Now at the age of 75, even after years of living with Ehlers-Danlos syndrome, I still get embarrassed and disappointed with myself when things feel overwhelming with my chronic, painful condition. I can easily transition from feeling reasonable to wondering if I will make it to tomorrow. 

I have spent years carefully living my life to stay alive and as safe as possible. This has meant:

• Not being able to express my love toward others by hugging them, since that could cause my ribs or spine to sublux (partially dislocate) or even completely dislocate.
• Having to avoid walking on the sand, since my legs would sublux.
• Not being able to travel to visit friends and family without help.
• Being unable to drive at times due to complications with my twice-fused neck.

The list goes on and on, but I do my best to avoid dwelling on the negative and instead search for the positive, trying to rise above the next crisis.

Earlier this year, I was standing inside my fenced garden, assuming the gate was locked to keep out our two dogs. While I was watering the plants, my service dog ran over to get sprayed with water from the hose, a common routine. But this time, I didn’t realize the gate was unlocked—and as she tried to get as close as she could to the water, she hit the gate with her weight of 60 pounds, swinging it open and ramming it into my chest.

The results were a disaster—requiring over a week of manual physical therapy appointments to try to reposition my ribs. The challenge of this condition is that we not only sublux and dislocate easily, but we also rapidly develop inflammation. So despite all of the work of each appointment, within hours, everything slipped back out of position. And along with that came the emotional crash, as I wondered if I could ever beat the damage and increased pain, added to the daily pain I already navigate.

There are so many of us living our lives the best we can with conditions we didn’t ask to take on. Take a moment and ask yourself: If you had to cope with a long-term medical condition, would you be able to stay positive all the time? I am guessing you would say no.

Please understand—those of us living with chronic pain need understanding, compassion, someone to sincerely ask how we really are, and a space to share when we are scared, especially when we hit a time that is just too overwhelming. Please don’t be one of those people we have all had to cope with who judge us, claiming the pain is all in our heads. Hearing those words is so hurtful, unproductive, and untrue.

Be kind, care, listen, and know that the people in your life who experience pain need you more than you may realize. Are you making a difference in another’s life? May you be the one to reach out!

May life be kind to you…

—by Ellen Lenox Smith

About the Author:

Ellen Lenox Smith has emerged as a leading voice for patients living with pain. Currently, Ellen serves as Co-Director of Medical Cannabis Advocacy for the U.S. Pain Foundation and is a member of its Board of Directors. She is also active with the EDS RI support group.

Prior to patient advocacy, Ellen was a longtime middle school social studies teacher. She has been married for 53 years and is the proud mother of four adult children and grandmother to five grandchildren. She also is the author of two books, an organic gardener, and was previously a master swimmer and high school swim coach.