’t quite pin down. The conversation touches on chronic fatigue, dietary experiments, the emotional toll of invisible illness, and the absurdity of some medical advice ("Just lift your hands above your head!"). Of course, there are plenty of laughs along the way, including unexpected skydiving mishaps and the chaos of explaining your health to strangers.
Topics Covered:
- Tamlin’s journey with an undiagnosed chronic condition and years of inconclusive medical tests.
- How chronic fatigue syndrome became the most likely explanation—without ever being a definitive diagnosis.
- The rollercoaster of symptoms, from extreme fatigue to unpredictable food triggers.
- The frustration of hearing “everything’s normal” when you know something is wrong.
- Why medical gaslighting is so common, especially when there’s no clear diagnosis.
- How lifestyle changes (like diet, pacing, and work flexibility) have helped manage symptoms.
- The struggle of working while chronically ill and making career adjustments for health.
- The importance of acceptance—learning to live with uncertainty while still pushing for answers.
- Skydiving disasters, ice bath therapy, and the unexpected perks of feeling a little bit drunk without alcohol.
Notable Moments:
💬 "You should try raising your hands above your head." – A doctor’s actual advice to Tamlin about his symptoms.
💬 "I have to be okay with my foot never getting better… waiting for it to heal is exhausting." – Laura on the mental shift of accepting chronic conditions.
💬 "I just love pizza, but my body does not." – Tamlin on the constant battle with dietary restrictions.
💬 "You don't need a diagnosis to know something is wrong with your body." – A reminder that self-advocacy matters.
Takeaways:
🔹 Not having a diagnosis doesn’t mean your illness isn’t real.
🔹 Chronic illness often means trial and error—what works for one person may not work for another.
🔹 The medical system doesn’t always have answers, but that doesn’t mean you should stop looking.
🔹 Sometimes, accepting a new “normal” is necessary for moving forward.
🔹 Laughter helps—even when you’re dealing with frustrating and scary health challenges.
Get in Touch:
We’d love to hear from you! If this episode resonated with you, email us at invisiblyillpodcast@gmail.com.
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8. PCOS and the camel's stone...
53:23||Season 1, Ep. 8This episode is a big one—we have our first-ever guest! Jen’s sister, Tori, joins the pod to share her experience living with polycystic ovary syndrome (PCOS), a hormonal condition that affects 1 in 10 women worldwide. She talks about her journey from a delayed diagnosis at 16 to navigating fertility, lifestyle changes, and the often frustrating lack of medical support. The conversation also takes some hilarious detours into awkward sex ed memories, birth control, and the surprising history of contraception (hint: it involves camels).Topics Covered:What PCOS actually is and why it’s so hard to diagnose.The impact of insulin resistance on hormones, weight, and energy levels.How PCOS affects periods (or in Tori’s case, how it meant never having them).The struggle of getting doctors to take women’s hormone health seriously.Being told to “just lose weight” as a cure-all (we all relate 🙄).The emotional and medical challenges of trying to conceive with PCOS.How pregnancy acted as a hormonal reset for Tori (and why it’s not a cure).Sex ed horror stories—cartoon anatomy, banana condoms, and school assemblies of doom.Why birth control research for men never took off (spoiler: they didn’t like the side effects).Notable Moments:💬 "You have a pearl bracelet around your ovaries." – The bizarre way doctors described Tori’s PCOS diagnosis.💬 "I was told to lose weight at 16… when I was already super active and healthy." – The start of a lifelong battle with diet culture.💬 "I’ve had four periods before the age of 30… and one of them got me pregnant." – The wild unpredictability of PCOS.💬 "Wait… people used to put STONES in camels to stop them getting pregnant?!" – Maeghan, fully horrified.Takeaways:🔹 PCOS is way more common than people think, but it’s still widely misunderstood.🔹 Weight stigma in medicine is real, and being told to “just lose weight” is not a treatment plan.🔹 Hormonal health impacts so much more than fertility—it affects energy, mood, skin, and long-term health risks.🔹 Women’s health issues are often dismissed, but advocating for yourself is key.🔹 There is a huge community of people living with PCOS—support and resources are out there!Get in Touch:We’d love to hear from you! If this episode resonated with you, email us at invisiblyillpodcast@gmail.com.Coming up next: More deep dives into hormone health, plus another guest in the works! Stay tuned!
7. That escalated quickly...!
42:39||Season 1, Ep. 7Maeghan is back after a rough few weeks, and she has big updates—she’s officially a married woman! But while wedding bliss was in full swing, so were some worrying new health symptoms. In this episode, she opens up about her recent health scare, the frustrating process of getting answers, and the possibility of chronic fatigue syndrome. Meanwhile, Jen and Laura also have their own medical dramas, including a hospital stay and a mystery foot condition that no one seems to know how to fix. They reflect on how hard it is to trust your body, the guilt of asking for help, and the universal struggle of knowing when to rest.Topics Covered:Maeghan's wedding recap—the highs, the headaches, and why she’s glad the photos turned out great.Months of worsening symptoms: dizziness, brain fog, fatigue, and the frustrating quest for a diagnosis.The reality of chronic fatigue syndrome—what it means, and why it’s so hard to diagnose.Jen’s scary hospital trip after ignoring symptoms (oops) and why she should have gone way sooner.Laura’s mystery foot lump and the confusion over how to actually treat it.The classic chronic illness trap: pushing through symptoms until your body forces you to stop.Why we’re all so bad at taking our own advice when it comes to resting.Exciting podcast updates—our first-ever guest is coming next episode!Notable Moments:💬 "I felt dramatic… even though I literally couldn't breathe." – Maeghan on second-guessing whether she really needed urgent care.💬 "I thought it was just my lymphedema flaring up… until my entire boob turned purple." – Jen on waiting way too long to get checked.💬 "It was a stressful wedding, but at least I married my wife. That part was perfect." – Maeghan on the bittersweet mix of joy and exhaustion on her big day.💬 "You had a temperature, were lying on the kitchen floor, and still didn’t go to the hospital?!?!" – Laura, exasperated at Jen’s choices.Takeaways:🔹 Chronic fatigue syndrome is real, but getting a diagnosis is incredibly frustrating.🔹 Sometimes, pushing through illness isn’t strength—it’s just denial (and we’re all guilty of it).🔹 Asking for help is hard, but ignoring symptoms is way worse.🔹 Our partners and loved ones see our struggles more clearly than we do.🔹 The podcast is growing! We’re welcoming our first guest next time to talk about PCOS and hormones.Get in Touch:We’d love to hear from you! If this episode resonated with you, email us at invisiblyillpodcast@gmail.com.Next episode: We’re bringing in our first guest to chat about PCOS, hormones, and chronic illness. Stay tuned!
6. Niggles, nips and new beginnings
43:30||Season 1, Ep. 6Jen and Laura kick off the new year with a catch-up episode—without Maeghan, who is (ironically) out sick. They chat about post-holiday health updates, new fitness challenges, and the frustration of ongoing medical mysteries. Laura shares her latest struggles with nerve damage in her foot, while Jen talks about managing lymphedema and her big swimming goals for 2024. They also reflect on the challenges of navigating chronic illness while trying to live a "normal" life, plus some fun tangents on Christmas, weddings, and nostalgic school memories.Topics Covered:Jen’s latest mammogram results and the annual stress of waiting for the all-clear.How warmer weather is worsening Jen’s lymphedema and her plans to combat it.Laura’s mysterious foot swelling and nerve issues—leading to a confusing diagnosis.The reality of medical waitlists and trying to push for answers when doctors say "just wait."Setting fitness goals as a way to regain control—Jen is training for a 4.5km ocean swim!Reflections on Maeghan’s wedding and the surreal moment of meeting podcast listeners in real life.Laura’s failed attempt to “break up” with her therapist and why she’s sticking with it (for now).The emotional toll of watching a loved one struggle with chronic pain and feeling powerless to help.Upcoming travel plans, including Laura’s long-awaited trip to New Orleans.Fun tangents: school TV trolleys, overhead projectors, and Megan’s American flag duty.Notable Moments:💬 "Therapy should have a beginning, middle, and end… and apparently, I’m not at the end yet." – Laura on trying (and failing) to end therapy.💬 "We’ve got rid of the cancer. Now it’s up to you to do the living." – Jen on learning to move forward post-diagnosis.💬 "If I start dancing, take me home." – Laura’s rule for drinking, which her boyfriend completely forgot at Maeghan’s wedding.💬 "It was surreal—people I’d never met knew all about my life because of the podcast!" – Jen on the unexpected experience of meeting listeners.Takeaways:🔹 The wait for medical answers can be agonizing, but self-advocacy is key.🔹 Finding ways to move your body (when possible) can help maintain a sense of control.🔹 Therapy isn’t just about fixing things—it’s about fully processing what’s happened.🔹 Being the partner of someone in chronic pain comes with its own set of struggles.🔹 Nostalgia hits hard when talking about old-school classroom tech!Get in Touch:We’d love to hear from you! If this episode resonated with you, email us at invisiblyillpodcast@gmail.com.2024 is going to be a big year—stay tuned for themed episodes, guest chats, and maybe even a "partners takeover" episode (if we can convince them to do it). See you next time!
5. Filling the cup
39:41||Season 1, Ep. 5In this episode, Laura, Jen, and Maeghan reflect on what small daily habits make a difference in their well-being, discussing the concept of "three non-negotiables" to help manage chronic illness and mental health. They also dive into the complexities of healthcare systems, the challenges of accessing proper treatment, and the frustrating reality of needing financial resources to get the care you deserve. With Christmas around the corner, they also share their holiday traditions and plans—including Laura’s heated pool dreams, Maeghan's "Nomad Christmas," and Jen’s seafood-themed UK holiday.Topics Covered:The importance of identifying three daily "non-negotiables" to maintain physical and mental well-being.How movement—whether spin class, walking, or swimming—helps reclaim a sense of control over your body.Laura’s journey back to swimming after past trauma and how it's impacted her healing.The harsh reality of healthcare disparities—why getting proper treatment often comes down to money.The frustrating experience of waiting for public healthcare in New Zealand, and the difficult choices patients have to make.How illness impacts relationships, from romantic partners to friends who step up when you need them most.Christmas traditions, from seafood feasts to chaotic "orphan" gatherings and the great Die Hard holiday movie debate.Notable Moments:💬 "I feel like some people walk and they get mindfulness. I need to power it out. Spin has been so good for that." – Laura on rediscovering movement.💬 "If exercise were a drug, we'd be prescribing it." – Jen on how fitness impacts cancer recovery.💬 "I only got better because I could afford an external nutritionist. What about the people who can't?" – Maeghan on the financial barriers to getting proper healthcare.Takeaways:🔹 Establishing small daily non-negotiables can help create stability in the chaos of chronic illness.🔹 Movement—when possible—can be empowering and transformative for both body and mind.🔹 Access to proper healthcare should not be dependent on financial resources, yet often it is.🔹 Support systems, whether friends, partners, or family, are crucial when navigating illness.🔹 Die Hard may or may not be a Christmas movie, but Love Actually and Spirited are definite holiday favorites.Get in Touch:We’d love to hear from you! If this episode resonated with you, email us at invisiblyillpodcast@gmail.com.Taking a holiday break—see you in 2024, when Maeghan will officially be a married woman! Merry Christmas, Happy New Year, and may your stockings be fuller than your medical bills.
4. Where's the beef?
35:53||Season 1, Ep. 4In this episode, Laura, Jen, and Maeghan discuss frustrating (and sometimes hilariously absurd) conversations with doctors, the realities of maintaining health with chronic illness, and how weight and exercise are often presented as a "fix-all" solution—even when the messaging is less than helpful. They also explore the impact of illness on relationships, the lack of support for partners of people with chronic conditions, and how small gestures from loved ones make all the difference.Topics Covered:Laura’s latest MRI results and what they mean for her long-term health.How her surgeon compared her back to a well-marbled steak (yes, really).The fine line between helpful medical advice and unhelpful weight-related commentary.How illness impacts relationships—whether it’s relying on friends, partners, or family.Jen and Maeghan reflect on how chronic illness can create guilt, frustration, and unexpected gratitude for the people who stick by you.The lack of support for caregivers and partners of people with serious illnesses.Notable Moments:💬 “So… your back is like a good steak, but structurally, that’s not great.” – Laura’s surgeon, trying (and failing?) to explain body mechanics.💬 “If exercise were a drug, we’d be prescribing it.” – Jen on the undeniable health benefits of movement.💬 “I had a panic attack about not owning a recliner… because if I relapsed, where would I sleep?” – Maeghan on the ways chronic illness rewires your brain.💬 “I can’t fix your back, but I can bring you food.” – The importance of small acts of care when supporting loved ones with chronic illness.Takeaways:🔹 The way doctors frame conversations about weight and health makes all the difference.🔹 Chronic illness doesn’t just affect the person who is sick—it deeply impacts loved ones, too.🔹 Support can come in many forms, from emotional reassurance to pre-portioned meals when cooking is too hard.Get in Touch:We’d love to hear from you! If this episode resonated with you, email us at invisiblyillpodcast@gmail.com.If you’re enjoying the podcast, please leave us a review. And if you’re in Belgium, Germany, or the US… hi! We see you!
3. Not dead yet
37:38||Season 1, Ep. 3In this episode, Laura, Jen, and Maeghan have an honest conversation about the fear of relapse, the mental toll of chronic illness, and the struggle of being perceived as "better" when you're still dealing with long-term effects. They open up about how illness reshapes identity, the frustrations of advocating for yourself in the medical system, and the emotional weight of grieving the life you thought you'd have.Topics Covered:Jen reflects on life post-cancer, managing chemical menopause, and the struggle of people assuming she’s "back to normal."Laura discusses the ongoing battle with pain, recovery setbacks, and how chronic illness forces you to be hyper-aware of your body.Maeghan shares the challenges of dealing with medical gaslighting, the anger that comes with watching others live "normal" lives, and the guilt of feeling that way.The fear of relapse—knowing how hard recovery is and wondering if you have the energy to go through it all again.The emotional toll of losing the future you envisioned for yourself and adjusting to a new reality.Notable Moments:💬 “You think you're fine… until you start to feel better. And then you realize just how sick you actually were.” – Laura on how illness slowly becomes your new normal.💬 “I was more afraid of chemo than I was of dying.” – Jen on the toll of cancer treatment.💬 “I had a panic attack about not owning a recliner… because if I relapsed, where would I sleep?” – Maeghan on how chronic illness changes the way you think about even the smallest things.Takeaways:🔹 Just because someone looks better doesn’t mean they aren’t still struggling.🔹 Chronic illness comes with waves of grief—not just for your health, but for the version of yourself you thought you'd be.🔹 Talking about difficult emotions—like anger, fear, and resentment—helps break the isolation of being invisibly ill.Get in Touch:We’d love to hear from you! If this episode resonated with you, email us at invisiblyillpodcast@gmail.com.This is a space for crying, laughing, and fart jokes—because sometimes, you just have to keep it real.
2. Progress isn't linear
36:17||Season 1, Ep. 2In this episode, Laura, Jen, and Maeghan catch up on what's changed since their last conversation—spoiler alert: a lot. From unexpected surgeries and frustrating medical encounters to the ongoing challenges of chronic illness, they dive into the emotional and physical ups and downs of managing invisible conditions.Topics Covered:Laura’s unexpected back surgery and the slow recovery processMaeghan's struggles with doctors dismissing her concerns and the frustrations of navigating the healthcare systemJen’s journey balancing work, recovery, and pushing her limits post-cancerThe mental toll of chronic illness and how it impacts daily lifeFinding the balance between pushing forward and knowing when to restNotable Moments:💬 “I overdid it in Pilates, and then I sneezed… and messed up my back.” – Laura on the moment that led to her latest surgery.💬 “You need to gain another 60kgs to qualify.” – Maeghan on the absurdity of weight-based medical criteria.💬 “I can do burpees… slowly.” – Jen reflecting on post-cancer fitness and recovery.Takeaways:🔹 The importance of advocating for yourself in the medical system.🔹 How chronic illness can feel like a never-ending cycle of setbacks and small wins.🔹 Finding humor and support in the chaos of being invisibly ill.Get in Touch:We’d love to hear from you! If you relate to our stories or want to share your own, email us at invisiblyillpodcast@gmail.com.Enjoyed this episode? Let us know! And if you didn’t… well, we’re too sick to care. 😉
1. Pilot
48:22||Season 1, Ep. 1Welcome to the first episode of Invisibly Ill! Join Laura, Jen, and Maeghan—three thirty-something women from New Zealand—as they navigate the complexities of living with invisible illnesses. In this candid conversation, they share their personal journeys, the challenges of being chronically ill while "not looking sick," and their motivation for starting this podcast.In This Episode:What is Invisibly Ill? The purpose of the podcast and the importance of raising awareness for invisible illnesses.Meet the Hosts:Jen's Story: Diagnosed with triple-positive breast cancer, Jen discusses her ongoing journey with treatment, side effects, and the mental health impact of a life-threatening diagnosis.Laura's Story: Chronic back pain following a car accident, multiple surgeries, and a surprising injury caused by a simple sneeze.Maeghan's Story: The frustrating search for answers with undiagnosed gastrointestinal issues, living with severe GERD, and navigating the medical system.The Common Struggles: Despite different diagnoses, the hosts reflect on the universal challenges they face—being disbelieved, struggling with treatment, and coping with the mental and physical toll of their conditions.The Power of Support: Why asking for and accepting help is crucial, and how friendship has played a vital role in their journeys.Unexpected Moments of Humor: From radioactive "Hulk mode" to the hazards of sneezing, the group shares some of the absurd and unexpectedly funny moments of chronic illness.Society's Reactions to Invisible Illness: The frustration of hearing "but you don’t look sick," managing others' emotional responses to their diagnoses, and the struggle for proper medical treatment.Key Takeaways:Chronic illness is more than what meets the eye—just because someone "looks fine" doesn’t mean they aren’t struggling.Finding a support system can make all the difference.Medical professionals don't always have the answers, and self-advocacy is essential.Humor can be a powerful coping mechanism.Connect With Us:Follow us on Instagram: @InvisiblyIllPodcastShare your story or topic suggestions: Email us at invisiblyillpodcast@gmail.comSubscribe and leave a review to help others find the show!Thank you for tuning in to our first episode! We’re excited to build a community where those with invisible illnesses feel seen, heard, and supported. Stay tuned for future episodes diving deeper into the realities of chronic illness!