#44 How to talk so your doctor will listen: patient advocacy for POTS, EDS, MCAS, ME/CFS and Long COVID, with Penny Parkes

Do your medical appointments leave you disappointed, frustrated, angry or traumatised? Do you come away without the diagnosis, referral or treatment you were hoping for? Here is the advice that could change your course.

Penny Parkes is a long-time patient, writer, health-journalist and author of How to Talk So Your Doctor Will Listen. She lives with POTS (postural orthostatic tachycardia syndrome), EDS (Ehlers-Danlos syndrome), MCAS (mast cell activation syndrome) and other overlapping autonomic, autoimmune and vascular conditions. Drawing on decades of medical appointments for this multitude of overlapping chronic conditions and acute flares, Penny wrote this book as her legacy project: to distil all that she has learned to help you to get the best from your healthcare system.

Full of practical, usable, advice Penny’s book is a reference guide for anyone navigating medical appointments. But it is particularly useful for those with complex chronic illness, including ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) and Long Covid, guiding you through what to do, and what not to do, to get what you need from the few minutes you have.

In this episode we discuss:

• Preparing for a medical appointment, including symptom data and knowing your own baseline
• Creating your “My Headlines” so your doctor hears your most important symptom first
• Building a partnership with your doctor and working as a team
• Medical misogyny, the gender health gap and drug dosing based on male bodies
• Diagnostic overshadowing, gaslighting and when symptoms are mistaken for anxiety
• Handling medical trauma with Penny’s RESPECT pathway

At the heart of Penny’s strategy is creating an overview of your condition while understanding what you need right now, so you can focus on the most urgent problem in each appointment.

Such down-to-earth, simple advice sets you up to feel empowered rather than overwhelmed as you navigate healthcare with POTS, EDS, MCAS, ME/CFS, Long COVID or any complex chronic illness.

Penny also shares wonderful snippets of patient advocacy advice on her social media and now explores subject in more depth using her writing talents on her substack. How to Talk so Your Doctor Will Listen is available from these suppliers in the UK and internationally. It is also available on Audible.

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