Life knows how to jolt you, especially when you have chronic pain. One moment can change your day, possibly weeks, or even the rest of your life. One moment you are feeling pretty decent, and then one twist, turn, jolt, or squeeze can turn that feeling on a dime.

For instance, I was working out a few years ago on a stationary bike when I suddenly woke up on the cement floor, tangled up with the bike, which had fallen on top of me. I had no warning this was about to happen. While in the hospital, I learned that my heart had taken a pause, causing me to pass out.

I was left wondering: How would I go back to living my life and feeling safe, when the cardiologist warned me this would happen again?

The good news was that a loop recorder inserted into my chest would give doctors the answers they needed when it happened again, but how was I supposed to live safely? My husband came up with the idea of getting a watch that would report where I was if I was alone when I passed out, and it would call 911 if I did not respond to their contact with me. That allowed me the freedom to go back to living instead of walking around in fear.

This was a huge lesson for me. It reminded me that this is my life to live, and I need to live it—and not wait around, dreaming that everything would return to normal. Living with chronic pain and Ehlers-Danlos syndrome, a progressive condition, meant there would never be a total return to normal. So I needed to make a choice to learn to live the life I was given and not wait, assuming things would improve. I could choose to wallow in my losses, or I could learn to live with what was still a part of me.

Looking at my life today, I have lost so many abilities due to my conditions and chronic pain. I can’t walk on sand without my hips dislocating. I can’t chew anything too hard or crunchy without my jaw subluxing. I can no longer read a novel due to my neck subluxing. I can’t hug someone without my ribs and sternum subluxing. I can’t climb a ladder in the pool without dislocating my hips. And the list continues.

But that is not what I want to focus on—I want to focus on living life today. I want to be grateful each day for what I do have! I don’t want my conditions to break and define me. I want to concentrate on keeping myself physically and emotionally strong, living with purpose and meaning. It is daily work, but the rewards are worth it, because this goal keeps me in the present. I try to not focus on “poor me.” Does it always work? Of course not; setbacks can be heartbreaking and usually bring about increased pain that can, at times, feel just overwhelming. But I keep returning to this goal.

I understand the disappointment of living with chronic pain. I know the constant work it takes you to get through the days, and how deeply you feel the loss of the person you once were. I understand how much work it takes to get the medical help you need, to be listened to instead of judged.

But this is your life you have been given to live, so I urge you to work to live each day as a gift, despite your tremendous challenges. Our time on this earth is limited, so find ways to give your life purpose. Reach out to others who are also struggling. Educate your medical team. And when you do come across tips or treatments that are successful, pass them along; you never know just how much it might help another person. Advocate for yourself and help others to do the same.

You and your life matter. Know you are not alone, and that despite your pain and frustrations, you will have an impact on others and be remembered as a fighter who lived life with dignity and purpose.

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.