chronic illness · Ehlers-Danlos Syndrome

“You Look Too Healthy To Be Disabled.” | Well, Jokes On You—I am.

Society tells me I look too healthy to be disabled. My medical records tell me I'm too disabled to be healthy. When the world tries to mute what my body is so clearly screaming at me, I'm left feeling stuck in a painful game of tug-of-war.

Ehlers-Danlos Syndrome

Pages From My Life | Living With Ehlers-Danlos Syndrome

Weakness plagued my body.

   Move, arms. Move.

   Quivering, my muscles made a valiant effort and my arm made a spastic and uncontrolled flail to the side. Not exactly what I was aiming for but the fact that they still could move was good enough.

   Searing pain was spreading from the base of my skull to the top of my head.

   What did I even do to cause this?

Ehlers-Danlos Syndrome

The Importance of Having Friends Who “Get It” | Life With A Chronic Illness

Having a chronic illness is hard. Having a chronic illness with no friends who understand what you're going through? Even harder.  Ehlers-Danlos Syndrome affects every part of my life. Physically, emotionally, financially...it's rough. For a long time I felt isolated from the rest of the world. Whenever I try and explain what I feel each day… Continue reading The Importance of Having Friends Who “Get It” | Life With A Chronic Illness

Ehlers-Danlos Syndrome

Dear Support System | Life With Ehlers-Danlos Syndrome

I can only imagine how difficult it is to watch your loved one deteriorate before your eyes, knowing that there's little you can do to make them better.

I want to take the time to say THANK YOU. The words hardly seem to touch the level of gratitude I hold within my heart, but the only way I can think of to show the thankfulness within me is something like, "aslfjaslkdjfa;lskjdfa;lskjdflsjlfkjdlskjdflah!!!" and that's just not very nice to look at.

Ehlers-Danlos Syndrome

When I smile and say, “I’m fine” |Chronic Illnesses

"Hey! How are you? How've you been?" 
Common questions, ones we hear all the time. The average person can pause for a split second and assess if they're great, ok, or having a bad day. For someone with a chronic illness, it's a complicated question.  Our version of "great", "good", or a "bad day" can be drastically different from most people's. 

Ehlers-Danlos Syndrome

Ehlers-Danlos Syndrome: What’s that?

"prone to frequent dislocations" ...Yes, very true...but what the list doesn't say is that sometimes all it takes is a regular step, lifting a (small) glass of water, a simple roll over in bed, or a hard laugh.

Thoughts

Do You Not Yet Understand?

...As Christians, we should seek to understand Him so that when we meet Him face to face with questions that we could have found answers to with a little bit of work on our ends, He won't shake His head and look into our eyes and say, "Do you not yet understand?"