Why Stories Matter in the Fight for Long COVID Awareness with Charlie McCone - A Friend for the Long Haul Podcast

Why Stories Matter in the Fight for Long COVID Awareness with Charlie McCone - A Friend for the Long Haul Podcast

In this episode of A Friend for the Long Haul - A Long COVID Podcast, I'm joined by Charlie McCone. Charlie is a Long COVID advocate, contributor to The Sick Times, member of the Patient-Led Research Collaborative, someone whose work has become deeply woven into the LC community, and another guest I was convinced was too cool to come on the show. Charlie and I talk about what happens when your life is changed by an illness that most people still don't understand, if they even think it's real. We explore why Long COVID has been so difficult for the public to grasp, why facts alone don't seem to be enough to create change, and the role storytelling plays in helping communities be seen, believed, and understood. We also discuss the concept of "hypocognition," which is what happens when society lacks the frameworks to recognize a problem, and how this shows up in the experiences of people living with chronic illness and disability, as well as disability culture, patient-led research, the power of first-person narratives, how communities organize, and what keeps people speaking up when progress feels so very painfully slow. We also chat about Charlie's friendship with Alice Wong, and the lessons he learned from her about advocacy and life. You don't have to live with Long COVID to understand how it feels to try to find purpose when your life takes an unexpected turn. But if you do have LC, are navigating another chronic illness or disability, you're supporting a loved one, or trying to better understand what millions of people have experienced over the last 6 years, I think we took a really good look at how people telling the truth about what they've lived through is a powerful way to drive change. Charlie, thanks for your work and for joining me! Find Charlie on Instagram: https://www.instagram.com/loscharlos/ Bravely, on X: https://x.com/loscharlos?lang=en On Threads: https://www.threads.com/@loscharlos His amazing piece, Alice Wong showed us DIsability Justice makes our advocacy stronger: https://thesicktimes.org/2026/04/10/alice-wong-showed-us-disability-justice-makes-our-advocacy-stronger/ Find Beth on Instagram: https://www.instagram.com/afriendforthelonghaulpodcast/ Treat yourself to some Long COVID merch in my shop and support this podcast and mutual aid: https://www.bonfire.com/store/a-friend-for-the-long-haul/ Read my Substack: https://f4lh.substack.com/

Dreams vs. Realities: Entrepreneurship, Chronic Illness, and Disability with Katrina Dreamer

What happens when the life you planned collides with the reality of chronic illness or disability? Is it still possible to build something meaningful, even if your energy, body, and definition of success have changed? In this episode of A Friend for the Long Haul, I'm joined by entrepreneur and creator Katrina from https://www.katrinadreamer.com/ [https://www.katrinadreamer.com/] for an honest conversation about what it really looks like to pursue your dreams while living with chronic illness. Together, we explore the tension between ambition and acceptance, the pressure to "keep up," and the ways disability forces us to rethink productivity, purpose, and success. We talk openly about the grief of letting go of old expectations, the creativity required to build a business around fluctuating health, and why sustainable entrepreneurship often looks very different from the stories we're told. Whether you're considering starting a business, navigating a career after illness, or simply trying to figure out what comes next, this conversation offers reassurance that there isn't one "right" path forward. Sometimes the dream doesn't disappear, it just evolves. We Discuss * The realities of entrepreneurship with chronic illness and disability * Redefining success when your body has new limits * Letting go of productivity myths and unrealistic expectations * Building a business that supports your health instead of sacrificing it * Navigating uncertainty, identity shifts, and changing dreams * Why being flexible isn't giving up, it's a strategy for sustainability If you've ever wondered whether your dreams still have a place after illness, I hope this conversation reminds you that they do. They may look different than you imagined, but they can still be deeply meaningful. Connect with Katrina Visit Katrina at KatrinaDreamer.com and follow their work to learn more about their experience. On Instagram: https://www.instagram.com/katrinadreamer Co-founder of Covid Safe Colorado: https://www.instagram.com/covidsafecolorado/ The Covid Logs Co-Editor: https://www.instagram.com/thecovidlogs/ Writer of Chaotic Good and the Banned Bookmobile webtoon: https://www.instagram.com/chaoticgoodcomic/ Connect with Beth On Instagram: https://www.instagram.com/afriendforthelonghaulpodcast/ On Substack: https://f4lh.substack.com/ If this episode resonated with you, I'd love for you to subscribe, leave a review, or share it with someone who's learning to build a life that works with their body, not against it. I'm trying to learn that living well with chronic illness isn't about doing more. If you'd like to support my work, you can Venmo me at afriend4thelonghaul, you can check out my merch shop for Long Covid and chronic illness merch : https://www.bonfire.com/store/a-friend-for-the-long-haul or you can help my family of 6 disabled folks survive summer at home together by sending us a little something from my Amazon wishlist. [https://www.amazon.com/registries/gl/guest-view/YLQ6XEWA29IZ?ref_=cm_sw_r_cp_ud_ggr-subnav-share_DBQQ8A5TEKM7MJYPK9RJ_1] Thanks!

Foraging with ME (Myalgic Encephalomyelitis) with April Thompson of Chronic Market

Welcome to Season 4, Episode 11 of A Friend for the Long Haul - A Long Covid Podcast! For Week 3 of Camp Long Haul, we're exploring The Great Accessible Outdoors and this conversation changed the way I look at the plants growing outside my front door. In this episode, I got connected with April Thompson, who has had ME(/CFS - I'm adding it because a lot of people search for it when looking for help) for most of her adult life, an urban forager, artist, and founder of the Chronic Market [https://chronic.market/], where you can buy "beautiful, one-of-a-kind items and unique services offered by artists, artisans and entrepeneurs around the world suffering from ME/CFS, a debilitating chronic illness. Living with ME/CFS for over 20 years, April has found a way to stay connected to nature, curiosity, and creativity by being curious what's growing around her. After a series of technology mishaps (including a waterlogged phone and a last-minute change of plans), April gives us an impromptu tour of the edible and medicinal plants she can find just steps from her home in Washington, DC. This was a really sweet introduction to urban foraging. We talk about: Urban foraging for beginners Accessible ways to connect with nature while living with chronic illness ME, pacing, and finding meaningful hobbies within your spoons Dandelions, plantain, lamb's quarters, mugwort, wood sorrel, amaranth, mallow, and more The nutritional benefits of wild foods About Camp Long Haul: Camp Long Haul is a low-key virtual summer camp experience for people living with Long COVID, ME/CFS, dysautonomia, chronic illness, disability, neurodivergence, and anyone whose life doesn't fit the traditional summer adventure story. Every activity is optional, asynchronous-friendly, and designed with pacing in mind. Connect with April: Instagram: @chronicmarketplace Instagram: @prillytee https://aprilwrites.com/ Connect with Beth on Instagram @afriendforthelonghaulpodcast Get Camp Long Haul Merch on my Bonfire shop: https://www.bonfire.com/store/a-friend-for-the-long-haul/ [https://www.bonfire.com/store/a-friend-for-the-long-haul/ ] Support this podcast by sharing, liking, and subscribing! If you're so inclined, I also have a summer wishlist on Amazon for our super queer, neurodivergent family [https://www.amazon.com/registries/gl/guest-view/YLQ6XEWA29IZ?ref_=cm_sw_r_cp_ud_ggr-subnav-share_ZH6SQ9AR5CAPSNJ33CEE]. #LongCOVID #MECFS #ChronicIllness #DisabilityCommunity #UrbanForaging #Foraging #AccessibleOutdoors #NatureConnection #Pacing #Dysautonomia #MCAS #ChronicIllnessLife #DisabilityAwareness #CampLongHaul #AFriendForTheLongHaul #SpoonieLife #Gardening #CommunityCare #AccessibleAdventure #ChronicMarket

Introducing Camp Long Haul - A Virtual Summer Camp for Spoonies

Welcome to S04E10 of A Friend for the Long Haul - A Long Covid Podcast! I accidentally invented a virtual summer camp for Spoonies after having a small existential crisis in my Instagram stories. In this episode, I talk about why summer can feel surprisingly painful for chronically ill and neurodivergent people, especially parents, caregivers, and anyone grieving the life they thought they’d have. Between Long COVID, autism, ADHD, sensory overwhelm, heat intolerance, and the logistical nightmare of trying to “summer normally,” I realized what I actually need is community, ritual, silliness, softness, and something to look forward to. Enter: Camp Long Haul. A fully optional, low-pressure, asynchronous virtual camp for spoonie folks featuring themed weeks, crafts, scavenger hunts, campfire chats, hydration flotillas, ghost stories, pacing tips, and absolutely zero requirement to keep up or explain your absence. Lurkers welcome, goblin mode accepted, no assholes. Grab your flotilla and let's camp! Key topics * Why summer can feel isolating and emotionally difficult for chronically ill and disabled people * Parenting in a fully neurodivergent household while managing chronic illness * Creating accessible community spaces for Spoonies and Long Haulers * The structure and philosophy behind Camp Long Haul * Low-pressure participation and asynchronous community building * Themed weeks, campfire chats, scavenger hunts, crafts, and low-spoon activities * Pacing, overstimulation, burnout, and adapting expectations * Friendship, belonging, ritual, and chosen family in disability communities * Community rules around respect, consent, and psychological safety * Reclaiming fun, softness, and creativity after trauma and illness resources * Whose Land — Whose Land * Instagram account for Ray and Stormi (pet enrichment & disability-friendly dog training): Ray and Stormi Instagram [https://www.instagram.com/rayandstormi/] and TikTok: Ray and Stormi TikTok [https://www.tiktok.com/@rayandstormi] * Embracing Enchantment — Embracing Enchantment Podcast [https://podcasts.apple.com/us/podcast/embracing-enchantment/id1551234567?utm_source=chatgpt.com] Support this Podcast I'm a disabled lady doing this whole podcast on my own. If you would like to support the podcast, please subscribe and follow, engage with my posts, comment, and share episodes that resonate with you! Those are the biggest ways you can support me and my work. If you'd like to get some of my merch, check out my Bonfire shop! All proceeds are funneled back into the podcast for tech or used for community care and mutual aid. I don't keep the proceeds. I do have an Amazon gift registry that I update for the summer each year. [https://www.amazon.com/registries/gl/guest-view/YLQ6XEWA29IZ?ref_=cm_sw_r_cp_ud_ggr-subnav-share_YF4CJCAGGP9Z6VKA0XN1] We are a blended family of 6 and all of us have disabilities. Some of our kids have complex medical issues as well as intellectual and physical disabilities, and we're increasingly neurodivergent. Summers get emotional, kids get boring, and the parents work from home without a "village" or the luxury of childcare. This summer gift registry keeps us afloat. --- If you'd like to be a guest on the show or suggest a guest, please use this form! https://forms.gle/q9wiV6mQ4G3SMBu99 Thank you for listening to and supporting A Friend for the Long Haul! Keywords Long COVID, Spoonie community, chronic illness podcast, neurodivergent adults, autism, ADHD, virtual summer camp, disability community, accessible community, chronic illness support, CPTSD, pacing, burnout, neurodivergent parenting, accessible joy, online community, disability advocacy, mental health, summer loneliness, chronic illness isolation, low spoon activities, asynchronous community, virtual support group, EDS, chronic fatigue, inclusive spaces

The Spoonie Plant Guide: Low-Maintenance Houseplants for Spoonies ft. Megan Wages of Fancy Free Nursery

Welcome to S04E09 of A Friend for the Long Haul - A Long Covid Podcast. This episode is part two of my catch-up chat with Megan Wages, my second-ever podcast guest, first wave Covid long hauler, co-owner of Fancy Free Nursery in Tampa, Florida, and the guest of last week's S04E08, Running a Small Business as a Covid Long Hauler with Megan Wages. In this episode, we talk about plants! I've become a plant lady in the last 6 years, and I've noticed that my plants tend to tell me a lot about how I'm feeling. First I noticed that the downstairs ones were fine. The upstairs ones were so sad. Turns out there's a reason for that. In Part 2 of this two-part episode, we get into the actual plant content. Specifically: what should a spoonie with limited energy, unpredictable symptoms, and a complicated relationship with energy actually grow? The answer is: more than you think. Megan walks through her spoonie-approved plant list, propagation tips, why your Calathea's attitude is not your fault, and the thing fluoride in tap water does to your spider plant. She also answers listener questions live, talks about soils, orchids in wine decanters, and the surprisingly emotional experience of a plant that keeps coming back no matter how badly you've neglected it. There's also a spider plant baby giveaway. Alysia won. She lives in a basement apartment and this is probably the perfect plant. I wish I had the spoons to get to the post office and send it to her. One day, my love!!! I promise! IN THIS EPISODE: * Snake plants and ZZ plants: the spoonie ride-or-dies * ZZ Raven: the black plant for the goth baddies * Pothos propagation and the hormone tip nobody talks about * Why I am a self-described prop lifter * The "teats" moment (you'll know it when you hear it) * Ripsalis: if spaghetti became a plant * Spider plants and the fluoride problem * Burgundy rubber tree, Tineke, and the fiddle leaf fig blue sky tip * Orchids in wine decanters: the lab aesthetic * Alocasia: pretty, finicky, spider mite magnets * Why Walmart plants are a gamble (the fish department story) * LECA: the water-to-soil bridge method * Your plant's health as a mirror for your mental health * Listener questions answered * Spider plant baby giveaway 🌱 LISTENER QUESTIONS ANSWERED: * Tara's 20-year fiddle leaf fig: how to help her thrive * Monstera propagating in water: when and how to move to soil * Can you bring an orchid back to life? * Best plants for a low-light basement apartment You can find Megan Fancy Free on Insta Megan on TikTok A Friend for the Long Haul * A Friend for the Long Haul on Insta and TikTok * Substack: https://f4lh.substack.com/ * The podcast playlist on Spotify Support this Podcast I'm a disabled lady doing this whole podcast on my own. If you would like to support the podcast, please subscribe and follow, engage with my posts, comment, and share episodes that resonate with you! Those are the biggest ways you can support me and my work. If you'd like to get some of my merch, check out my Bonfire shop [https://www.bonfire.com/store/a-friend-for-the-long-haul/?utm_source=copy_link&utm_medium=store_page_share&utm_campaign=a-friend-for-the-long-haul&utm_content=default]! All proceeds are funneled back into the podcast for tech or used for community care and mutual aid. I don't keep the proceeds. I do have an Amazon gift registry that update for the summer [https://www.amazon.com/registries/gl/guest-view/YLQ6XEWA29IZ?ref_=cm_sw_r_cp_ud_ggr-subnav-share_3K2W0KDX481DDNCA4KF0] each year. We are a blended family of 6 and all of us have disabilities. Some of our kids have complex medical issues as well as intellectual and physical disabilities, and we're increasingly neurodivergent. Summers get emotional, kids get boring, and the parents work from home without a "village" or the luxury of childcare. This summer gift registry keeps us afloat. --- If you'd like to be a guest on the show or suggest a guest, please use this form! https://forms.gle/q9wiV6mQ4G3SMBu99 [https://forms.gle/q9wiV6mQ4G3SMBu99] Thank you for listening to and supporting A Friend for the Long Haul!