Contributed by: Sue
Reviewed by: Kevin L. Zacharoff, MD, February 2013
When you’re hurting physically or emotionally, it can be hard to find meaning and purpose in everyday life. You might ask yourself, “Why me? Why now? There’s so much I want to do, but the pain is all I can think about.”
Meet Sue. She’s been living with rheumatoid arthritis (RA) and fibromyalgia syndrome (FMS) for over 18 years. She lives in the southwestern part of the U.S., and has a career that brings her joy and allows her to travel around the country. In this Voices of Experience article, Sue shares how her spiritual journey helps her manage her chronic pain.
How has your rheumatoid arthritis and fibromyalgia pain affected your sense of life’s meaning and purpose?
When I was diagnosed with RA and FMS, my children were seven and nine years old. I had always been an active woman, and my kids only knew me as the “on-the-go mom” who played basketball and went canoeing and camping. That all changed when I got the diagnoses of RA and FMS. Getting the pain under control was a huge challenge, and my days of being the “active mom” came to an end. This transition was really hard for me and my family. I wondered, “What kind of a parent can I be like this? What kind of woman am I now if I’m not ‘active Sue’?” The family still went camping, but I couldn’t pull my own weight on the trips. I couldn’t haul water or pitch a tent on my own. I was kind of lost and worried about who I was becoming.
I’ve always been a person of faith, and I’m an ordained minister. I’ve coached others through illness and distress, but I naively thought that my devotion and career choice were protective in some way. Here I was asking the same big questions. Was God punishing me? What had I done wrong to deserve such pain? When I was diagnosed in 1990, the treatment options were more limited for RA and FMS than they are now. My provider at the time said, “Get used to this way of life—this is it from here on out.” This dim outlook added to my distress and magnified my anger and uncertainty.
After sitting with those angry feelings for a while, I decided that that a diagnosis wasn’t going to define me. My faith reminded me that I was more than any diagnosis or disease, and I stopped being afraid of who I was becoming. That was a turning point for me. I also found a physician who offered other types of treatment plans, and most importantly, who saw me as a whole person. Whenever I visit this physician, he asks: “What’s new in your life? What changes are you making? How’s your spirit?” This holistic approach has been essential in building a more integrated self-image. I’m a person with pain, hopes, kids, a mortgage, a garden, a family, and career that I love—I’m not just an RA/FMS patient.
What do you do differently in your day-to-day life now? How do you maintain that sense of meaning and purpose?
Not everybody is religious, but I believe that everyone is spiritual. I believe that spiritual distress occurs when people wrestle with meaning and purpose. Fighting the acceptance of a health challenge can definitely cause distress. I don’t agree with the notion that God doles out diseases as a punishment, or to teach people a lesson. Hard times are a part of life for all human beings. Staying spiritually connected is a core value for me. Whether people call that connection “God”, a “higher power”, or something else, it’s that connection that keeps me grounded and helps me find meaning and purpose in life.
I maintain my sense of meaning and purpose in a number of ways:
I remember that I’m a spiritual being of worth and value
I keep a “spiritual tool chest” to manage daily life
I stay connected to a religious community
I engage all my senses in ways that feed my soul
I am committed to daily spiritual practice
My spiritual tool chest is like the medicine chest that we all have; there are tools inside of it that help me take care of physical and emotional challenges. Some items in my spiritual tool chest are:
Prayer and meditation
Works of service for others, such as crocheting. I enjoy crocheting—it helps my hands stay limber, and I’ve found a lot of joy and satisfaction in making blankets for premature babies at our local hospital.
Connections to friends – I like to see how they’re doing, and I ask them to pray for me when I’m not feeling well.
My faith community is an important resource for me. It’s a group of like-minded people who reflect on the big questions of life and provide support to one another over the long haul. I go to church services regularly, but sitting for extended periods can be uncomfortable. I walk around in the back of the church during the service, or do whatever I need to do to be comfortable there—and I’m fully accepted by the rest of the congregation. Throughout my life, I’ve learned a lot from faith traditions other than my own. While my core beliefs remain constant, I’m grateful to learn about other ways to access my inner world. I didn’t grow up practicing meditation, but learning to meditate has been a wonderful way to slow down and tune in to the things that feed my soul.
I’ve also found that engaging all five senses keeps me spiritually connected. For instance, the smell and feel of the dirt when I am gardening is pure joy. I listen to music, I play the piano, I volunteer my time, I do crafts, and I exercise in ways that work for me. I may not get to be the active/athletic woman that I once was, but I’ve found that movement and exercise actually helps me with pain flares. I get out in the garden with a special bench that lets me get up and down easily. I use soft-grip gardening tools. I used to feel defeated when using assistive devices—it represented a loss to me, like I was giving in to the pain. Now I see those devices as a means to an end. If anything lets me live a fuller life, I’ll use it. I focus on doing the things I can do, and I do them.
I’m committed to a daily spiritual practice. ”Practice” is something that I actually do—it’s not just an attitude or outlook that I’ve adopted. It helps ground me in something beyond myself and my physical needs. My husband and I light two candles every evening: one to pay tribute to our daughter who was killed at age 17 in a car accident nine years ago, and the other to honor people who live with pain.
Finally, my work as a chaplain and educator has allowed me to use my experiences for a larger purpose. I’m an advocate for people with pain, and I work with other professionals who are committed helping people manage their pain. I’ve grown to see all the parts of my journey as gifts. The physical and emotional pain has taught me to slow down and engage in important ways. As Albus Dumbledore from the Harry Potter series said, “Happiness can be found, even in the darkest of times, if one only remembers to turn on the light.”