Just a "zebra" trying my best to live life to the fullest with EDS and POTS...and loving the ride.

Visible Hope

Written by Katie. Posted in Ehlers-Danlos Awareness, Invisible Illness, POTS Awareness

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I love pictures.  They can capture so many memories; so many emotions; so many moments in time.  I have learned that sometimes they tell the whole story and sometimes they leave much of the story out.  

I was going through pictures the other day, and as I got to the pictures from 2 summers ago, I started to relate each picture with a memory.  Unfortunately, they were not the best memories of my life, but what struck me as funny was that no one would ever know it by looking at them.  In many I look tan, healthy, happy, and “slim.”

With Invisible Illness week fast approaching, I thought this would be a timely post to put out there…

The following captions are not to solicit sympathy, but rather to do the opposite.  To make people think.  To help spread awareness.  And to hopefully help make the invisible, just a little more visible.

This was one of my sickest days. It was at my niece’s baptism. I remember whispering to Brad to catch me if I started to pass out.  After standing a few minutes I spent the rest of the day throwing up.  I was in a wheelchair most of the time at this point.

I was only able to eat a bite of that ice cream in my hand. My gastroparesis was so bad, that I hit my lowest weight of all time that week. I was only drinking Ensure at this point.

I always wanted to be skinnier…then I got sick and became skinnier…then I prayed every night that I would one day be able to eat again and put on weight.

This trip to Maryland was the very first sign I was becoming sick. I spent most of the trip doubled over in extreme pain.

This was the first week I was on medical leave from teaching. I relied on my brother to hold me upright so I did not pass out. That night, I was in the ER; dehydrated, dizzy, with a migraine, and extremely fatigued. The ER did not know what to do with me besides give me fluids. They brought up Myasthenia Gravis, MS, and ALS.  It was an extremely scary time.  Two months later I was diagnosed with POTS and EDS.

The moral of my post is this:


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