By Tom Norris She had rehearsed it in the car on the way to her appointment. The three things she wanted to say, in...
Blog Articles
Frustrating. Lonely. Exhausting. Three Words That Capture Life With Pain.
Living with chronic pain can feel impossible to describe. And it can be truly difficult to make others understand what...
Lonely Hearts: A Poem
By Molly Kamper “Kings depend on lonely hearts to trust their gilded lies.”* How do you get a Lonely Heart? By...
More Than Tired: The Exhaustion of Living With Pain
By Nikhil Sadavarte I fell to the pillow. I was exhausted. It had been a long day and a long shift at work. My eyes...
Boundaries Without Guilt: Learning to Say No When You Live With Chronic Pain
By Alina Savulescu “No” is still the word I struggle with the most. Even now, after learning what ignoring my limits...
Turning the Tables: Becoming a Caregiver to My Caregiver
For years, my husband has been helping me live my life with as much dignity as possible as I deal with Ehlers-Danlos...
I Asked for Water—And Got So Much More
By Kari McBride It started with a quiet “Hmmph” and crossed arms. Then came the audible signs of frustration....
When Acceptance Isn’t Giving Up
By Kari McBride It was the phone call from the school nurse’s office that triggered a chain reaction. On the other end...
Storms Bring a Painful Reminder of Our Disability
Living with a progressive, painful condition is a challenge, to say the least. I have learned that if I try to focus...
Growing Beyond the Lines I Thought Pain Drew: What Leading a Daily Support Group Has Taught Me
By Michele Rice Living with chronic pain has a way of quietly drawing lines around your life. Some of those lines are...
It’s Only One Mile: What I’ve Learned About Pacing
By Kari McBride “It’s just one mile. If you pace yourself, you can improve your time.” It was my freshman year in high...
New EDS Patient: Where Do I Begin?
Did you recently get diagnosed with Ehlers-Danlos syndrome (EDS), and feel overwhelmed and confused about where to...