Dealing with Doctors
What’s the Point of Pursuing EDS Diagnosis?
Like many people, my hypermobile Ehlers-Danlos Syndrome (hEDS) was diagnosed after a steep and sudden decline in my health. I had been navigating fatigue, pain, and fogginess for years, but in April 2020, I became bedbound for months following an incident during a Zoom call where I began blacking out and twitching. I had been […]
Persistent
Many timesI have been called resilient. A title inflicted on melike a brilliant,gleaming badge of honor. But it was one that I never asked for.Worn without choiceor the ability to claima different perspective,a different name. I give myself a new description,a title that encompassesthe pain and infliction. I am persistent. Resilience is to bendand not […]
POTS vs. Anxiety: The Misdiagnosis Maze
In this article, there will be facts and opinions. Please take as such and ensure you speak with a well-trained healthcare or mental health provider to ensure you get the best care for dysautonomia and/or anxiety disorders to ensure you are correctly diagnosed and treated. This is not medical advice, but one person’s lived experience […]
Part Three: Medical Gaslighting as a Source of Clinician-Associated Trauma
Content warning: This article discusses medical gaslighting and real-life examples of clinician-associated trauma. Please take care of yourself as you see fit. As previously reported, clinician-associated trauma (CAT) is a new term used to describe the trauma created by repeated, negative clinical interactions. It was coined as a result of the study reported in “Clinician-associated […]
Ehlers-Danlos – “An Accident Waiting To Happen”
Philip Howard was the 88th person in Britain to be diagnosed with Ehlers-Danlos syndrome (EDS). He has written a book about his fight to overcome adversity. Philip Howard’s new book “An Accident Waiting To Happen” tells of living with a rare condition that leaves him prone to falling over and breaking bones. Ben Blosse reports. […]
Attention Doctors: An EDS Patient’s Bill of Rights
Many EDS patients are struggling to get their doctors to understand their condition. This “Bill of Rights” is a tool that may help EDSers communicate with doctors. By an_angel_with_wings “The purpose of this Bill of Rights is not to be combative or argumentative. I have experienced all of these things during the time that my […]
Being Your Own Advocate
Author: Jonathan Rodis President-Massachusetts Chapter of the National Marfan Foundation Head-EDS Massachusetts and New England Support Group “Wow..how many times have you or loved one or a friend been told something totally wrong about your condition from a doctor? Of course, I know the answer…many, many, many times. The worst imaginable place to hear it […]
