Sue lives in Saco, Maine, with a diagnosis of Rheumatoid Arthritis (now in remission). Realizing that she is not alone in her experience of chronic pain, she started the Chronic Pain Support Group of Southern Maine.
Listening is a Specialty: Considering the Importance of Communication in the Lives of Chronic Pain Patients
By Tyler R. Vunk
As a publisher, author, and graphic designer, Susan considered herself to be an expressive person. A communicator by trade, she could always describe her experience of the world with ease, piecing together minute details, offering others a view that they might not have otherwise known. In 1991, when a bout of shoulder pain caused her many sleepless nights, Susan went directly to her doctor’s office, explaining the minutia of her symptoms with great fluency. She found her attending physician to be responsive to her story, and, having been given a diagnosis of bursitis, returned home feeling as though she had been listened to. “We had communicated well,” recalls Susan, “up until that point.” However, a short time later, her knees began to swell, as did her hands; searing pains appeared in both her elbows and shoulders, all of which led to a new level of excruciation—one that was literally screaming for a stronger intervention. Yet, without sleep and in constant agony, Susan pushed forward with her daily routines, continuing to go to her office even though the act of doing so was beyond challenging.
One evening, she was on her way home from work; stopped at a tollbooth, Susan was shocked to find that she couldn’t turn her wrist over in order to take the change from her fare. Then, in an unexpected move, the tollbooth operator innocently grabbed her, and turned her wrist right-side up, dropping the coins into her strained hand. “I almost passed out from the pain,” says Susan. There, on the busy highway, alone with her burden, she was made to digest the limitations that surrounded her every move. Revoked of her independence, Susan would soon rely upon her husband and teenage son for the majority of her basic needs. She could neither drive herself to work, nor open a door—sometimes she would be trapped outside, waiting until one of the other tenants could afford her with an entrance. After each long, emotional day at her job, she would have no choice but to come directly home, immediately taking a dose of aspirin, and collapsing onto the living room couch for the rest of the night.
Even though she continued to see her doctor, Susan found it increasingly difficult to explain how bad her pain was. For one of the first times in her life, she could not find her words, which only seemed to make her physician grow even more frustrated with her. “I think he just thought I was a middle aged woman belly aching about aches and pains,” recalls Susan. Seemingly without options, she went ahead with her prescribed knee surgery, and then immediately began a round of physical therapy. Dedicated to her regimen, Susan kept going to her treatment sessions, even though they appeared to be making her worse. “My knees would feel like they went out of joint,” she said, while looking back on her experience, “like you had to put them back in place—it was extremely painful.” After three months of fruitless visits, the physical therapist knew that Susan’s pain was not going to get better without a different plan, and recommended that she request a rheumatoid arthritis test from her doctor. Susan, fearing a death sentence from bone cancer, was told that her results were, instead, suggestive of rheumatoid arthritis (R.A.). While relieved to have finally put a name on her debilitating state, she admits that the moment was bittersweet, as she knew little about her given disease, and even less about how to go about healing herself. In what she would later describe as two of the “longest months of her life,” Susan elected to stay proactive, arming herself with as much information as she could find on R.A. while she waited to see a specialist.
Although her new physician was much more knowledgeable about her condition than her previous doctor, Susan refused to blindly go along with what was being asked of her. “He was an expert in R.A., and in the drugs that would help my body’s symptoms,” she says, “but I knew my body better than anyone else.” Even though the specialist was in favor of an aggressive treatment plan, he decided to listen to his patient, opting instead to begin with a less invasive protocol. Even though the intermediate pharmaceutical approach was not effective, the trust that was developed during those early days allowed Susan to follow her doctor’s advice. After a bit of time and a lot of patience, her body responded to the stronger medication: the swelling went down, and her pain and fatigue symptoms lessened. While the cartilage in her bigger joints had been irreversibly damaged, Susan soon found herself walking again, and was able to enjoy the ambiance of a neighborhood fairground—an emotional event that moved her to write her doctor a note of appreciation. “I was so grateful to him for diagnosing me,” recalls Susan, “for his skill, and his manner, and believing me.” “He treated me as an equal, and we’ve had a great relationship ever since.”
In 1993, two years after the start of her illness, Susan was still experiencing a tremendous amount of pain. During a family outing at the symphony, she was exiting her car when she stumbled on the curb, jarring her weakened knees. Although her son was at her side to assist her, others walked by as she winced, avoiding the sensitive scene altogether. And, as she stood by her family, trying to regain her composure, a homeless man walked over to the group from his perch on a nearby stoop, looked Susan right in the eye, and, in a gentle, soothing voice, said: “I’m sorry you’re in pain; I hope you feel better soon.” “I was just blown away,” recalls Susan. The fleeting moment of understanding that she had shared with that caring individual prompted her to create a support group for those suffering from chronic pain—a place where she, and others like her, could cast aside their stoic fronts, and freely discuss their day-to-day issues. Although the gatherings were small at first, Susan points out that there was an empathy present in those rooms that she had only previously experienced with her immediate family. As word of the meetings began to spread, more people attended, motivating her to seek out a sponsorship from both the American Chronic Pain Association and the Arthritis Foundation. “I’ve been very grateful for the members of the pain support group for sharing their lessons with me,” says Susan, reminiscing about her fifteen-year role as group facilitator.
Now, at sixty-three years old, she is still actively pursuing her health, both by continuing to research her illness, and advocating for her specific needs. Having recently returned from Washington, D.C., Susan participated in the Arthritis Foundation Summit: a gathering where she, and many others, lobbied legislators in support of better access to treatment, additional research funding, and a loan program initiative designed to increase the number of rheumatologists nationwide. Two total knee replacement surgeries have helped alleviate a great deal of her pain. And with the relationships she shares with both her physical therapist and specialist, she is very willing to follow her caregivers’ recommendations; yet, Susan has not forgotten about the rocky path she had to endure before finding them. While she remains hopeful that the electronic age will bring about less disconnect between medical professionals and their patients, she still feels that doctors are neither effectively speaking to one another, nor involving their pain patients in the process of managing their wellbeing. “You can’t be an expert in everything,” says Susan. “Look at the patient not as a patient, but as a person and a partner—everyone is unique.”
About the author - A native New Englander, Tyler R. Vunk is a musician, ghostwriter, and national award-winning essayist. After receiving his B.A. in Music from Wheaton College in 1999, he worked as a musician for over ten years, playing and recording with various acts throughout Cape Cod and Boston. Although born and raised on the island of Martha’s Vineyard, Tyler currently resides in Southern Maine where he attends the University of New England, pursuing a dual degree comprised of both Neuroscience and English—an odd combination that, to his own surprise, actually encourages two of his favorite pastimes: learning new things and inventing inappropriate mnemonics.
Please leave a comment – do you live with chronic pain? What helps you?
Heal/Tell Sue: Part 1 of 3
Video Portrait of Sue: Part 3 of 3
Learn more about the 11th Annual UNE Interprofessional Spring Symposium: the Science of Pain and the Art of Healing, April 4, 2013, Biddeford Maine.