I’m Sara, a 29 year old spoonie, biboliophile, and professional napper aspiring to find happiness with chronic pain/illness. My primary diagnosis is Hypermobile Ehlers-Danlos Syndrome (EDS). I also live with Dysautonomia/POTS, Mast Cell Activation Syndrome, Asthma, Chronic Migraine with Persistent Aura, Occipital Neuralgia, Cervicogenic Headache, atypical facial pain, asthma, GERD, IBS, chronic fatigue, fibromyalgia, anxiety, and depression. This means that I am almost always hurting somewhere, nauseous, seeing stars, dizzy/wobbly and exhausted. Every zebra has different stripes, and these are just some of mine. I am also undergoing additional evaluation to determine if I have other conditions commonly associated with EDS, such as dysautonomia.
Please realize that I am just one person with EDS and cannot possibly represent everyone with the condition. Many have it worse, but pain is not a competition. Mine is just as valid as anyone’s.
Like many people with EDS, my diagnosis was and is a journey. Along the way there have been many people (professionals and otherwise) who did not believe I was in pain, or had difficulty understanding the extent of my illness. I hope that sharing my experience here will give purpose to my pain, and possibly even make the road a little less bumpy for other zebras out there still searching for answers.