The STories We Tell

Created by 2016 Stanford Medicine X ePatient Delegate, Cara Gael O'Regan, as part of the ePatient Storyteller Track.

Created by 2016 Stanford Medicine X ePatient Delegate, Cara Gael O'Regan, as part of the ePatient Storyteller Track.

About the Project

There’s a lot to consider when telling our stories, and even more to consider when we’re handling the stories of others. That was the thread that come up in so many of my conversations with the other ePatients at this year's Stanford Medicine X Conference.

In this episode of the podcast, you’ll hear me talk to a handful of ePatients about sharing their own stories and the delicate balance of telling the stories of others.

These conversations touched on themes of identity, privacy, patient experience, using technology to find connection, and ways in which we’re trying to compensate for the many deficits that exist in our healthcare system through that connection and storytelling. 


Explore Cara's other projects for the 2016 MedX ePatient Storyteller Track


You can listen to the episode below, or subscribe to In Sickness + In Health on iTunes, Stitcher, Soundcloud, Google Play, or wherever you get your podcasts.

Voices from the Episode

Below find links to the work of those featured in the episode, and time stamps for each clip. Transcript coming soon!

Michael D. Fratkin, MD [04:15]: MedX Presenter, Palliative Care Physician, Founder of Resolution Care

Twitter: @MichaelDFratkin
Website: resolutioncare.com

Christopher Snider [11:45]: ePatient member of the MedX Executive Board, Podcaster
Person Living with Type 1 Diabetes

Twitter: @iam_spartacus
Tweet thread of Just Talking Podcast episodes with MedX People
Website: christopherasnider.com
Episodes Referenced:
- 07 My Disease Secret with Christopher Snider
- Cara on Christopher's Just Talking Podcast

Dawn M. Gibson [15:25]: ePatient Storyteller, Caregiver, Blogger, Founder of #SpoonieChat
Person Living with Ankylosing Spondylitis and Food Allergies

Twitter: @DawnMGibson
Tumblr: webauntie.tumblr.com
Storyteller Track Projects:
- “How I Got Here” personal essay
- Ask Spoonie Chat advice column
Referenced: "The Spoon Theory" by Christine Miserandino of ButYouDontLookSick.com

Liz Salmi [23:25]: ePatient Presenter, Healthcare Communications Strategist, Co-Founder of #BTSM
Person Living with Brain Cancer

Twitter: @thelizarmy
Website: thelizarmy.com
Transcript of MedX ePatient Ignite! Talk

Ryan Prior [26:35]: ePatient Storyteller, Multimedia Journalist, Social Entrepreneur
Person Living with Chronic Fatigue Syndrome

Twitter: @r_prior
Website: rtprior.com
Documentary: Forgotten Plague (2015)
Storyteller Track blog posts:
- "Years of Collecting Dreams Deferred-Stanford Medicine X"
- "Should I Sequence My Genome?"
Episode 36: ME/CFS & POTS with Ryan Prior

Melissa [29:15]: ePatient Storyteller, Blogger
Person Living with Primary Sjögren's Syndrome

Twitter: @710dot9
Blog: 710dot9.tumblr.com
Storyteller Track Project: Asked @ MedX

Ally [44:30]: ePatient Advisor, Blogger
Person Living with Type 1 Diabetes

Twitter: @verylightnosuga
Blog: verylightnosugar.com
MedX Blog Post: "Platforms of Courage"
Episodes Referenced:
- 15 Am I Dying or Just Getting my Period?, about PMDD
- 21 One Thing After Another, about Medical PTSD


Explore Cara's other projects for the 2016 MedX ePatient Storyteller Track


previous in sickness + in health Episodes with MedX ePatients

07 My Disease Secret with Christopher Snider: Christopher talks about living with Type 1 Diabetes, the divides within the diabetes community, getting involved in the community himself, and launching the My Disease Secret platforms. Involved with MedX since 2012, member of MedX Executive Board; 9 November 2015.

Twitter: @iam_spartacus
Tweet thread of Just Talking Podcast episodes with MedX People
Website: christopherasnider.com
- "About Stanford Medicine X 2016" blog post

10 Not Standing Stills Disease with Kirsten Schultz: Kirsten talks about her rare condition, Still’s Disease, and where it fits into the larger picture of autoimmune arthritis. They talk about growing up sick, blogging, what Kirsten hopes to do when she finishes her masters degree in Healthcare Administration, learning to be nice to themselves, and PTSD. 2015 ePatient Scholar, 2016 Delegate (Entrepreneurship Track); 30 November 2015.

Twitter: @Kirstie_Schultz
Website: kirstenschultz.org

13 Why Stop at One? with Cyrena: Former med student and PhD candidate, Cyrena, talks about her experience pursuing higher education in the biomedical sciences, other ways to pursue related interests, what it’s been like to deal with both Bipolar Disorder and Lupus along the way, and the systemic ableism baked in to medicine and medical education. 2015 ePatient Scholar; 28 December 2015.

Twitter: @SeamonkeyPhD
ePatient Ignite! Talk from the 2015 MedX NY Pop-up

14 Let's Get Physical with Kirsten Schultz: Kirsten talks about how and why she started the Twitter hashtag #ChronicSex as a safe space to talk more openly about self-care, self-love, sexuality, and intimacy in the context of chronic illness. They also talk about their own experience with these topics, and touch on physical therapy and patient advocacy. 2015 ePatient Scholar, 2016 Delegate (Entrepreneurship Track); 4 January 2016.

Twitter: @ChronicSexChat
Website: chronicsex.org

16 Fun With Endometriosis with Abby Norman: Writer Abby Norman talks about her experience with Endometriosis, how difficult it can be to get it diagnosed, having others value her fertility and the satisfaction of her male sexual partners above her own health and quality of life, and the book deal she signed to write about it all. 2015 ePatient Scholar; 18 January 2016.

Twitter: @AbbyMNorman
Website: abbynormanwriter.com

17 It's 'Just' Stress with Cyrena: Cyrena talks about the link between stress and biology, epigenetics, the limitations of scientific knowledge and science communication, and the indelicate habit so many doctors have of telling patients their mysterious symptoms are “all in their head.” 2015 ePatient Scholar; 25 January 2016.

Twitter: @SeamonkeyPhD
ePatient Ignite! Talk from the 2015 MedX NY Pop-up

21 One Thing After Another with Heather C. Aspell: Heather talks about developing post traumatic stress symptoms after medical experiences related to her complex chronic illness. 2016 ePatient Delegate (Storytelling Track); 23 February 2016.

Twitter: @hcorini
Website: heathercoriniaspell.com
- Making the Invisible Visible photo essay
- MedX Art

29 Digital Red Tent with Abby Norman: Cara and Abby debrief about the Endometriosis Foundation conference they both attended, what patients really need until there's more consensus on how to treat the condition, medical debt, menstrual stigma, bleeding on things, personal care, and living with chronic fatigue. 2015 ePatient Scholar; 28 April 2016.

Twitter: @MenstrualMaven
Publication: Ask Me About My Uterus
Storyteller Track Collaboration: Project UterX

Project UterX with Charlie Blotner: Charlie joins Cara to discuss issues related to accessing gynecological healthcare for transmasculine gender nonconforming individuals. They talk about coverage exclusions for transition-related care, gynecological cancer rates, and the exclusionary nature of the gendered language of reproductive health issues. 2015 ePatient Scholar, 2016 Student Advisor; 17 September 2016.

Twitter: @CBlotner_
Website: Plated Life
- "The Missing Link" blog post
- "Conversations that matter" blog post
2015 MedX ePatient Ignite! Talk: "On self-identity, gender, and their impact on whole-person health"
Storyteller Track Collaboration: Project UterX

36 ME/CFS & POTS with Ryan Prior: Cara talks to Ryan about ME/CFS, POTS dysautonomia, how the two patient populations overlap, and some of the performative aspects of being a patient. Cara talks about living with and trying to manage POTS, quality of life, and they try to answer the question posed by the MedX Studio Space of how to foster disruptive co-creation in healthcare. 21 October 2016

Twitter: @r_prior
Website: rtprior.com
- "Years of Collecting Dreams Deferred-Stanford Medicine X" blog post
- "Should I Sequence My Genome?" blog post
Documentary: Forgotten Plague (2015)

37 Happy Birthday, Baby!: To celebrate the podcast's first birthday, Cara asked her oldest friend to interview her.. The first in a series of episodes, Cara talks about why she started the podcast, what the experience of producing it has been, how it’s been different than what she expected to do, and what might be in store for year two. 28 October 2016

Twitter: @bimpse, @insicknesspod
Website: bimpse.com, insicknesspod.com
- bgw for MedX: digital self portraiture as qualitative self tracking
Storyteller Track Collaboration: Project UterX
Podcast: In Sickness + In Health