Calling In Sick

This week on Calling in Sick, I'm sitting down with Cheryl Crow — occupational therapist, founder of Arthritis Life, host of the Arthritis Life podcast, creator of the Rheum to THRIVE course, and someone who has been navigating rheumatoid arthritis for 23+ years. We’re talking all about how we’ve navigated processing life with chronic illness — from the control piece, the acceptance piece and the struggles between. So if you’ve ever struggled with processing chronic illness, you’ll love this episode.

We're diving into:

💊 What it actually looks like to cycle through flare-ups and treatment

🧠 Why high achievers can be particularly “bad” at chronic illness — the "A+ student" trap of believing you can find the perfect system to solve your body

🩺 What occupational therapy actually is — "a psychologist having a baby with a physical therapist" — and why this community desperately needs to know about it

🚌 Our favorite lessons from chronic illness therapy — from the passengers on the bus metaphor, to the ACT framework and the reframes that have truly changed things for us

🙅 Our thoughts on how ableism is innately baked into wellness culture

☕ Our top 3 tips for finding joy while living a life with chronic illness — micro-joys, duvet days, and seeing rest for more than a reward

xx, Alex

💬 Comment: What is your relationship with the word "acceptance" when it comes to your chronic illness?

TIMESTAMPS

Intro:

00:00:00 Welcome back to Calling in Sick!

NAVIGATING CHRONIC ILLNESS WITH CHERYL CROW:

00:00:36 Cheryl Crow’s Diagnosis Journey & Early Symptoms

00:09:36 Treatment Cycles & Secondary Loss of Response

MENTAL HEALTH & CHRONIC ILLNESS:

00:11:58 Mental Health, Anxiety, & Catastrophizing

00:15:36 Overachiever Mindsets & disease Management

00:23:25 Occupational Therapy vs. Physical Therapy

00:29:30 Acceptance and Commitment Therapy (ACT)

00:34:16 Positive Activity Scheduling & Micro-Joys

NAVIGATING “FEELING BETTER” WITH A CHRONIC ILLNESS:

00:37:05 Facing Ableism & Cultural Assumptions

00:48:40 Finding Transformation & Agency

00:56:03 Rest, Sleep Divas, & Duvet Days

Conclusion:

00:59:53 One Brain Cell Show: Dancing with the Stars (Disney+)

01:01:43 Thank you for listening!

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Stay connected and follow us on socials for more!

• Instagram - https://www.instagram.com/callinginsickpod/

• TikTok - https://www.tiktok.com/@callinginsickpod

• Facebook - https://www.facebook.com/profile.php?id=61558234607568

• Substack - https://substack.com/@callinginsickpod?

Connect with our guest, Cheryl Crow:

• Instagram - https://www.instagram.com/arthritis_life_cheryl/

• TikTok - https://www.tiktok.com/@arthritislife

• YouTube - https://www.youtube.com/c/arthritislife

• Website - https://arthritis.theenthusiasticlife.com/about-cheryl/

Episode Resources

• Kate Bowler, “No Cure for Being Human” - https://link.amazon/B07znkSfA

• Kate Bowler, “Everything Happens for a Reason, and Other Lies I’ve Loved” - https://link.amazon/B0246dY3H

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Produced by: Alexandra Wildeson — https://www.instagram.com/alexandrawildeson/

#RheumatoidArthritis #OccupationalTherapy #ChronicIllness #ACTTherapy #AcceptanceAndCommitmentTherapy #ArthritisLife #CherylCrow #ChronicPain #MedicalGaslighting #BoomAndBust #ChronicIllnessAcceptance #SpoonieLife #InvisibleIllness #Ableism #MicroJoys #DuvetDay #RheumToThrive #AutoimmuneDisease #CallingInSickPodcast #AlexWildeson

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This Wednesday on Calling in Sick, Amanda Berk is back for and we are getting into the systemic conversation underneath everything we talked about on Monday. Why the healthcare system keeps failing women. Where it started. And what is actually being done about it.

We're diving into:

🏛️ The historical roots of the gender health gap — why female bodies were treated as "small men with psychological issues" for decades and what that actually cost us 

👙 "Bikini Medicine" — the term coined in the 1980s for the narrow funding of women's health

🧪 The research disparities that are still costing women their health

💰 Who is actually funding women's health research right now

💡 Our favorite female-led women’s health tech companies changing the game

👥 The Witness Effect — the documented phenomenon where providers offer measurably better care when a second person is present, and why this is one of the most powerful tools in patient advocacy

Asking for help in the healthcare system is not a failure. It is a strategy. 🤍 

xx, Alex 

💬 Comment: What’s YOUR favorite women’s health tech company?! Give them a shoutout in the comments this week!!!

TIMESTAMP:

Intro:

00:00:00 Welcome back to Calling in Sick!

Women's Health & Systemic Failures: 

00:00:12 Historical Roots of the Gender Health Gap + The Origin of "Bikini Medicine"  

00:06:40 Clinical Trial Disparities & Economic Impact 

Funding & Innovation: 

00:10:00 Public vs. Private Sector Funding 

00:13:30 Involving Men in the Conversations around Women’s Health

00:18:24 Private Companies Driving Female-Centric Innovation 

Patient Advocacy & Policy: 

00:24:23 The Witness Effect in Medical Appointments 

00:28:38 Social Justice & Systemic Stigma in Healthcare 

Future Outlook:

00:31:16 What Gives Hope for the Future of Women's Health 

00:36:48 Careers in Healthcare Outside of Becoming a Doctor 

00:37:07 Where to Connect with Amanda Berk & LIORA Health

Conclusion:

00:38:31 Thank you for listening!

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Stay connected and follow us on socials for more!

• Instagram - https://www.instagram.com/callinginsickpod/

• TikTok - https://www.tiktok.com/@callinginsickpod

• Facebook - https://www.facebook.com/profile.php?id=61558234607568

• Substack - https://substack.com/@callinginsickpod?

Connect with our guest, Amanda Berk:

• Instagram - https://www.instagram.com/amanda_berk/

• TikTok - https://www.tiktok.com/@amanda_berk

• LIORA Instagram - https://www.instagram.com/liorahealthadvocates/

• LIORA Website - https://liorahealth.io/

• Substack - https://liorahealth.substack.com/

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Produced by: Alexandra Wildeson — https://www.instagram.com/alexandrawildeson/

#WomensHealth #GenderHealthGap #BikiniMedicine #PatientAdvocacy #ChronicIllness #LioraHealth #MedicalGaslighting #WomensHealthResearch #ClinicalTrials #WitnessEffect #AutoimmuneDisease #POTS #InvisibleIllness #SpoonieLife #WomensHealthTech #HealthcareReform #ChronicIllnessCommunity #PatientEmpowerment #CallingInSickPodcast #AlexWildeson

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This week on Calling in Sick, I'm sitting down with my dear friend Amanda Berk — co-founder and Chief Operating Officer of LIORA Health, dual Master's candidate in Social Work and Public Health at UT Austin, and someone navigating life with chronic migraines, a neurological tick disorder, and Hashimoto's disease. And this conversation is one I think every single person in this community needs to hear. 

We're diving into:

🤝 What patient advocacy actually is

🏥 Why navigating medicine alone is failing us 

😭 Why so many patients leave appointments feeling dismissed

👥 Peer advocacy and the LIORA Health model

📋 Four tips you NEED for your next appointment:

Asking for help in the healthcare system is not a failure. It is a strategy. 🤍 

xx, Alex 

💬 Comment: Have you ever experienced the "car cry" after a doctor's appointment — and what happened?

TIMESTAMP:

Intro:

00:00:00 Welcome back to Calling in Sick!

Patient Advocacy Overview:

00:01:12 Defining Patient Advocacy & The Shift Away from "Solo Healthcare"

00:05:54 Systemic Challenges in Modern Medicine

Working with Advocates:

00:09:58 Finding Third-Party Advocates

00:12:54 Peer Advocacy & LIORA Health's Matching Platform

00:16:58 Intake & Proactive Appointment Preparation

Practical Appointment Tips:

00:19:58 Tip #1: Asking to Record Audio 

00:22:31 Tip #2: Time-Bound Symptom Tracking 

00:25:41 Tip #3: Setting Goals & Top 5 Priority Questions 

00:27:18 Tip #4: Clarifying Next Steps Before Leaving 

LIORA Health & Women's Health Data: 

00:28:43 Embracing Lived Experience & Partnership 

00:32:46 Sending Notes to Providers in Advance

00:36:12 The Story Behind LIORA Health 

00:40:58 Building a Patient Dataset to Close Research Gaps 

00:44:05 Reflections on Navigating the Advocate Role

Conclusion:

00:49:40 One Brain Cell Show: Earle Meets World (Netflix) & The Secret Life of Mormon Wives (Hulu)

00:53:36 Thank you for listening!

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Stay connected and follow us on socials for more!

• Instagram - https://www.instagram.com/callinginsickpod/

• TikTok - https://www.tiktok.com/@callinginsickpod

• Facebook - https://www.facebook.com/profile.php?id=61558234607568

• Substack - https://substack.com/@callinginsickpod?

Connect with our guest, Amanda Berk:

• Instagram - https://www.instagram.com/amanda_berk/

• TikTok - https://www.tiktok.com/@amanda_berk

• LIORA Instagram - https://www.instagram.com/liorahealthadvocates/

• LIORA Website - https://liorahealth.io/

• Substack - https://liorahealth.substack.com/

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Produced by: Alexandra Wildeson — https://www.instagram.com/alexandrawildeson/

#PatientAdvocacy #ChronicIllness #LioraHealth #WomensHealth #MedicalGaslighting #ChronicMigraine #Hashimotos #AutoimmuneDisease #DoctorAppointmentTips #SymptomTracking #ChronicIllnessCommunity #InvisibleIllness #SpoonieLife #HealthcareSystem #PatientEmpowerment #ChronicPain #WomensHealthcare #AppointmentPrep #CallingInSickPodcast #AlexWildeson

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This week on Calling in Sick, Dr. Linda Bluestein is mythbusting the biggest hypermobility and hEDS misconceptions circulating online right now!! Some of these are coming from well-meaning patients. Some are coming from providers who should know better. And some are genuinely dangerous enough that a hypermobility specialist felt the need to set the record straight. 

We're busting:

🚩 "Hypermobility and hEDS don't cause real pain"

🚩 "Hypermobility just means being flexible

🚩 "hEDS is being massively overdiagnosed on social media"

🚩 "A normal genetic test rules out hEDS" 

🚩 "Symptomatic hypermobility always progresses and gets worse"

🚩 "The Beighton score is the definitive diagnostic tool"

 🚩 "Direct-to-consumer genetic tests give you real answers"

And more!!!

 xx, Alex

💬 Comment: Which of these myths have YOU been told?!

TIMESTAMPS:

Intro:

00:00:00 Welcome back to Calling in Sick!

Hypermobility & hEDS Internet Myths:

00:00:22 Myth 1: Hypermobility & hEDS Do Not Cause Pain

00:01:40 Myth 2: Hypermobility Just Means Flexibility, Not a Real Medical Condition

00:03:22 Myth 3: hEDS Is Massively Overdiagnosed on Social Media

00:04:42 Unconscious Daily Accommodations & Pain Self-Management

00:07:55 Myth 4: A Normal Genetic Test Rules Out hEDS

00:08:46 Re-Evaluating hEDS Criteria & Immune System Hypotheses

00:12:12 Myth 5: Symptomatic Hypermobility Always Progresses & Gets Worse

00:15:08 Myth 6: If You Pass the Beighton Score, You're Good

00:17:50 Myth 7: Direct-to-Consumer Genetic Tests Provide Clear Answers

Conclusion:

00:24:11 Thank you for listening!

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Stay connected and follow us on socials for more!

• Instagram - https://www.instagram.com/callinginsickpod/

• TikTok - https://www.tiktok.com/@callinginsickpod

• Facebook - https://www.facebook.com/profile.php?id=61558234607568

Connect with our guest, Dr. Linda Bluestein:

• Instagram, Personal - https://www.instagram.com/hypermobilitymd/

• Facebook - https://www.facebook.com/hypermobilityMD

• Website - https://www.hypermobilitymd.com/

• Podcast - https://www.youtube.com/@BendyBodiesPodcast

• Instagram, Podcast - • Instagram, Personal - https://www.instagram.com/hypermobilitymd/

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Produced by: Alexandra Wildeson — https://www.instagram.com/alexandrawildeson/

Powered by: Just Media House — https://www.justmediahouse.com/

#Hypermobility #hEDS #EhlersDanlosSyndrome #HypermobilityMyths #BendyBodies #DrLindaBluestein #MythBusters #ChronicIllness #ChronicPain #JointHypermobility #BeightonScore #GeneticTesting #MedicalGaslighting #SpoonieLife #InvisibleIllness #ConnectiveTissueDisorder #HypermobilitySpectrumDisorder #CallingInSickPodcast #AlexWildeson

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This week on Calling in Sick, I'm sitting down with THE Dr. Linda Bluestein (!!!). She’s a board-certified physician, hypermobility specialist, host of the Bendy Bodies podcast, and someone who didn't get her own hEDS diagnosis until her 50s. 

We're diving into:

🦴 What hypermobility actually is — and the four types most people have never heard of (peripheral, localized, generalized, and historical)

🩺 Dr. Bluestein's personal journey — from teenage ballerina with chronic injuries to anesthesiologist to hypermobility specialist, and the Tarlov cyst surgery that finally connected all the dots

⏱️ The 17-year literature lag — why it takes nearly two decades for published research to reach clinical practice, and the cost to patients NOW

🧠 Central sensitization — why pain begets pain in hypermobile bodies, and how the nervous system gets rewired over time

🛠️ The MENS-PMMS framework — Dr. Bluestein's approach to managing hypermobility (try these TODAY!!)

💊 Dr. Bluestein’s TOP 3 high-impact tools (!!!) — LDN, vitamin D optimization, and magnesium

🔮 The new EDS criteria — what's changing, what it means for the community, and Dr. Bluestein's role in the International Consortium on EDS 

xx,

💬 Comment: What is something YOU are constantly doing to make yourself more comfortable throughout the day that you don’t even think about?!

TIMESTAMPS:

Intro:

00:00:00 Welcome back to Calling in Sick!

Hypermobility, Pain & Dr. Bluestein’s Diagnosis Story:

00:01:34 Defining Joint Hypermobility & Muscle Guarding

00:04:45 Types of Hypermobility: Peripheral, Localized, Generalized & Historical

00:07:05 Dr. Bluestein's Story: Ballet, Early Illness, and Diagnosis 

Why Patients Struggle Getting a Diagnosis:

00:17:08 Connecting Connective Tissue Disorders to Systemic Symptoms 00:19:30 Why Hypermobility Is Misdiagnosed

00:28:15 Why patients see normal labs and normal imaging but have symptoms +  the Role of Systemic Interconnectedness

00:29:46 The Spectrum of Hypermobility: From Dancers to Bedbound Patients 

00:33:00 The Psychological Toll of Medical Gaslighting 

How to Manage Hypermobility:

00:35:36 Proactive Management: The MEN'S PMMS Framework 

00:37:03 Building Momentum with the 10% Rule 

00:39:53 Reapproaching Movement & Avoiding Kinesiophobia 

00:42:06 Overcoming Pain Catastrophization & Reclaiming Power 

00:44:18 Reclaiming Agency Through Micro-Joys 

00:48:05 High-Impact Interventions: Low-Dose Naltrexone (LDN) 

00:50:10 Optimizing Vitamin D & Magnesium Levels 

00:53:28 Central Sensitization, Neuroinflammation & Unique Pain Wiring

The 411 on the New EDS Criteria:

01:03:43 Insights on the New EDS Criteria & Community Advocacy 

Conclusion: 

01:09:48 One Brain Cell Show: Slow Horses (Apple TV+) & Clarkson's Farm (Prime Video)

01:14:27 Thank you for listening!

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Stay connected and follow us on socials for more!

• Instagram - https://www.instagram.com/callinginsickpod/

• TikTok - https://www.tiktok.com/@callinginsickpod

• Facebook - https://www.facebook.com/profile.php?id=61558234607568

Connect with our guest, Dr. Linda Bluestein:

• Instagram, Personal - https://www.instagram.com/hypermobilitymd/

• Facebook - https://www.facebook.com/hypermobilityMD

• Website - https://www.hypermobilitymd.com/

• Podcast - https://www.youtube.com/@BendyBodiesPodcast

• Instagram, Podcast - • Instagram, Personal - https://www.instagram.com/hypermobilitymd/

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Produced by: Alexandra Wildeson — https://www.instagram.com/alexandrawildeson/

Powered by: Just Media House — https://www.justmediahouse.com/

#Hypermobility #hEDS #EhlersDanlosSyndrome #JointHypermobility #BendyBodies #DrLindaBluestein #ChronicIllness #ChronicPain #POTS #MCAS #CentralSensitization #LowDoseNaltrexone #MedicalGaslighting #SpoonieLife #InvisibleIllness #ConnectiveTissueDisorder #TarlovCyst #CallingInSickPodcast #AlexWildeson

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This week on Calling in Sick, #1 NYT-Best Selling author, Sheila Masterson (The Poison Daughter), is back to talk about the ONE thing I think every chronically ill person who has ever tried to build a career, meet a deadline, or show up for their work on a bad pain day desperately needs to hear. 

Tune in to hear about:

🤕 What a bad migraine day actually looks like for Sheila — the reality of standard narcotics not working, the GI piece, and what Sheila describes as "endurance training for pain" 

🏢 Corporate America vs. entrepreneurship with chronic illness — why traditional workplaces are rarely built for disabled employees, and what the trade-offs of self-employment actually look like

📚 Ableism in entertainment — why traditional publishing timelines are inherently ableist, what "crash publishing" costs a chronically ill author, and how Sheila vetted agents and publishers by asking directly how they advocate for disabled clients

🗓️ The project manager approach to chronic illness — how Sheila builds buffer time into every deadline, runs three part-time assistants for seamless cross-coverage, and plans brain-heavy tasks around her hormonal cycle

🥄 Spoon theory in practice — what low-spoon vs. high-spoon tasks actually look like in a writing career, and how to protect your best energy for what matters most

✍️ Unlocking creativity during a flare — dictating voice notes, editing instead of drafting, using audiobooks to get into a receptive headspace without overstimulation

🎬 Adapting TV sets for chronic illness — the quiet rooms, audio relay services, and dynamic scheduling she is building into the Hulu adaptation of The Poison Daughter.

xx, Alex

💬 Comment: What is your number one accommodation or hack that has made building a career with chronic illness more sustainable?

TIMESTAMPS:

Intro:

00:00:00 Welcome back to Calling in Sick!

Navigating Chronic Illness & Careers: 

00:01:00 What a Bad Migraine Day Looks Like & how Sheila manages them

00:07:40 Corporate America vs. Chronic Illness

00:11:05 Managing Teams & Delegating Tasks with a chronic illness

00:18:00 Stress, Healthcare & Self-Advocacy

00:30:00 Low Spoon vs. High Spoon Tasks

00:32:45 Unlocking Creativity During Bad Flare Days 

00:36:40 Adapting TV Sets for Chronic Illness 

00:40:40 Disability Representation in the Entertainment World

Conclusion:

00:45:00 Thank you for listening!

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Stay connected and follow us on socials for more!

• Instagram - https://www.instagram.com/callinginsickpod/

• TikTok - https://www.tiktok.com/@callinginsickpod

• Facebook - https://www.facebook.com/profile.php?id=61558234607568

Connect with our guest, Sheila Masterson:

• Instagram - https://www.instagram.com/sheilareadsandwrites/?hl=en

• Newsletter & Bonus Chapter - https://sheilamasterson.com/

• Buy The Poison Daughter - https://link.amazon/B02AN6S1O

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Produced by: Alexandra Wildeson — https://www.instagram.com/alexandrawildeson/

#ChronicIllness #ChronicMigraine #SheilaMasterson #ThePoisonDaughter #ChronicIllnessEntrepreneur #SpoonieLife #SpoonTheory #ChronicIllnessCareer #InvisibleIllness #ChronicPain #AbleismInPublishing #DisabilityRepresentation #ChronicIllnessBusiness #WorkingWithChronicIllness #EnergyBudgeting #CallingInSickPodcast #AlexWildeson

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This week on Calling in Sick, I'm sitting down with Sheila Masterson — #1 New York Times bestselling author of The Poison Daughter, a fantasy-romance novel that has taken the chronic illness and romantasy communities completely by storm. And this is the conversation nobody has had with her yet. 

This week, we're diving into:

😤 Subverting the "sick girl" trope — why Sheila built Harlow as angry, spicy, violent, and unapologetically flawed — and why chronically ill people deserve to see themselves as hot, disabled, and complex in fiction

🔥 Feminine rage & romantasy — how The Poison Daughter captures collective frustration around expectations placed on women to absorb toxic behavior, mask their pain, and smooth over discomfort 

🧠 The reality of masking — why Sheila chose first-person present tense to capture the claustrophobic mental load of a pain flare, and how she dictated scenes via voice notes during active migraine attacks to get the language exactly right 

💔 Reader response — the overwhelming reaction from the chronic illness and complex trauma communities who finally felt seen in fiction

🎬 The TV adaptation — Sheila's role as executive producer on the upcoming Hulu series, and her commitment to protecting the show's authentic chronic illness representation 

And come back on Wednesday to hear about how Sheila has navigated balancing a creative career with chronic illness.

xx, Alex 

💬 Comment: Has a book, show, or character ever made you feel truly seen in your chronic illness experience — and which one?

TIMESTAMPS:

Intro:

00:00:00 Welcome back to Calling in Sick!

Chronic Illness Representation in Media (The Poison Daughter):

00:00:38 Subverting the "Sick Girl" Trope in Media

00:02:44 Feminine Rage, Accountability & Romantasy

00:08:49 Pain Flares, Masking & Writing in First-Person 

00:15:06 Reader Reactions & The Complex Trauma Connection 

00:23:28 Self-Identity, Personal Growth & Living with Chronic Illness

00:34:52 Safe Spaces for Anger & the Romantasy Dynamic 

00:41:58 Navigating Chronic Illness in Relationships & Intimacy

00:51:31 Media Impact & Executive Producing the TV Series

Conclusion:

01:01:06 One Brain Cell Show: Ride or Die, Furious (Hulu) & Chad Powers (Hulu)

01:07:38 Where to Find Sheila's Books & Newsletter

01:08:48 Thank you for listening!

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Stay connected and follow us on socials for more!

• Instagram - https://www.instagram.com/callinginsickpod/

• TikTok - https://www.tiktok.com/@callinginsickpod

• Facebook - https://www.facebook.com/profile.php?id=61558234607568

Connect with our guest, Sheila Masterson:

• Instagram - https://www.instagram.com/sheilareadsandwrites/?hl=en

• Newsletter & Bonus Chapter - https://sheilamasterson.com/

• Buy The Poison Daughter - https://link.amazon/B02AN6S1O

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Produced by: Alexandra Wildeson — https://www.instagram.com/alexandrawildeson/

#ChronicIllness #ChronicMigraine #SheilaMasterson #ThePoisonDaughter #Romantasy #BookTok #ChronicIllnessRepresentation #FeminineRage #SickGirlInFiction #InvisibleIllness #SpoonieLife #ChronicPain #FantasyRomance #BookTokChronicIllness #Masking #ChronicIllnessCommunity #TVAdaptation #CallingInSickPodcast #AlexWildeson

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This week on Calling in Sick, we are RE-RELEASING a fan favorite!!! I was joined by Cortney Gensemer, PhD - scientist, chronic illness patient and mom - to talk about the questions so many of us with chronic illness are quietly worried about. Motherhood. And obviously, as someone who is pregnant, I had a LOT of questions for Cort!!

So this week, we're diving into:

🤰 What pregnancy actually looked like with hEDS, POTS & MCAS

🏥 Why MFM appointments are every chronic illness woman’s favorite appointment ever

👶 The genetic question everyone is afraid to ask: will my child have my chronic illness?

💼 How Cortney found a sustainable balance for work, health and motherhood

🩺 How chronic illness actually prepares you to be an incredible mother

And we also answer YOUR questions! Including:

🤍 How to manage burnout as a parent with CFS

🤍 What a genetic mutation in COL5A1 or COL5A2 actually means for cEDS

🤍 How to ask for help when your body just can't keep up

xx, 

Alex

💬 Comment: What's the one question about chronic illness and motherhood you've been afraid to ask?

TIMESTAMPS

Intro:

00:00:00 Welcome back to Calling in Sick!

Motherhood and Chronic Illness:

00:02:29 Courtney's motherhood & postpartum journey

00:08:00 Why chronic illness patients love their Maternal-Fetal Medicine (MFM) specialists 

00:14:15 What sharing our pregnancies publicly was like

00:17:15 The concerns about passing down chronic illness conditions

00:23:42 How pregnancy has shifted our mindsets towards life with chronic illness

00:25:29 Chronic illness parenting hacks

00:31:12 What navigating a medical crisis for your child is like, while YOU are managing YOUR chronic illness

00:39:20 How Cortney has juggled her career, motherhood and chronic illness

Audience Q&A:

00:43:25 Chronic Illness Burnout Tips 

00:48:22 Pain medication and juggling the long-term risks

00:50:33 MFM and Preconception Planning

00:56:06 Genetics and EDS

Conclusion:

01:00:11 Thank you for listening!

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Stay connected and follow us on socials for more!

• Instagram - https://www.instagram.com/callinginsickpod/

• TikTok - https://www.tiktok.com/@callinginsickpod

• Facebook - https://www.facebook.com/profile.php?id=61558234607568

• Substack - https://substack.com/@callinginsickpod?

Connect with our guest: Cortney Gensemer!

• Instagram - https://www.instagram.com/cortdoesscience/

• Substack - https://cortneygensemer.substack.com/

• Website - cortneygensemer.com

🔗 If you have a complex chronic illness, check out Chronicle Connect and patient participation opportunities at chroniclebio.com 

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Produced by: Alexandra Wildeson — https://www.instagram.com/alexandrawildeson/

#ChronicIllnessResearch #hEDS #EhlersDanlosSyndrome #POTS #MCAS #MastCellActivation #ChronicIllness #SpoonieLife #InvisibleIllness #AutoimmuneDisease #PatientAdvocacy #CortDoesScience #ChronicleBio #ChronicIllnessCommunity #MedicalGaslighting #PatientScientist #Omics #ChronicPain #CallingInSickPodcast #AlexWildeson

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This week on Calling in Sick, we are RE-RELEASING a fan favorite!!! I got to sit down with someone who lives this chronic illness life from both sides of the equation… Cortney Gensemer, PhD is a scientist at ChronicleBio, a patient with hypermobile Ehlers-Danlos Syndrome, MCAS, POTS, and adrenal insufficiency, and the creator behind @CortDoesScience.

We dive into:

🔬 What it's actually like to study your own disease

🩺 The challenges of specialized care and diagnosis for the chronic illness population

🧬 How "omics" research is what’s connecting the dots across chronic illnesses to move beyond labels and actually find answers

💊 Our hot takes on if: diagnostic labels 100% helpful, wellness culture is actually toxic, patients are more informed than their providers, and so much more

xx, 

Alex

💬 Comment: What's one thing you wish your doctor actually understood about your condition?

TIMESTAMPS

Intro:

00:00:00 Welcome back to Calling in Sick!

00:04:48 Alex’s Picks of the Week (Pain patches & Pregnancy pillow picks)

My chat with Cortney Gensemer:

00:02:50 Cortney's journey: From athlete to patient to scientist

00:09:36 What researching her own disease did for her identity and diagnosis journey

00:23:25 What being a patient and scientist is like

00:26:23 Starting @CortDoesScience" on social media

00:30:34 Developing patient-science training and lab accessibility

00:37:07 Transitioning to biotech at ChronicleBio

Chronic Illness Hot Takes:

00:47:04 Are diagnostic labels meaningless?

00:49:51 Should patients read primary literature?

00:54:41 Is it the doctor's fault if they don't understand your condition?

00:56:47 Is social media harmful or helpful for our community?

01:01:51 How should we be evaluating the wellness industry?

Conclusion:

01:14:04 One Brain Cell Show: Love is Blind, Working Moms, I'm Sorry

01:18:20 Where to connect with Cortney Gensemer

01:20:01 Thank you for listening!

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Stay connected and follow us on socials for more!

• Instagram - https://www.instagram.com/callinginsickpod/

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Connect with our guest: Cortney Gensemer!

• Instagram - https://www.instagram.com/cortdoesscience/

• Substack - https://cortneygensemer.substack.com/

• Website - cortneygensemer.com

🔗 If you have a complex chronic illness, check out Chronicle Connect and patient participation opportunities at chroniclebio.com 

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Alex’s Picks of the Week:

Things that have been helping my chronic illness — and now my first trimester too!!

✨Salonpas Lidocaine Pain Patches — https://amzn.to/3P6rAON

✨Momcozy Pregnancy Pillow — https://amzn.to/4nEIlgZ

#ChronicIllnessResearch #hEDS #EhlersDanlosSyndrome #POTS #MCAS #MastCellActivation #ChronicIllness #SpoonieLife #InvisibleIllness #AutoimmuneDisease #PatientAdvocacy #CortDoesScience #ChronicleBio #ChronicIllnessCommunity #MedicalGaslighting #PatientScientist #Omics #ChronicPain #CallingInSickPodcast #AlexWildeson

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This Wednesday on Calling in Sick, Dr. Alexis Barbut is back and we are debunking the most common autoimmune myths circulating online right now. Some of these are coming from wellness culture, some from well-meaning friends and family, and some are genuinely dangerous enough that a rheumatologist felt the need to set the record straight!!

We're debunking:

🚩 "If you have autoimmune disease you're immunocompromised"

If you’ve seen these things online… tune in to hear the truth!!! 🤍

xx, Alex

💬 Comment: Which of these myths have YOU been told?? And who told it to you… a doctor, a friend, or the internet?!

TIMESTAMPS:

Intro:

00:00:00 Welcome back to this week’s convos with our guest, Dr. Alexis Barbut

Debunking Autoimmunity Misconceptions:

00:00:59 Is autoimmune disease just inflammation, and not that serious?

00:02:42 Does a positive ANA mean you have lupus, even if you feel okay?

00:05:06 Are autoimmunity and autonomic dysfunction the same thing?

00:08:59 Should you be scared to go on a biologic for autoimmune treatment?

00:16:25 Are you still immunocompromised if you have an autoimmune diagnosis but are doing well, and take no medication?

00:19:59 Should you avoid pregnancy while on ALL autoimmune disease medication?

00:20:33 Does having an autoimmune disease mean you must do IVF?

00:23:33 Do you need to worry about pregnancy planning if you are in remission?

00:24:48 Will your children definitely inherit your autoimmune disease?

Conclusion:

00:30:07 Thank you for listening!

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Stay connected and follow us on socials for more!

• Instagram - https://www.instagram.com/callinginsickpod/

• TikTok - https://www.tiktok.com/@callinginsickpod

• Facebook - https://www.facebook.com/profile.php?id=61558234607568

• Substack - https://substack.com/@callinginsickpod?

Connect with our guest, Dr. Alexis Barbut:

• Instagram - https://www.instagram.com/dralexis_md/

• TikTok - https://www.tiktok.com/@dralexis_md

• Facebook - https://www.facebook.com/profile.php?id=61579331585029&mibextid=wwXIfr&rdid=PtEzsgsks2uCgtjR&share_url=https%3A%2F%2Fwww.facebook.com%2Fshare%2F1YGSvh42E6%2F%3Fmibextid%3DwwXIfr%26utm_source%3Dig%26utm_medium%3Dsocial%26utm_content%3Dlink_in_bio#

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#AutoimmuneMythBusting #Rheumatology #AutoimmuneDisease #LupusMyths #ANATest #Biologics #WellnessCulture #ChronicIllness #POTS #AutoimmunePregnancy #ReproductiveRheumatology #MedicalMyths #DrAlexisBarbut #SpoonieLife #InvisibleIllness #ChronicIllnessFacts #WomensHealth #AutoimmuneAwareness #CallingInSickPodcast #AlexWildeson

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