Day 1 - Courtney Whitney - They Just Weren’t Looking Hard Enough: A Sjögren’s Girl’s Guide from the Girl Who Gets It

Day 1 - Courtney Whitney - They Just Weren’t Looking Hard Enough: A Sjögren’s Girl’s Guide from the Girl Who Gets It

"When you don't look sick, you're not seen as someone who needs help... you get questioned, doubted, dismissed, and discharged. Over time, you start to do those exact same things to yourself."In this raw and unfiltered patient story, Courtney Whitney, creator of Sjögren’s Girl’s Guide, takes you through her three-decade journey of being gaslit, dismissed, and misdiagnosed before finally finding answers. She shares the profound relief of being believed and the power of finding a community that says, "I get it."Watch this session to feel seen, to release the weight you've been carrying, and to remember that you were never invisible—they just weren't looking hard enough.EPISODE IN A GLANCE00:00 The Two Words That Connect Us All03:32 The Danger of Doubt: How Being 'Too Pretty to Be Sick' Erases You05:11 A Lifetime of Symptoms: From Childhood Dismissal to a Doctor's Unbelievable Suggestion09:13 The Breakthrough: Finding the Doctor Who Finally Listened14:42 Starting Over: The Power and Chaos of Turning to the Internet for Answers15:25 Finding Community: The Moment 'If You Know, You Know' Changed Everything20:27 The 'Bra' Exercise: A Powerful Practice for Letting Go of What You Carry24:03 A Hawaiian Tradition: How to Practice Forgiveness and Self-Love on the Hardest Days25:34 Final Message: You Were Never InvisibleABOUT COURTNEY WHITNEYCourtney Whitney is the creator of Sjögren’s Girl’s Guide, a digital platform dedicated to empowering and educating the autoimmune and chronic illness community through storytelling, science, and humor. Diagnosed with Sjögren’s disease at age 31 after over three decades of unanswered symptoms, Courtney has turned her lived experience into advocacy—building a rapidly growing support network for those who often go unheard. She brings warmth, grit, and deep relatability to every word, balancing medical insight with raw honesty and a touch of dark humor.CONNECT WITH COURTNEY WHITNEYInstagram → https://www.instagram.com/sjogrensgirlsguideFacebook → https://www.facebook.com/sjogrensgirlsguideYouTube → https://www.youtube.com/@SjogrensGirlsGuideABOUT THE VIRTUAL SJOGREN'S SUMMITThe Virtual Sjögren's Summit is an annual patient-led online event dedicated to providing accessible, high-quality education and fostering a supportive global community for everyone touched by Sjögren's. Our mission is to build networks of support, knowledge, and hope.

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Episoder(25)

Day 3 - Kara Wada, MD - Beyond Medication: The 3-Visit Immune Reset

Day 3 - Kara Wada, MD - Beyond Medication: The 3-Visit Immune Reset

What if you could achieve the results of 3-5 years of traditional allergy shots in just three visits over two months? For Sjogren's patients stuck in a cycle of inflammation, where allergies fuel auto...

19 Jul 202533min

Day 3 - Kara Wada, MD & Janet Steins - Roundtable: "The Clinical Trial Journey: Patient Perspectives & Insights"

Day 3 - Kara Wada, MD & Janet Steins - Roundtable: "The Clinical Trial Journey: Patient Perspectives & Insights"

What is it really like to be in a clinical trial for a new Sjogren's medication? What are the tests like? What's the time commitment? And is it worth it?In this unique and candid roundtable discussion...

19 Jul 202554min

Day 3 - Lilly Stairs - The Power of Patient Communities & Network Advocacy

Day 3 - Lilly Stairs - The Power of Patient Communities & Network Advocacy

What does ambition look like when you're living with a chronic condition? How do you build a vibrant life and career when your body requires you to work smarter, not harder?In this candid and inspirin...

19 Jul 202525min

Day 3 - Delia Chiaramonte, MD - Caring for Someone You Love Without Losing Yourself

Day 3 - Delia Chiaramonte, MD - Caring for Someone You Love Without Losing Yourself

Caregivers often struggle to remain empathetic and compassionate without becoming depleted and overwhelmed, leading to guilt, resentment, and burnout. But it doesn't have to be this way.In this deeply...

19 Jul 202526min

Day 3 - Kristina Kelly, BCPA - Hack Your Healthcare_ Top 10 Tips for Tough Talks with Docs

Day 3 - Kristina Kelly, BCPA - Hack Your Healthcare_ Top 10 Tips for Tough Talks with Docs

Do you ever leave a doctor's appointment feeling rushed, unheard, or more confused than when you arrived? The emotional toll of dismissal and confusing medical jargon can leave Sjogren's patients feel...

19 Jul 202523min

Day 3 - Bexi Lobo, PhD - Networking and Advocacy - Making a Difference Together

Day 3 - Bexi Lobo, PhD - Networking and Advocacy - Making a Difference Together

Do you ever leave a doctor's appointment feeling rushed, unheard, or more confused than when you arrived? The emotional toll of dismissal and confusing medical jargon can leave Sjogren's patients feel...

19 Jul 202523min

Day 3 - Jillian Rigert, DMD, MD, ACC, TIPC- The Importance of Compassionate, Trauma-Informed Care To Cultivate Healing

Day 3 - Jillian Rigert, DMD, MD, ACC, TIPC- The Importance of Compassionate, Trauma-Informed Care To Cultivate Healing

Autoimmune conditions and their symptoms are often exacerbated by trauma and stress. While we are often taught to internalize our emotions and stress, this can lead to self-criticism that only fuels t...

19 Jul 202525min

Day 3 - Bianca Campbell - Intergenerational Trauma AND Resilience for Stress Reduction

Day 3 - Bianca Campbell - Intergenerational Trauma AND Resilience for Stress Reduction

What if the patient you see as "difficult" is actually traumatized? For many living with Sjogren's, years of medical dismissal, normal lab results despite debilitating symptoms, and being told "it's a...

19 Jul 202524min

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