Welcome to a new episode of A Friend for the Long Haul - A Long Covid Podcast! Claire Jones, co-founder of Sista Creatives Rising and creator of Musings of a Black Disabled Elder, is a repeat guest of the pod. She has developed a five-part framework for navigating life's chaos: Clarity, Awareness, Presence, Acceptance, and Gratitude. In this episode, Claire and I talk about what it means to build a life when illness, disability, trauma, grief, and change knock us sideways.

We talk about:

• Learning to live and resist within your capacity, and why your contribution doesn't have to look like anyone else's

• Claire's experience with cancer and how it changed her relationship with self-love, joy, and worthiness

• Why acceptance isn't the same thing as forgiveness

• Grieving the life you thought you would have while still making room for a different kind of joy

• The cognitive cost of constantly trying to manage other people's experience of you

• Living a COVID-conscious life without allowing other people's perceptions to define what makes a life rich or fulfilling

• "Getting ahead of life before life gets ahead of you”

Claire reminds us that life will always contain suffering, disruption, and uncertainty. The goal isn't to become so grounded that nothing ever knocks us off course, it's to develop a way back to ourselves.

Read Sista Creatives Rising and Musings of a Black Disabled Elder on Substack.

A Friend for the Long Haul is a podcast about chronic illness, disability, Long COVID, community, and the messy business of building meaningful lives when our bodies and circumstances don't cooperate with the plans we made.

If this conversation resonates with you, subscribe/follow the podcast and share it with someone who might need it.

#LongCOVID #ChronicIllness #Disability #DisabilityCommunity #ChronicIllnessCommunity #Acceptance #Grief #SelfLove #SistaCreativesRising

Find Claire and Amaranthia's Instagram account for Sista Creatives Rising here: https://www.instagram.com/sistacreativesrising

and their website is: https://www.sistacreativesrising.com/ Follow A Friend for the Long Haul - A Long Covid Podcast on Instagram: https://www.instagram.com/afriendforthelonghaulpodcast/

A Friend for the Long Haul is a one disabled woman produced podcast. If you'd like to support my work, you can:

• Check out my shop, full of snarky long covid and chronic illness shirts, mugs, and bags. Any proceeds from the shop go right back to the podcast, or community care/mutual aid.
• I have an Amazon gift registry focused on back to school and things that would help at home. We're a family of 6 neurodivergent and disabled baddies. All 4 kids are heading back to school next week, and any help is always appreciated.
• Venmo me at: afriend4thelonghaul
• Or, just listen, review, and share this podcast!

Thank you!

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/

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/ 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. Thanks!