Tag Archive: Mental Health

THE QUIET SIDE OF EDS

My name is Jimmy and I’m currently a freshman in college studying management of information systems. When most people look at me, it’s hard to tell that I struggle with what could be classified as an “invisible disorder.” And yet, as I’ve since discovered, EDS and my associated conditions are all the more real and important.
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TAKING BACK CONTROL

I educated myself. Research on EDS, pain management, and diet. I went to conferences. I visited doctors. Slowly I built a plan to manage my life and continue to be a high-functioning individual. I started taking a medication for sleep and realized I hadn’t had a full nights sleep in years. It felt so good to sleep again!
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MAKING THE WORLD LISTEN

We went to my paediatrician that same day. And just like that, my bubble popped. “If you had Ehlers Danlos Syndrome, we’d know.” He set aside my printed research and dismissed me. “We know something is wrong, and most likely everything that’s happening is connected, but we’ll probably never really know what it is.”
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LIVING IN THE GRAY

I am a rigid rule follower, unforgivingly strict about the outline of my day, and a very self-driven entrepreneur. Look, I’ll be honest; everything is great as long as everything goes exactly as I have planned it. This is why, perhaps, that my recent diagnosis of EDS completely turned my world upside down.
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