Inside FLARE: The Art of Endo

Art, Advocacy, and Medical Gaslighting | Chelsea's Endometriosis Story

In this episode of Inside FLARE, I sit down with Chelsea Hardesty, patient advocate, artist, mother, founder of Getting the Better of Endo [https://linktr.ee/betterofendo?utm_source=ig&utm_medium=social&utm_content=link_in_bio&fbclid=PAZXh0bgNhZW0CMTEAc3J0YwZhcHBfaWQMMjU2MjgxMDQwNTU4AAGnNL6ch6Xs4ZrXRo2CjdhvHsrU4hDeacBed5y665Gq0n_AgXknwfdgg4Kpdj0_aem_t9GSlUQ9VMR2UMYEx3kE2w], and one of the first people who truly understood the vision behind FLARE when I shared it with the world. Chelsea shares the reality of living with symptoms for sixteen years before finally being diagnosed with endometriosis after one doctor completely missed disease that another specialist found just weeks later covering her bowel, bladder, and colon. We talk about what happens when years of dismissal slowly make you question your own body, your instincts, and your reality. This conversation goes far beyond diagnosis. We dive into the emotional and physical complexity of living with chronic illness, from multiple surgeries and high-risk pregnancies to pelvic floor dysfunction, chronic pain, and the long-term impact medical gaslighting can have on mental health. What makes Chelsea’s story especially powerful is the way she transformed her experience into action. Through advocacy work on Capitol Hill, poetry, community storytelling, and traveling art installations at state capitols, she is helping reshape how people understand endometriosis and why awareness through art matters so deeply. This is one of the most layered, honest, and important conversations I’ve shared on Inside FLARE so far. Not only because of Chelsea’s story, but because it reflects the reality so many people quietly live through every day. If you have ever questioned your pain, felt dismissed, or wondered how to turn something painful into something meaningful, this episode is for you. Keep creating, Keep healing💛 -Priscilla Chelsea, the president of Getting the Better of Endometriosis is a researcher with a strong passion for endometriosis awareness, as well as support for those suffering from the illness. Driven by her own personal experiences, she strives to make a meaningful impact on society to support the chronically ill. Show Notes: * Getting the Better of Endo on Facebook [https://www.facebook.com/gettingthebetterofendo] * TikTok [https://www.tiktok.com/@betterofendo?_t=ZP-8v7jPs7ZIlS&_r=1] * Instagram: https://www.instagram.com/gettingthebetterofendo/ * Project 514 415 [https://tr.ee/WZAWXUbzNe] - Explore the Lived Experience of Endometriosis Through Art and Literature * SATIRE V [https://tr.ee/cysf7cTEFA] * The American End of Endo Project [https://tr.ee/IBUu_Tukf3] * Worldwide EndoMarch [https://tr.ee/QuCBwqQ_au] Get full access to FLARE Journal at flareendo.substack.com/subscribe [https://flareendo.substack.com/subscribe?utm_medium=podcast&utm_campaign=CTA_4]

Sophie’s Endometriosis Story | Being Diagnosed Young, Navigating Anxiety, and Learning to Trust Yourself

This episode feels really special to me. I’m joined by Sophie, a member of the FLARE team, our unofficial “Substack Queen,” and an incredibly talented writer and creative. Sophie shares her experience being diagnosed with endometriosis at young age, and what it was like trying to understand something so complex at the time. We talk about what it means to grow up with a condition that most people around you don’t fully understand. How, at that age, you often don’t question what you’re told, even when something doesn’t feel right. How those early experiences can shape the way you see your body, your pain, and your voice over time. One of the most powerful parts of this conversation is when Sophie opens up about trust. Not just trust in doctors, but how repeated dismissal or lack of clarity can slowly turn into questioning yourself. Your symptoms. Your instincts. Your reality. Sophie also brings in her creative perspective in such a meaningful way. As a writer and zine creator, she has found ways to express her experience through storytelling and art, including a zine that reflects her personal journey with endometriosis. It’s a reminder that creativity can become a powerful outlet for processing something that is often so difficult to put into words. We also talk about the mental health side of endometriosis in a way that feels very real and very honest. The anxiety, the overthinking, and the emotional weight of not knowing what’s happening in your own body, especially at such a formative age. I’m so excited for what Sophie is building within FLARE as well. She will be leading one of our very first online workshops, creating space for others to explore storytelling and creative expression in a way that feels approachable and personal.What stood out to me most in this conversation is how quietly these experiences build. It’s not always one defining moment, but a series of small ones that shape how someone learns to cope, adapt, and make sense of what they’re going through. Sophie is from Belgium and is currently based in New Zealand. I appreciate her sharing her experience and perspective on the varying ways healthcare systems across countries address endometriosis She recently had a surgery herself and I feel lucky to have connected with her around the same time I had started my recovery process in March. Sophie brings such a thoughtful, grounded, and creative voice to this space, and I’m so grateful she shared it here. If you were diagnosed young, or if you’ve ever felt unsure about your own body because of what you’ve been told, I think this episode will resonate with you in a really personal way. This is you’re reminder that you are allowed to trust yourself. Keep creating, Keep Healing💛-Priscilla FLARE Journal is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber. Get full access to FLARE Journal at flareendo.substack.com/subscribe [https://flareendo.substack.com/subscribe?utm_medium=podcast&utm_campaign=CTA_4]

Mental Health and Endometriosis | A Therapist’s Perspective on Chronic Illness, Trauma, and Healing

For the first time, we’re welcoming a mental health professional onto the podcast, someone who doesn’t just understand chronic illness clinically, but works closely with patients living with endometriosis and other long-term conditions. I sit down with Danielle Sampson, trauma therapist and founder of Aligned Connections [http://www.traumatherapybuffalo.com], to talk about the emotional and psychological reality of living with chronic illness, and why this part of the experience is so often overlooked. We get into the gap that exists in both healthcare and mental health spaces when it comes to truly understanding chronic illness, and how little formal training many professionals actually receive in this area. We talk about the connection between chronic pain and anxiety [https://spondylitis.org/spondylitis-plus/the-link-between-stress-and-chronic-illness-tools-for-stress-management/], the emotional toll of navigating a body that feels unpredictable, and the importance of validating experiences that are so often minimized or dismissed. One of the most powerful parts of this conversation is the reminder that while chronic illness may be ongoing, the mental health impact does not have to be something you carry alone or without support. We discuss the impacts and importance of taking care of your mental health, and how it’s not separate from your physical health, it is essential to it. This episode is exactly why FLARE exists: to open up conversations that are not happening enough, and to bring in perspectives that help people feel seen, understood, and supported in a deeper way. I’m excited to share this conversation with you, and hope it gives you language, validation, and a sense of connection if you’ve ever felt like this part of your experience wasn’t being acknowledged. You’re not alone in this. Keep creating, Keep Healing💛-Priscilla Show Notes: * Danielle’s Instagram: ⁠https://www.instagram.com/alignedconnectionspllc ⁠ [http://⁠https://www.instagram.com/alignedconnectionspllc ⁠] * Danielle’s website: ⁠⁠https://www.traumatherapybuffalo.com [https://www.traumatherapybuffalo.com] * cPTSD: ⁠Cleveland Clinic⁠: https://my.clevelandclinic.org/health/diseases/24881-cptsd-complex-ptsd [https://my.clevelandclinic.org/health/diseases/24881-cptsd-complex-ptsd] * ⁠Link between chronic stress/chronic illness and inflammation⁠: https://spondylitis.org/spondylitis-plus/the-link-between-stress-and-chronic-illness-tools-for-stress-management/ [https://spondylitis.org/spondylitis-plus/the-link-between-stress-and-chronic-illness-tools-for-stress-management/] * History of American gynecology: ⁠Medical Bondage by Deirdre Cooper Owens⁠: https://www.goodreads.com/book/show/34689315-medical-bondage [https://www.goodreads.com/book/show/34689315-medical-bondage] * Directory of therapists trained in perinatal mental health: ⁠Postpartum Support International⁠: https://postpartum.net/get-help/provider-directory/ [https://postpartum.net/get-help/provider-directory/] * Directory of therapists that do EMDR (Eye Movement Desensitization and Reprocessing): ⁠EMDRIA⁠: https://www.emdria.org/find-an-emdr-therapist/ [https://www.emdria.org/find-an-emdr-therapist/] Get full access to FLARE Journal at flareendo.substack.com/subscribe [https://flareendo.substack.com/subscribe?utm_medium=podcast&utm_campaign=CTA_4]

Episode Preview: Mental Health and Endometriosis | A Therapist’s Perspective on Chronic Illness, Trauma, and Healing

For the first time, we’re welcoming a mental health professional onto the podcast, someone who doesn’t just understand chronic illness clinically, but works closely with patients living with endometriosis and other long-term conditions. I sit down with Danielle Sampson, trauma therapist and founder of Aligned Connections [http://www.traumatherapybuffalo.com], to talk about the emotional and psychological reality of living with chronic illness, and why this part of the experience is so often overlooked. We get into the gap that exists in both healthcare and mental health spaces when it comes to truly understanding chronic illness, and how little formal training many professionals actually receive in this area. We talk about the connection between chronic pain and anxiety [https://spondylitis.org/spondylitis-plus/the-link-between-stress-and-chronic-illness-tools-for-stress-management/], the emotional toll of navigating a body that feels unpredictable, and the importance of validating experiences that are so often minimized or dismissed. One of the most powerful parts of this conversation is the reminder that while chronic illness may be ongoing, the mental health impact does not have to be something you carry alone or without support. We discuss the impacts and importance of taking care of your mental health, and how it’s not separate from your physical health, it is essential to it. This episode is exactly why FLARE exists: to open up conversations that are not happening enough, and to bring in perspectives that help people feel seen, understood, and supported in a deeper way. I’m excited to share this conversation with you, and hope it gives you language, validation, and a sense of connection if you’ve ever felt like this part of your experience wasn’t being acknowledged. You’re not alone in this. Keep creating, Keep Healing💛-Priscilla Show Notes: * Danielle’s Instagram: ⁠https://www.instagram.com/alignedconnectionspllc ⁠ [http://⁠https://www.instagram.com/alignedconnectionspllc ⁠] * Danielle’s website: ⁠⁠https://www.traumatherapybuffalo.com [https://www.traumatherapybuffalo.com]⁠ * cPTSD: ⁠Cleveland Clinic⁠: https://my.clevelandclinic.org/health/diseases/24881-cptsd-complex-ptsd [https://my.clevelandclinic.org/health/diseases/24881-cptsd-complex-ptsd] * ⁠Link between chronic stress/chronic illness and inflammation⁠: https://spondylitis.org/spondylitis-plus/the-link-between-stress-and-chronic-illness-tools-for-stress-management/ [https://spondylitis.org/spondylitis-plus/the-link-between-stress-and-chronic-illness-tools-for-stress-management/] * History of American gynecology: ⁠Medical Bondage by Deirdre Cooper Owens⁠: https://www.goodreads.com/book/show/34689315-medical-bondage [https://www.goodreads.com/book/show/34689315-medical-bondage] * Directory of therapists trained in perinatal mental health: ⁠Postpartum Support International⁠: https://postpartum.net/get-help/provider-directory/ [https://postpartum.net/get-help/provider-directory/] * Directory of therapists that do EMDR (Eye Movement Desensitization and Reprocessing): ⁠EMDRIA⁠: https://www.emdria.org/find-an-emdr-therapist/ [https://www.emdria.org/find-an-emdr-therapist/] Get full access to FLARE Journal at flareendo.substack.com/subscribe [https://flareendo.substack.com/subscribe?utm_medium=podcast&utm_campaign=CTA_4]

They Said “It’s Normal”: Living With Undiagnosed Endometriosis

In this episode, I sit down with Sam Edgington from the UK to talk about her journey with endometriosis, from her first symptoms as a teenager to finally receiving a diagnosis years later. Sam shares what it was like experiencing severe pain from a young age and being repeatedly dismissed, told that what she was going through was “normal,” and left without the support or answers she needed. We talk about the isolation that can come with living with symptoms that don’t match what others experience, and how the lack of education around women’s health can leave so many people feeling confused, unheard, and alone. This conversation also goes deeper into the emotional side of chronic illness, the impact on mental health, and how important it is to have spaces where these experiences can actually be talked about openly. Sam also shares the inspiration behind “Echoes,” the support group she’s starting to create connection and community for others going through similar experiences. From online spaces to her vision of building in-person support groups, this is about making sure no one has to navigate this alone. This episode is a reminder that just because something is common doesn’t mean it’s normal, and that your experience deserves to be taken seriously. If you’ve ever felt dismissed, misunderstood, or alone in what you’re going through, this conversation is for you. You’re not alone in this. Keep creating, Keep healing💛 - Priscilla Get full access to FLARE Journal at flareendo.substack.com/subscribe [https://flareendo.substack.com/subscribe?utm_medium=podcast&utm_campaign=CTA_4]