“Hello! My name is Nikki and I am 23 years old. I live in New Jersey, and I have Ehlers-Danlos Syndrome (EDS). EDS affects every aspect of my life. I have a myriad of symptoms and co-occurring disorders, all which can be objectively observed, and yet for most of my life doctors told me I was making it up, or it was “all in my head.” My abnormally high heart beat was labeled “anxiety,” and my joint pain labeled as “psychosomatic.” I no longer tolerate this ignorance from medical professionals. Awareness is important to me, because I shouldn’t have to explain what my condition is to every new doctor I meet. I shouldn’t have to literally spell out its name and explain how it affects me, while their skeptical gazes criticize my documented history. I shouldn’t have to fight for treatment, or to be taken seriously. If I have any one piece of advice for those who are still struggling to get a diagnosis/treatment, it would be this; Never stop advocating for yourself. Never stop searching for answers, even when others tell you that there aren’t any. Keep looking for the ones in life who will help you and support you. I found mine, and now I have an amazing team of doctors and friends/family who keep me going every day. There are answers out there. And your case is not “too complicated.” @syncope_squad
6 comments
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