Imagine this:

You’re walking fine one day, and the next you can’t because your hips, fibulas, or tibias are subluxed, or partially dislocated.

You hug a dear friend, put a bag over your shoulder, or sit at a different angle, only to suffer pain from a subluxed neck, shoulder, or ribs—or even a dislocation.

You enjoy a meal out, only to have your jaw sublux—or, days after, your gut reacts to the food.

You have energy one day, and the next you don’t. You take over-the-counter pain relief, but you get no relief.

…And the horror goes on and on.

Such is the disjointed life of living with Ehlers-Danlos syndrome (EDS), a connective tissue defect you are born with. As you age, life becomes very unsettled, and you never know what each day will bring. One simple twist or turn, taking a medication that is incompatible with your system, eating a good food your body is unable to metabolize, or that simple loving hug from a friend can bring pain, shifting of the bones, and a change in your ability to live life normally.

Now, imagine this is your daily reality—and on top of it all, people judge you, believing you are making everything up. “It must be in your head!”

This is also part of living with EDS. Almost all of us have heart-wrenching stories of people deciding that because they don’t understand our condition, we must be making things up for attention. I have found this judgment to be the most difficult thing I have to deal with—the final straw when I am already scared, frustrated, living with an out-of-control body, and trying to live life to the best of my ability.

Getting smacked down by those who don’t understand the reality of coping with EDS adds even more emotional pain to our lives. That hurt is deep and difficult to compartmentalize. We are experiencing our lives rapidly unraveling, with a new version of us emerging and our “normal” a thing of the past. At a time of such changes and heartbreak, as we learn this condition will progress and never go away, picture us also having to cope with our loved ones hurting us, pushing us away, minimizing or disbelieving our experiences, or judging us. Can you imagine that?

Now imagine this reaction coming from all corners—loved ones, family and friends, but also employers and even the medical professionals we turn to for help and answers—making this journey even more of a struggle.

So this is my advice to those who find it difficult to understand or believe the reality of living with chronic pain from a condition like EDS. Why don’t you learn, ask questions, educate yourself, and help encourage and support us? We miss the person we used to be and are attempting to hold onto that person, despite the constant interruptions of normalcy we face.

Appreciate the times we can join you, but understand we may tire quickly. Recognize and be proud of the efforts we are making to be good sports, living with daily uncertainty and lifelong pain. Listen to and validate our experiences, even if you don’t understand them. Have a heart and support us instead of tearing us down. It makes more of a difference than you know.

–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 50 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.