top of page
User Name

Living Life with A Chronic Illness: Ehlers Danlos Syndrome

How Chronic Illness Impacts Ellen's Life

Living life with chronic illness is beyond frustrating... and honestly, beyond what most healthy people can completely understand. I say this with all the respect in the world. It is simply a reality. Unless you have walked in the shoes of chronic illness... you can not understand the weight of it that one must carry... now imagine being 13 years old!!! Ellen told me the other day that her pain has "erased" memories from her. When she tries to think of her childhood... it is a massive blur. She said ... the memories she does have... feel like she is standing beside herself... watching. That is what pain does. It slams into you, knocks you to the ground. It weighs down on you with a heavy that is like no other... It alters your perception, darkens your view, and leaves you cloudy. Day after day ... after month... after year... We keep searching for "help" for her. I pray we can find it. We started having "the talk". Next week we meet with the surgeon. Ellen has already seen the GI and surgeon regarding her ongoing stomach issues. "Plans" are coming in the form of motility tests in early January while she is inpatient at Children's Hospital. We have already been told surgery is inevitable. We have started discussing some of the possibilities and what each will mean for her. She asked me if it will take the pain away. I don't have an answer for that... and THAT breaks my heart. I certainly hope it will. She is not interested in having a bag. She agreed to a resection tonight... as that is the nearest thing to "normal" we have as an option.


At this very moment in her life... she "should" be thinking about her friends, her favorite books and weekend plans. She "should" be completing science projects and looking forward to the next school dance. Instead... she is planning what her life will look like with less of her large intestine... contemplating life with possibly less pain... agonizing over another surgery... fearing recovery time and dreaded time in the hospital. She asked to sleep with the lights on tonight. Breaks my heart.

You can join Ellen's Journey with EDS at https://m.facebook.com/empoweringellen/

8 views0 comments

Comments


Collapsible text is perfect for longer content like paragraphs and descriptions. It’s a great way to give people more information while keeping your layout clean. Link your text to anything, including an external website or a different page. You can set your text box to expand and collapse when people click, so they can read more or less info.

Country:

Email:

<Email>

Author:

<Athors name>

More stories by this Author

Beneath The Tracksuit

Andreea Lichi

A Mug Designed with Everyone in Mind

Andreea Lichi

You Only Get One Life

Andreea Lichi

Finding Strength

Andreea Lichi

Voiceitt

Andreea Lichi

My story

Andreea Lichi

My HSCT Story for MS

Andreea Lichi

My Wheelchair was stolen by passengers

Andreea Lichi

Champion in My Own Arena

Andreea Lichi

My story

Andreea Lichi

12 hours that changed my life

Andreea Lichi

My Chronic Illness Story

Andreea Lichi

That bunny is just like me!

Andreea Lichi

Finding My Passion

Andreea Lichi

Start walking by mylself

Andreea Lichi

Belinda’s Accomplishments

Andreea Lichi