Invisible Not Broken - Chronic Illness Podcast Network

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 

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(Disclaimer: all content based on personal experience and research and should not be taken as medical advice)

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