Share
![cover art for (HumanCare podcast) How to Advocate for Yourself: Em and Kate Miller](https://res.cloudinary.com/pippa/image/fetch/h_750,w_750,f_auto/https://assets.pippa.io/shows/5b6ba27ab39d904e57d877bb/1580323027430-cb9848cbc9f15f48c55b136aefa6ae92.jpeg)
Invisible Not Broken - Chronic Illness Podcast Network
(HumanCare podcast) How to Advocate for Yourself: Em and Kate Miller
Em and Kate Miller are the co-authors of chronic illness blog, TwoBeingHealthy.com and the YouTube channel of the same name. Forced into non-traditional careers by chronic illnesses that include Lupus, POTS, EDS, Mast Cell Activation disorder diagnosed in their late teens, their blog is a delightful mix of practical tips for patients, product testing, and their own struggles. Today they share their journey, tips on how to advocate for yourself as a patient, and the importance of community support.
Visit:
Blog: https://www.twobeinghealthy.com/
YouTube channel: http://bit.ly/2TOvA7E
Doctors Appointment – Our Top 10 Tips! : http://bit.ly/2sO6DxX
Instagram: @twobeinghealthy
Time Stamps:
- 17:58 – Em’s diagnosis of Lupus at 17
- 18:55 – Kate’s diagnosis and that people typically have more than one autoimmune disorder
- 19:20 – POTS diagnosis
- 19:28 – What is POTS
- 20:20 – Difference between how Em and Kate experience their illnesses
- 22:16 – What is EDS
- 23:24 – Perceptions of chronic illness and breaking the stigma
- 28:00 – Empowering aspect of the TwoBeingHealthy blog
- 29:04 – Examples of what they share on their blog
- 30:50 – Problem with doctors assuming patients with the same conditions will have the same traits
- 31:30 – The importance of advocating for yourself at doctor’s appointments
- 32:39 – The importance of not wearing makeup or nailpolish to doctors’ appointments
- 37:22 – The importance of tracking your symptoms and having notes of everything you want to cover during the appointment
- 38:55- Knowing the tests to ask for re EDS and POTS + the problem with POTS
- 43:13 – How to act with a new doctor and a time constraint
- 44:04 – What to do if you feel you’re not being taken seriously by the doctor
- 46:16 – The importance of finding a doctor you can trust
- 49:20 – Problems communicating with doctors, especially renowned specialists
- 52:32 – Cytochrome mutations and their effect on medication absorption
- 53:54 – Difference between advocating for oneself and making demands
- 55:54 – Importance of mutual respect in doctor patient relationships and finding a doctor you trust
- 59:45 – On Em and Kate’s unsponsored product testing
- 1:01:37 – The importance of personal comfort
- 1:04:10 – The importance of finding what works for you
- 1:04:49 – Benefits of having an emergency relief kit
- 1:06:47 – The Chronic Babe and being as well as possible
- 1:07:27 – The big impact of little changes and recommendations
- 1:08:10 – The importance of health and being proactive
- 1:09:10 – What is Mast Cell Activation Disorder
- 1:14:11 – The chronic illness community that developed around the blog
- 1:17:45 – The challenge of balancing the difficult and raw with the positive and proactive
- 1:19:50 – The benefit of having someone vs going it alone
- 1:20:38 – The upside of following other people’s chronic illness journeys on social media
- 1:21:52 – Importance of community, partnerships, and trust
SHARE 😍
RATE & REVIEW 👍
➡️ Watch the video version of this interview
(Disclaimer: all content based on personal experience and research and should not be taken as medical advice)
👉PLEASE SUPPORT US ON PATREON <3
👉#Wellspo Weekly Newsletter! Sign up here!
👉 Find your ideal integrative practitioners on Wellacopia.com
👉 Check out more episodes like this on Invisible Not Broken
👉 Read and watch more content (or submit your own) on the #Wellspo blog
More episodes
View all episodes
Using Self-Portraits to Represent Chronic Pain
01:00:29|Monica Michelle is joined by artist Kyrianna Bolles.Kyrianna lives with chronic pain.In this episode, Monica and Kyrianna discuss: Kyrianna’s struggle to be accommodated for her pain throughout school yearsHow Kyrianna uses her portraits to help represent other’s chronic conditionsThe communities Kyrianna has built, from a college support group to an artist collectiveKyrianna’s favorite tools for art and chronic painTIMESTAMPS00:00 Intro to Kyrianna 10:45 Kyrianna’s self portraits 24:42 Kyrianna’s Support group 33:40 Animus45:57 Kyriannas favorite support tools The full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.comDory’s Corner: New Podcast intro with Host Nick Clemmons
01:00:25|Monica Michelle is interviewed by consultant and content creator Nick Clemmons. Nick recently started the blog Dory’s Corner with Invisible Not Broken. A companion podcast hosted by Nick will be released soon.Nick lives with Sickle Cell Disease. Monica lives with Ehlers-Danlos Syndrome, POTS, MCAS, and Fibromyalgia.In this episode, Nick and Monica discuss:Monica’s diagnostic history and her relationship with her disabilitiesHow Monica learned to advocate for herselfLack of media representation influencing abled people’s perspectives of disabled folksHow Monica’s family functions around disabilityTIMESTAMPS00:42 - Monica’s history and relationship with her disabilities13:06 - How Monica found her voice *Trigger Warning: Mention of SA* 31:40 - Media representation45:09 - Monica’s familyThe full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.comDisability Access in the Education System and How to Support Disabled Folks’ Needs with Nick Clemmons
54:05|Monica Michelle is joined by consultant and podcast host Nick Clemmons.Nick lives with Sickle Cell Disease.In this episode, Monica and Nick discuss:The ways disabled folks are often forgotten in education infrastructureHow Nick navigates societal limitations to achieve his goalsDisability representation in the mediaKnowing how to realistically offer help to disabled folksTIMESTAMPS00:42 - ADA, Title IX, and disability access in schools20:08 - How Nick makes and achieves opportunities 28:40 - Media and disability40:42 - How to respectfully be concerned about someone else’s needsThe full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.comVulnerability, Resiliency, and Advocacy with Tim Reitsma
47:06|Monica Michelle is joined by consultant and podcast host Tim Reitma.Tim lives with Crohn's Disease.In this episode, Monica and Tim discuss: Tim’s resiliency through managing his Crohn’sThe importance of self-advocacy, especially in the workplace Tim’s podcast why he shares stories of those with invisible illness TIMESTAMPS00:47 - Tim's diagnosis 06:31 - How and why Tim applies self advocacy15:41 - Why Tim started his podcast22:42 - Invisible condition etiquette31:00 - What HR can do better for employees with invisible illness39:31 - Tools Tim uses to care for his Crohn’s outside the homeThe full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.comTech and Disability: What VR Offers the Disabled Community with Sunny Ammerman
01:10:27|Monica Michelle is joined by artist and disability advocate Sunny AmmermanSunny lives with Septo-optic dysplasia, panhypopituitarism, Optic Nerve Hypoplasia, and is missing a membrane in the brain called the "septum pellucidum".In this episode, Monica and Sunny discuss: Sunny’s complex disorders and how she copes with themEverything VR provides from accessible gaming, social platforms and the potential for better online education.Various VR/AR games and their gameplay Sunny’s VR support groupTIMESTAMPS00:45 - What VR/AR offers for chronically ill and disabled folks11:57 - Sunny’s conditions and how she copes with them17:55 - Features that make VR games accessible or inaccessible as well as different games and their play experiences37:13 - The social aspects of virtual gaming51:32 - What opportunities VR has for the future1:04:49 - Sunny’s VR support group The full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.comReporting on Chronic Illness and Disability with Journalist Julia Metraux
39:16|Monica Michelle is joined by Journalist Julia Metraux.Julia lives with vasculitis, mild to moderate hearing loss, and has experienced long COVID.In this episode, Monica and Julia discuss: Julia's diagnosis with vasculitis and how it influences her journalistic lensHow community impacts the mental health of those with chronic illnessHow Julia and Monica find positives and negatives in the internet spaces for chronically ill and disabled folksThe politics of how government, businesses, and celebrities influence the chronic illness community TIMESTAMPS00:32 - Julia's diagnostic journey07:02 - Julia’s work reporting on the online community of chronic illness 16:32 - The effect of Internet communities on chronically ill and disabled folks26:46 - How Julia’s illness impacts her work, both in what she writes about and how she manages her lifestyleThe full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.comAuthor of “Pain: The Ultimate Mentor,” Physiotherapist Kevin Hunt
31:29|Monica Michelle is joined by author & physiotherapist Kevin Hunt.Kevin lives with chronic pain.In this episode, Monica and Kevin discuss: Kevin’s philosophy of pain management as a physiotherapist who experiences chronic pain. The Hexagon Model, a life-management tool for focusing on what’s important to you.Kevin’s idea behind his new book.Using pain as a guide.TIMESTAMPS00:34 - Kevin’s work as a physiotherapist specializing in the experience of pain 06:44 - The Hexagon Model for managing your life’s needs14:00 - Putting aside the idea of a “quick fix”19:45 - Kevin’s personal experience with pain and how he uses it with patients28:44 - Kevin’s book, “Pain: The Ultimate Mentor”The full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.comAuthor of “Through the Pain: The Silent Suffering & Triumph of a Personal Trainer”: John K. Frazier
28:35|Monica Michelle is joined by author & personal trainer John K. Frazier.John lives with ankylosing spondylitis.In this episode, Monica and John discuss: John’s work as a physical trainer and authorChronic pain comparisonsPersonal triumphTIMESTAMPS00:50 - John’s business & diagnosis07:19 - Chronic pain olympics09:31 - Talking about & hiding a diagnosis15:09 - Personal triumph18:24 - Staying in the present23:29 - The superman complexThe full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.comThe Creative Process, Self Worth, and Dating with Disability: Laura Mustard
31:08|Monica Michelle is joined by musician Laura Mustard.Laura lives with VATER syndrome.In this episode, Monica and Laura discuss: Laura’s inspiration for her upcoming musical EP.How Laura’s illness impacted her recent relationship & self-image.Laura’s creative process, new music, and social media pressure.TIMESTAMPS00:30 - Laura’s new EP / Monica’s recent COVID experience05:32 - Relationships with chronic illness11:20 - Image and self acceptance with disability15:32 - Laura’s creative process and current projects20:05 - Pursuing creativity despite social media attentionThe full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.com