My name is Carol, and I’m delighted you’re here. Hypermobile Ehlers Danlos Syndrome (hEDS) and its many comorbidities have effected every aspect of my life since I was a young child. As many of you can relate, there was almost no understanding of EDS and other chronic, invisible illnesses until recently, leaving those of us who suffer to blindly feel our way through life, trying to make sense of our experiences and find a path forward. It was a lonely and confusing path.
It’s been a strange experience to go from no understanding of what was happening in my body and a disorder that existed in complete obscurity, to a reality in which information is so ubiquitous that it’s hard to know where to start when looking for resources. This is a welcome change, and I am forever grateful to The Ehlers Danlos Society for their thorough and effective global awareness campaign. But it can still be hard to forge a path forward and pinpoint the resources that will help with the un-ending challenges that make up life with an invisible illness. The right resources make all the difference. The difference between skipping the family vacation vs. going on the road trip. The difference between quitting your job or forging your career. The difference between self-doubt and self-confidence.
Carol’s Chronicals serves as an organized gallery of resources that have worked for me (or haven’t). I’d love to save you some spoons along this journey. Join me in this maze of chronic illness life, and we’ll find some life hacks together!
