How to Advocate for Yourself

“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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