Tag Archive: Mental Health

The long road to diagnosing HSD

It has taken a long time for my family to be diagnosed with hypermobility spectrum disorder (HSD). We’ve been told different things by different geneticists, and we have symptoms that aren’t attributed to HSD. One of my brothers, my mother, and myself have also all been diagnosed with Hashimoto’s disease. It proves extremely difficult for […]
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If only people understood

I’m Spencer, I’m 16 years old, and I have hEDS. I wanted to share my story, because I know that there isn’t a lot of visibility for the men out there with EDS. My symptoms started when I was 6 years old. It started out as pain and instability in my ankles and knees, which was […]
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Managing my insecurities

My name is Rachel and I have classical EDS (cEDS). I’ve never been open to anyone about my insecurities about having EDS. I’ve told others that I have it, and explained what it is in a very objective way, but I never dwelt deeper than that. Searching ‘EDS’ in Instagram was shocking to find so […]
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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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