The Road To An EDS Diagnosis: After More Than 60 Years, I Am Now Proud To Be Called A Zebra!

My whole life I thought everyone felt as lousy as I did. After years of dealing with my husband’s lupus, heart disease and cancer and my daughter’s Multiple Sclerosis and Ehlers-Danlos Syndrome, I found out I also have EDS! Talk about a backward way to be diagnosed.

All the doctors I ever went to told me I was just lazy and they never took me seriously. I gave up even talking or going to doctors because it was such a frustrating experience. When my daughter was diagnosed with Ehlers Danlos Syndrom (EDS), we started doing research.

What is Ehlers-Danlos Syndrome?

We learned that it is a genetic connective tissue disorder. Except for rare cases where someone is the first in their family to develop the condition, since it is hereditary it is passed down from parent to child. Ohio State University doctors examined me and decided I was the one who brought these wonderful genes to the table.

Wow! Things have started to make sense now. I am 64 years old and was retired before I knew there was really something wrong. I really shouldn’t be happy about having EDS, but having a diagnosis has changed my life. I now have a doctor who actually listens to me and treats what I have instead of being written off as a whiney woman. I swear if one more doctor had said, “honey you just have to exercise more,” I think I would have punched them.

As a child, we did physical fitness tests at school. I always failed miserably. (Self-esteem killer) I always remember my hips and legs feeling like weights. I was the kid who was never picked for any team sport. (Another self-esteem killer.)

My experiences have made me very aware that we should be very careful about judging others. We do not know what has contributed to another’s situation. I realize in looking back, that I was always judged by family, teachers and doctors. I wish I could go back to some of these people and just say “I told you something was wrong”.

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Image via Pinterest

 

Having a diagnosis does not change all my aches and pains, but it changes how I feel about myself.  It gives me validation for all the things I have struggled with all my life.  I have to thank modern technology and the internet for making it possible to research.  I can learn all about EDS and feel really knowledgeable when I go to doctors now.  (Self-esteem builder.)  I can advocate for people with chronic illnesses and disabilities.  I can talk to people all over the world who have EDS.  I am empowered!

The symbol of EDS is the zebra, and the awareness ribbon is zebra striped as well.Why the zebra? In medical school, doctors are taught that “when you hear hoofbeats, think horses, not zebras.” EDSers are medical zebras. We may be rare, but we most definitely exist!

Today I can say I’m proud to be a zebra.

 

zebra

Image via Wikipedia


Featured image courtesy of Wikipedia

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