At the age of 54, I began a journey in life that I never imagined would be mine to take on.
After years of living with unexplained pain, experiencing strange reactions to food or medications, and frequently finding myself getting hurt with simple movements, I was finally diagnosed with a condition I had been born with called Ehlers-Danlos syndrome. I was relieved when a doctor figured out what was wrong, but then, after going home and reading about this condition being progressive and incurable, I went from excitement that I would finally fix myself to wondering how I was supposed to endure this for the rest of my life.
When any of us is faced with chronic pain, we have to find a way to first mourn our losses and then, in time, figure out how to pick up the pieces and try to move on. I thrive, as I am guessing you do, when I feel that I have purpose and meaning in life. I had loved what I felt was my purpose: Being a mother to four sons, in a happy marriage, working as a middle school teacher, living on a small family farm with many animals. I was a high school swim coach and master swimmer, a gardener, a lover of reading, taking trips to the ocean, walking on the beach—and so much more. But as my condition progressed, many of those joys began leaving my life.
I had too many procedures and too much pain to continue to be able to be effective in the classroom. I had to learn to cope with being reactive to certain foods and medications, and facing surgery after surgery to try to correct the damage my defective collagen created. I had to adjust to four years living in a wheelchair. The tendency of my joints to sublux, or partially dislocate, and the pain in my neck made walking on the sand, reading a book, and even chewing painful.
But I still had a life to live. And I had a decision to make: Do I wallow in all this and let Ehlers-Danlos define me, or do I find a way to regain a new purpose and meaning in my life?
It is daily work to try to feel purpose when you are confronted with conditions that cause chronic pain. The disruptions in your life can be heartbreaking, but at some point, you have to accept that this is the new version of your life. What can you do to help you find fresh purpose and meaning in your life?
I have replaced so much of what I found pleasure in doing with new adventures. I joined the U.S. Pain Foundation initially as an advocate, and eventually became co-director of Cannabis Advocacy along with my husband. I learned to use my voice in my state and even in Washington, D.C., to speak out about issues I have a passion for. I work alongside others in our community with an Ehlers-Danlos syndrome support group to help pass along information we have learned that might help others cope with this under-recognized condition. I have adjusted my swimming strokes and technique due to my fused neck and limited mobility in my arms, but I am still in the pool, feeling the joy of the water and exercise.
I know my sons are watching how I am taking on these challenges. I want them to respect me and understand that no matter what comes of their lives, if we work hard enough, we can still find joy and happiness.
Your plans may not be the same as they used to be, but it’s still worth it to make new ones. May you find the strength to live your life with dignity as you, too, age with your chronic pain. It’s not easy, but there are many out there rooting for you!
May life be kind to you…
—by Ellen Lenox Smith
