Those of us who live with chronic pain don’t always approach a holiday with the same enthusiasm as others. I struggle with my emotions and increased anxiety as holidays get closer due to the potential issues they may bring on.

To make it worse, it is hard for a person not living with pain to understand what holidays can be like for us, as they are often thinking of adventure, relaxing, and taking a break. Many of us living with chronic conditions are instead wondering how we will endure the long days and change in routine.

Let me give you a small insight into why a holiday might be difficult for a chronic pain warrior.

Doctors Are Off

If a medical emergency happens on an extended holiday weekend, you usually have to see a different medical provider who has little knowledge of your medical trials and journey. I find it stressful to have to go back and walk someone new through the medical history I have already had to endure.

Medications Had Better Be Filled

Have you ever forgotten it was time to renew your prescription? If you hit a long holiday break, your pharmacy may not have normal hours. Many of us take medication to manage our conditions, and if we make the all-too-human mistake of not filling a script in time before a holiday, not being able to get a refill can be frightening.

Missing Out on Activities

Many times, family and friends gather to celebrate holidays together. But if you have a condition that limits your mobility and activities, the thought of once again feeling left out is heartbreaking. Too many times, I have put on that fake smile and waved goodbye to family as they go off on an adventure that I, too, would have loved to join in on. Instead, the private tears fall on my face, as I’m reminded again that I am disabled and not physically capable of joining them due to my condition. During the holidays, this can be especially difficult.

No Physical Therapy

Many of us depend on physical therapy, occupational therapy, or similar services to get through our days. Because I live with Ehlers-Danlos syndrome, I regularly need manual PT to safely return my body’s subluxations into position. It’s tough knowing that during the holidays, if my joints slip out of position, I may have to wait extra days for the office to reopen to get the help I need. The added pain and delayed relief can cause you to lose ground in your pain management.

Added Anxiety

Living with chronic pain adds anxiety to your life, and you have to learn to manage and work around it. Unfortunately, knowing you may not have the same access to help during the holidays that you would have during any other week adds the fear that something might go wrong during this time. 

Traveling Concerns

When you have a chronic medical condition, traveling can bring up any number of challenges. We may be thinking about things like:

• How do I attempt to sleep in a bed that can’t be elevated like mine at home?
• Where do I find food that I can metabolize?
• How do I get around the airport, train, or bus station with all the medical items I must take along? Many of us are unable to carry heavy luggage or equipment, or walk long distances—and some are unable to walk at all. 

The holidays introduce these challenges and more, but here’s what I’ve learned: There is nothing worse than wasting time thinking about what might go wrong, and then looking back to realize it was wasted time and emotion.

We have to work hard to let the days flow—finding a balance between being prepared but not spending all our time worrying about what might go wrong, so that we can address any issue when it actually comes up.

This sounds easy, but we all know that is not the case. Being more limited with a chronic condition makes it harder to be more carefree—especially during the holidays. May we all find a way to take on what comes and make the best of what we face.

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.