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(HumanCare podcast) How to Advocate for Yourself: Em and Kate Miller
Invisible Not Broken - Chronic Illness Podcast Network
English - January 29, 2020 21:11 - 1 hour - 129 MB - ★★★★★ - 113 ratingsMental Health Health & Fitness Alternative Health chronic illness invisible illness spoonie fibromyalgia ehlers danlos chronic fatigue healthcare lupus pain care Homepage Download Apple Podcasts Google Podcasts Overcast Castro Pocket Casts RSS feed
“You know your body better than anyone. You’re living in it 24/7. No one should be dismissing the stuff you have to say.”-Em 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 1718:55 – Kate’s diagnosis and that people typically have more than one autoimmune disorder19:20 – POTS diagnosis19:28 – What is POTS20:20 – Difference between how Em and Kate experience their illnesses22:16 – What is EDS23:24 – Perceptions of chronic illness and breaking the stigma28:00 – Empowering aspect of the TwoBeingHealthy blog29:04 – Examples of what they share on their blog30:50 – Problem with doctors assuming patients with the same conditions will have the same traits31:30 – The importance of advocating for yourself at doctor’s appointments32:39 – 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 appointment38:55- Knowing the tests to ask for re EDS and POTS + the problem with POTS43:13 – How to act with a new doctor and a time constraint44:04 – What to do if you feel you’re not being taken seriously by the doctor46:16 – The importance of finding a doctor you can trust49:20 – Problems communicating with doctors, especially renowned specialists52:32 – Cytochrome mutations and their effect on medication absorption53:54 – Difference between advocating for oneself and making demands55:54 – Importance of mutual respect in doctor patient relationships and finding a doctor you trust59:45 – On Em and Kate’s unsponsored product testing1:01:37 – The importance of personal comfort1:04:10 – The importance of finding what works for you 1:04:49 – Benefits of having an emergency relief kit1:06:47 – The Chronic Babe and being as well as possible1:07:27 – The big impact of little changes and recommendations1:08:10 – The importance of health and being proactive1:09:10 – What is Mast Cell Activation Disorder1:14:11 – The chronic illness community that developed around the blog1:17:45 – The challenge of balancing the difficult and raw with the positive and proactive1:19:50 – The benefit of having someone vs going it alone1:20:38 – The upside of following other people’s chronic illness journeys on social media1:21:52 – 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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