Laura’s Journey With E.D.S.

My name is Laura, and I’m 32 years old. I’ve had chronic pain since I was 14. I’m an artist, and I love to make stuff… but sometimes I struggle because of my hands. This is my story.

I have I a connective tissue disorder called Ehlers Danlos Syndrome.

It affects how my body produces collagen, which is basically the glue that holds our body together.

There is little to no knowledge of this disorder in the US.

It’s not even on Rheumatological diagnostic sheets.

90% of those who have it, will never get a correct diagnosis as it is so under diagnosed and easily dismissed.

Each one of my joints is hypermobile, and I partially dislocate many of them on a daily basis.

On top of E.D.S., I have arthritis throughout my whole body from the wear and tear of them constantly shifting.

This not only affects my joints though. It also affects my GI system, as well as my lungs, and my skin. I bruise so easily I look like I have been beaten at times, and I have such severe asthma that my specialist has literally told me I’m one of his most severe cases. My hunger response is overactive, and my entire GI system constantly acts up. I also have migraines, trapped nerves in multiple parts of my body and spasms constantly.

The worst part of this? There is no cure.

This disorder has affected me mentally and emotionally, as I have both panic disorder and generalized anxiety as well as constant run-ins with depression.

What is even worse is, how the reactions to it have affected me. I have had people say so many things because they don’t understand. And that’s ok if they don’t. But, it is not ok to belittle, and continue to insult people who are affected by it.

It has affected me physically, by slowly breaking my body down. I almost had to drop out of college from it, and struggled the whole way through, while being told I’m faking being sick. I’ve had to walk in constant pain for close to 18 years, not knowing what it was or being able to get proper help. I’ve had to leave multiple jobs from it. I am now permanently unable to work from it, as my joints slide and trap nerves constantly. Sitting or standing for any length of time is excruciating. I have sciatica that comes and goes as my SI joints move and both trapped nerves from my vertebrae and an ulnar nerve that likes to slide out of place.

One of the hardest things to deal with is how unpredictable my pain level is. One day I could be a 3 and have enough energy to clean my whole apartment and go to a park. The next, out of nowhere, I can’t walk and fight to make it out of bed because my pain level shoots up to where I’m unable to function. Thankfully, I have a very supportive husband who loves me and walks close by me in it.

I would write how this has affected me spiritually, but I’ll leave that for another post, possibly a letter. Because I don’t want to overload this one. While it has affected me negatively every other way, spiritually it has affected me deeply, and in many ways positively.

May is EDS awareness month. I am writing this in hopes to spread knowledge and awareness to help others, and hopefully find a cure. So, if you see any of my awareness posts, please feel free to share them. Any sharing will help get the word out. You never know, you may know someone who has it and has been misdiagnosed.

Share love. Spread hope. Share awareness.

Laura originally shared her story on her own face book page and then graciously agreed to allow us to post it with these great photos on The Zippy Zebra in our “Real Life Story” series to help spread awareness.

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Tags: Awareness, Chronic Pain, Collagen, Dislocations, EDS, Ehlers Danlos Syndrome, Hypermobility

Real Life Stories | TinaMiller | May 7, 2016 11:23 pm

1 Comment

By Hannah @Sunshine and Spoons, May 9, 2016 @ 11:45 am

Thank you for sharing, Laura!