One Woman’s Rise Above E.D.S.

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One Woman's Rise Above E.D.S.

One Woman’s Rise Above E.D.S.

Ehlers Danlos Syndrome.  Three ugly little words that changed my life, took everything from me, erased years of work and struggle, took away my identity.  Three words that gave me a new life, new purpose, a new appreciation for every day.

Before I ever heard of E.D.S. I was a “go-getter”.   I was a nurse, sometimes working two jobs, in grad school to be a nurse practitioner, raising 4 children.  I didn’t know how to slow down. My identity and my self worth were wrapped up in what I did, how much I did, how much money I made, how hard I pushed.   But then those three words entered my life and I didn’t just slow down . I came to a complete halt.

First, my daughter was diagnosed.  Then I was.  A few years later my other three children were diagnosed. I worked hard and pushed myself and broke my body.  I didn’t know that anything was wrong with it.  I didn’t know that the glue holding me together wasn’t strong enough.   I fell apart all at once.  I had to leave my job that I loved.  I had to drop out of grad school.  I had surgery after surgery to put me together.  I exhausted all of our financial resources and had to rely on others for help.

So much change dragged me into a dark place.  I didn’t know who I was anymore.  I didn’t feel like an important, valuable member of my family because I couldn’t contribute like I had before.  I was a very prideful woman and I had to swallow a bit of that.  I was depressed.  I was worthless.  I was lost.  And I hurt, always in pain.

The old saying is “It’s always darkest before the dawn”.

It is true.

If we hold on, if we make it through the dark times, better ones will come.

On this journey I found an entire family, lots of zebras like me, women going through the same thing.  They lived all over the country and became my sisters. These are lifelong friendships, women that I trust with everything.  We’ve cried together, we’ve laughed together . We meet when we can.  We talk all the time.

I’ve found a new appreciation for my husband and family.  I know that I’m not immortal, we all have an expiration date.  I want to love them as much as I can.  And I have rediscovered myself.  I’ve found my inner artist.  I discovered a love for wood.  I now create art burned into wood and sell it.  I have pieces all over the US and even in Canada.

And I have found purpose, ways to still use my nursing skills.  I spend my free time reading new information, learning more about Ehlers-Danlos and all of its comorbidities.  I teach others whenever they will listen.  I teach doctors, nurses.

I blog about it.  I share information on social media.  And I look for other zebras like me, people who are still searching for a name for their many medical disorders.  I help them find their diagnosis, doctors that can help, treatments, answers.

Ehlers-Danlos is a difficult diagnosis to accept.  It’s a hard disorder to live with.  But, it is not the end. You don’t have to close the door on your life, don’t have to give everything up because of it.  You may just need to step back and look at things a little differently, change how you do things.

You live with it, not stop living.


How do you spread E.D.S. awareness?

Will you share your story?

We would love to hear it.

Click here for tips on how and what to write and where to submit it.


All “Real Life Stories” are written by the subject and contain their original, words descriptions and information.  The Zippy Zebra shares these stories in hope of spreading awareness and offering encouragement for those struggling to find answers or who feel alone.

If you have a story you would like to submit we would be happy to hear from YOU!

We do not offer or receive compensation for any of our “Real Life Stories” posts.  We do this for you, our readers and all those, like us who are looking for answers and encouragement.

For more details on how to submit your E.D.S. story click here.


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