Move It or Lose It | Episode 135

Guest: Jen Weaver from My Spoonie Sisters
Host: Kathy Chester
Air Date: July 30, 2025

Overview

In this heartfelt episode, host Kathy Chester welcomes Jen Weaver, founder of the “My Spoonie Sisters” community and podcast, for an honest, funny, and moving conversation about living with chronic illness, building supportive communities, and the ups and downs of both advocacy and personal health. Together, they explore how chronic illness shapes identity, the importance of finding your people, and the power of sharing real—sometimes messy—experiences.

Main Discussion Points and Insights

1. Jen’s Journey: Diagnosis and Community Creation

• Jen’s Origin Story: Diagnosed with rheumatoid arthritis in 2012, Jen’s chronic illness journey changed her life path dramatically (01:51).
• The Power of Peer Connections: Jen connected with Chelsea (host of “My Immune System Hates Me” podcast) and other patients, leading her to build an Instagram community, which evolved into “My Spoonie Sisters” podcast after noticing a gap when Chelsea stepped back (02:22–03:02).
• Facing Fears: Starting a podcast and running a community was “intimidating and scary,” but, says Jen, “we don’t talk enough about how scary it can be when you start something like this you’ve never done before” (03:11).

2. Podcasting, Vulnerability, and Growth

• Evolving Approach: Began the podcast bi-weekly; transitioned to weekly episodes due to community demand, while balancing family and personal wellbeing, including summer breaks (06:41–07:12).
• Learning from Doctors: Interviewing doctors was “intimidating” but enlightening. Jen noticed, “They’re just like the rest of us,” and sometimes even have chronic conditions themselves (05:19–05:47).

3. The Value and Evolution of Support Groups

• From RA to Chronic Illness: Jen expanded her support group’s focus from only rheumatoid arthritis to all chronic illnesses for inclusivity (09:31–09:50).
• Format and Activities: Meetings are mainly monthly, offer check-ins, themed presentations (e.g., “spring clean your life” for spring, making Valentine’s cards together in February), and focus heavily on mindset (10:18–11:59).
• Dreams of Connection: Jen dreams of a women’s chronic illness getaway, but “everyone I know lives so far away” (12:09–12:24).

4. Navigating Life with Chronic Illness

• Difficult Diagnoses: Jen’s early experiences included a doctor who was unhelpful, delaying her diagnosis: “I saw him for a year before I—okay, I’m done. I’m firing you. Went to someone else” (14:48–14:55).
• Finding the Right Fit: Both Jen and Kathy endorse firing doctors if they’re not supportive or don’t listen, emphasizing patient agency (15:04–15:33, 40:45–41:15).
• Adapting Treatment: Jen’s journey involved trying various medications, grappling with side effects, and an extremely rare allergic reaction (TNF-inhibitor-induced pustular psoriasis): “Picture, as my PCP said, a burn from the inside out” (18:35–18:57).

5. Personal Growth and Gratitude

• Finding Meaning: Despite her hardships, Jen says, “As much as I hate this crap… I wouldn’t take it away and I wouldn’t change it. I think it’s made me a better person” (20:16).
• Empathy and Perspective: Jen now looks at people differently; she observes their gait and mobility, recognizing the invisible struggles people face (21:10–21:31).
• Good Days and Bad Days: Chronic illness is unpredictable—some days are “normal” and others are incapacitating, a fact often misunderstood by outsiders (22:03–22:38).

6. Mental Health and Support

• Permission to Grieve—but not forever: “I understand wanting to mourn your life and grieve for what you expected... but whatever you do, put a time limit on it” (23:32–23:48).
• The Importance of Support: Support groups and online communities help avoid getting “stuck” in grief and isolation (23:53–24:51).

7. The “Spoonie” Identity

• Origin of Spoon Theory: Jen’s group bonded over spoon theory and created viral “spoon toss” videos to share energy and solidarity (25:59–26:44).
• Inclusivity: While “Spoonie Sisters” began as a female-focused space, Jen now includes all genders and adapts the term accordingly (27:07–27:37).
• Flexible, Fun Community: Sign-ups are open; scheduling adapts to the community’s needs, and Jen wants to grow to bi-monthly meetings (28:35–28:39).

8. Biggest Dreams and Community Impact

• Goals: Jen’s primary goal is to support the newly diagnosed: “We were scared to death, we didn’t understand half the terms… It’s a scary place to be” (29:19–29:31).
• Wisdom Sharing: She values mutual support between longtime patients and newcomers, exchanging practical tips and emotional strength (29:50–30:58).

9. Real Talk: When Things Feel Impossible

• Navigating Dark Times: Methotrexate side effects and disease flares led Jen to lean hard on her community: “Can I cry for a little while guys? Can I vent?” (31:18–32:15).
• Impostor Syndrome: Both Jen and Kathy admit struggling with self-doubt as advocates but stress that “everyone else is probably feeling the same” (32:16–33:14).

10. Authenticity, Humor, and Collaboration

• Keeping It Real: Both guests emphasize authenticity—the need to share unglamorous moments, not just highlight reels (33:30–34:09).
• Humor as Survival: Jen loves collaborating on funny “spoonie” skits: “If we can’t laugh at ourselves… oh my gosh” (34:54–35:04).
• Growth Beyond Expectations: Jen never expected her community to grow so large and sustain itself for years (35:46–36:28).

11. Breaking Down Competition in Advocacy

• Collaboration Over Competition: Both lament the “mean girls” vibe that sometimes arises among advocates and stress the importance of collaboration: “There’s room for all of us, and [we should] be supporting each other and cheering each other on” (37:25–37:32).

Notable Quotes & Memorable Moments

• “We laughed a little about our Pokemon cards and how we’re just collecting our autoimmune stuff like Pokemon cards.” — Kathy Chester (01:19)
• “I was collecting sisters, I was collecting friends… why don’t we call this my Spoonie sisters?” — Jen Weaver (03:02)
• “I don’t think we talk enough about how, how scary it can be when you start doing a venture like this you’ve never done before.” — Jen Weaver (03:22)
• “You’re allergic to your TNF inhibitor. This is pustular psoriasis. It’s a 1.1 percent chance…” — Jen’s rheumatologist (18:35)
• “[Chronic illness] made me a better person. I wouldn’t take it away and I wouldn’t change it.” — Jen Weaver (20:16)
• “Don’t get stuck there… Whatever you do, put a time limit on [grieving].” — Jen Weaver (23:32–23:46)
• “It’s okay to fire your doctor. …The one thing I want people to take away… it’s okay.” — Jen Weaver (41:00–41:09)
• “We are all here to support you. There’s a huge community of us. We are going to pick you up… even if it’s virtually, we’re going to link arms with you.” — Jen Weaver (40:13)
• “Collaboration is so important. There’s room for all of us, and [we should] be supporting each other and cheering each other on.” — Jen Weaver (37:32)

Key Timestamps for Major Segments

| Timestamp | Segment/Topic | |:-------------:|:--------------------------------------------------------| | 01:19–03:06 | Jen’s first diagnosis, inspiration for Spoonie Sisters | | 03:11–03:29 | Talking about starting and fears of a new podcast | | 05:19–05:47 | Insights from interviewing doctors as a patient advocate | | 09:31–09:59 | Evolution of the support group to all chronic illnesses | | 14:48–15:33 | Firing a doctor and the importance of patient agency | | 16:43–19:41 | Jen’s medication journey and rare side effects | | 20:05–21:12 | Reflection on growth, empathy, and changed perspective | | 22:03–23:43 | Invisible symptoms and unpredictability of chronic illness| | 23:32–23:53 | On grieving and moving forward—setting a time limit | | 25:59–26:44 | Origin of the Spoon Theory activities + community name | | 29:11–30:58 | Goals for helping newly diagnosed; wisdom sharing | | 31:18–32:15 | Honest discussion of dark times; power of support | | 32:16–33:14 | Impostor syndrome in advocacy work | | 33:30–34:19 | Authenticity in managing image/fatigue on social media | | 34:54–35:04 | The necessity of humor | | 37:25–37:32 | Collaboration over competition among advocates | | 40:13–41:15 | Reassuring the newly diagnosed: you are not alone | | 41:00–41:09 | The mantra: It’s okay to fire your doctor |

Tone and Style

The episode is open, relatable, occasionally irreverent, and marked by both candor and humor. The “sisterhood” dynamic shines through in mutual support, authenticity, and shared laughter—even about difficult topics.

How to Connect

Jen’s “My Spoonie Sisters” community is open to all chronic illness warriors; support group info is available through her Instagram Stories. Collaboration is encouraged; both Kathy and Jen warmly invite listeners to join and grow together!