Tag Archive: Support System

My twin sister and I fought to be believed

At 5 years old I remember my thumb and hips popping in and out of place. I would be in horrendous pain but I would keep it to myself. Then I would chat with my identical twin sister then we realized that our pain was very similar.  At around the age of 13, I decided
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A selfie of Christie smiling at the camera

Learning to climb the ladder of life again

I, like many working people, especially working mothers can do what I call ‘struggle with the juggle’ of everyday stress, demands, to-do lists, and overbooked calendars. Then add on chronic illness and it can feel like an impossible life. How can we possibly keep all of the moving balls in play? I dropped my juggling
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Stephen's story with Ehlers-Danlos syndrome

I struggle to find a job that will accept me

It would take me hours to tell my story fully. But here is a start.  One day just before Christmas I got up off of my bed and felt excruciating pain in my knee, I went to the emergency room and because I could still move my knee they sent me home. A few months
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My EDS diagnosis was questioned because of my weight

“Wait, you can’t have Ehlers-Danlos syndrome… can you?” So, luckily for us EDSers, medical professionals out there are slowly (oh so slowly) starting to recognize the struggle we have with this chronic, genetic, faulty collagen, pain-fuelled condition. Many don’t understand it, some even deny its very existence, but a few have embraced the need for
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Having someone who understands every unstable step

My mother and I were diagnosed in tandem. My mother was 39 but looked 19, living a life in chronic pain with constant joint instability. I was 6, and sitting in the doctors office in a W banding my fingers backwards so my hand looked like a skydiver. In the 23 years that have followed
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I’m thankful for my early diagnosis

My name is Reavie and I am 16 months old. My mom and dad had never heard of EDS before they had me, although it turns out my mom has it too. We knew something was up when at 6 months, before I was crawling or even rolling around, my arms were covered in bruises.
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SYMPATHY, ACCEPTANCE, & HOPE

Thanks to a great community of other Zebras sharing their experiences and talking to me about my worries the hopelessness has been getting much better. They can’t fix me but at least they help me look on the bright side and make me feel like I am not alone.
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