Reshaping My Life through Polymer Clay
In spring 2002, sudden and unrelenting vulvar pain ended my work as a freelance textbook copyeditor and proofreader and interrupted my primary career as a practicing artist. Severe pain disrupted my focus and made concentrating difficult. Sitting, especially if it was prolonged, increased my pain so that driving, working, and participating in family and social activities became impossible. Even walking increased my pain. My burning, stinging vulva was always at the forefront of my thoughts, always intruding on work, relationships, social activities, clothing choices, and life in general.
Since then, like most women with this disorder, I’ve experienced many frustrations and setbacks. Getting diagnosed took six months with doctor after doctor classifying my symptoms as “imaginary” and offering little in the way of relief of self-help measures. Even armed, finally, with a formal diagnosis by a renowned specialist, I still cannot find a compassionate and understanding primary care doctor willing to learn about how vulvodynia is impacting my overall health. My experiences trying to get help in the US health care system have left me angry and distrustful of the system and its providers. Many of the treatments prescribed didn’t work at all. Some made my symptoms worse. Others caused debilitating side effects–severe nausea, rashes, fainting, blurry vision, weight gain. Many were expensive and not covered by insurance. During my first three years with vulvodynia, I was constantly tired and spent many, many days in bed.
Despite my relief at finally getting a diagnosis, the prospect of no cure and a lengthy period of trying different medications and therapies seemed especially daunting. I yearned for my life before vulvodynia. Activities that I once took for granted were now painful and exhausting. Some activities, like canoeing and biking, I have avoided altogether. Even travel, when it involves sitting for a long period of time, can cause a painful and lengthy flare-up.
Not being able to work involved a loss of identity, especially in a society where our work defines who we are. It was apparent that vulvodynia would always limit my functioning in some manner, which made my working life feel far more uncertain. How was I going to be able to move forward and live a productive life when even a simple activity like sitting was impossible without excruciating pain?
It was easy to forget that my life before vulvodynia had been far from perfect. Life always presents us with obstacles, challenges, and limitations whether we’re ill or not. We like to think we’ll be healthy forever, but injuries and ailments are a part of every day life, especially as we age. Life hands us things we don’t expect or want, and doesn’t give us the things we do want. Life is always throwing us curves that affect what we can do and what we can achieve. But in the midst of so many daily challenges, I wasn’t thinking about this.
I felt isolated and alone with vulvodynia. Because I “looked” healthy and had no outward signs of pain or illness, many people doubted that I was ill. My pain levels were unpredictable; some days I could engage in everyday activities while on other days I had to forgo commitments. Family and friends struggled to understand the limitations vulvodynia placed on me, or in some cases, barely even tried. Finding people to talk to who didn’t cringe when I said the word “vulva” and turn away when I talked about my persistent pain was tough. Even being a patient was tiring, what with multiple appointments, decisions about treatments, medication side effects, and medical bills, all while coping with severe pain on a daily basis. Dealing with chronic pain coupled with the daily challenges of living was physically and emotionally exhausting. In my darkest moments with vulvodynia I felt overwhelmed and hopeless.
My first step out of this dark time was to find community. I joined the National Vulvodynia Association, volunteered to become a support contact, and started a support group. By sharing my struggles with other women, giving support, and learning from our shared experiences, I began to realized that continuing to live a productive, enjoyable life meant that I had to come to terms not just with the pain but also with the limitations imposed on me by the pain.
Accepting how the pain was limiting my life was not easy because I had lost so much. Dwelling on the uncertainties and constantly resisting and trying to escape from the pain was depleting my energy. I had to commit to accepting and being present with the pain. This did not mean that I stopped treatment or gave up on the possibility that the pain would diminish. Instead, I began to understand that my happiness each day was not dependent on this happening. Gradually I began to shift my focus to the positives in my life, especially my enjoyment of the creative process.
For as long as I can remember, creative activities have always been an important and necessary part of my life. Before vulvodynia, I was actively creating in several artistic mediums–drawing, making artist’s books, and creating collage and assemblage. I also had been making polymer clay beads and jewelry for fun and relaxation, and to give as gifts to family and friends. Although pain with prolonged sitting and ongoing fatigue limited my ability to continue to work in all of these mediums, I continued to design and make polymer clay beads and jewelry because it was relaxing and gave me a sense of purpose and identity. As I continued to make polymer clay beads and jewelry, I began to notice a change in how the pain was affecting me.
Crafting my beads and designing my jewelry require focus and concentration that distract and free my mind from the pain. Kneading the clays together into luscious colors, and rolling and forming the clay into various shapes is a calming, meditative process that grounds me. When I’m deeply immersed in the creative process, I feel a “release.” The negative emotions, demands, tensions, and stress of my everyday life fall away. My body feels relaxed. When this happens, I experience very low pain levels and sometimes I have no pain.
Tapping into my enjoyment of the creative process has allowed me to created a private space for emotional healing and stability with vulvodynia. In this private space I can connect in a positive way with my essential self, engaging my mind, my hands, and my energy. Ideas flow freely without judgment but I can have control over the outcome. I’ve become more open to the possibilities life presents and have developed new goals. Through the creative process I have a tangible way to express my thoughts and emotions in a positive manner.
Engaging with the creative process has given me other benefits. My physical health has improved. I sleep better and am more resilient in bouncing back from the fluctuating pain levels I experience. When I’m faced with adversity, I’m more resourceful and better at problem-solving. Through the creative process I’ve discovered a tangible way to express myself, to share a part of myself with the world, and to be productive and make something useful. I found purpose and meaning through making jewelry and a bonus opportunity: a new way to make a living and a life.
This essay will be published in the upcoming book, Writing as Therapy: Women’s Writing on Vulvodynia.