Caitlin Norris

Abstract

The expression of symptomatic pain that comes along with invisible chronic illness can be crucial for an overall feeling of agency. The present study aimed to widely explore chronic disease/illness. The researcher conducted an extensive review of available literature and engaged in a self-study. Areas of research included facts and statistics, lifestyle adaptations, the impact of chronic pain as a common side effect of chronic disease, and treatment options with an emphasis on Art Therapy and textiles. The researcher, diagnosed with chronic illnesses and pain, engaged in a fiber art experience over a two-month period to explore the impact of using knitting to chronicle pain. The results of this experience were extremely positive. The researcher experienced catharsis, mood elevation, diversion from pain, and newfound understanding of their chronic pain.

Introduction

Individuals newly diagnosed with chronic disease or pain are met with an overwhelming amount of possible lifestyle shifts. This study was undertaken to explore the scope of chronic disease and subsequent available lifestyle adaptations to ease suffering. A common issue among chronically ill persons is conveying the struggle or pain that can come with chronic disease. Communication was a common thread throughout all research, including therapy, online community, managing relationships, and more. The project included within this study aims to help those suffering with chronic pain to communicate their pain in a new way, in hopes to help them better understand their illness.

This study details how chronic pain can permeate every aspect of a person’s life. Research highlights the shifts that come with a new diagnosis of chronic disease, and the importance of communicating the fears and/or pain that come with a new diagnosis. A vital aspect of navigating illness is coming up with a treatment plan. This study explores the vast variety of supports, treatments, pain management, and therapy that is common among treatment plans. With a focus on art therapy, research gravitated towards the subject of textiles as therapy.

Utilizing the above research, the researcher conceptualized the Chronic Pain Scarf. The Chronic Pain Scarf aims to explore how we communicate pain and makes invisible pain visible in a wearable textile object. The Chronic Pain Scarf creates a narrative for treatment, allows for empathy, and the objectification of one’s suffering. It makes pain viewable, literal, as opposed to a concept. Through this project, the researcher was able to explore their relationship with chronic pain, chronicle progress of treatment, as well as explore the calming benefits of textile making. It created a narrative in which to better understand or to better anticipate dealing with the side effects of a lifelong chronic illness.

Literature Review

The researcher explored chronic disease/illness through definition, statistics, as well as defining chronic pain, which is commonly comorbid with chronic disease/illness. Next, the researcher examined what a life with chronic illness and pain entails. This included consequences of chronic pain, pain scales and reporting, adjustments and fears, social constraints, as well as the importance of mental health when dealing with lifelong illness. For those with chronic illness/pain, navigating treatment can be exceptionally difficult and overwhelming. Research detailed treatment options, pain management, and mental health treatments with a focus on Art Therapy and textiles.

Chronic Disease/Illness

From a broad medical standpoint, chronic diseases are non-communicable ailments (diseases that are not able to be transferred from one person to another) of long duration that are rarely curable. These diseases may cause need for medication, pain, periods of incapacitation or disability, functional limitations, and may require continual management of symptoms and/or, “adherence to complex treatment regimens” (Revenson & Hoyt, 2016, p. 285). Chronic disease is defined on the basis of biomedical disease classification, whereas the term “chronic illness” refers to the illness experience of one living with chronic disease. The term “chronic illness” is not necessarily recognized within healthcare systems, as it does not fit into biomedical or administrative classification (Martin, 2007). While it is important to recognize the pathology of chronic diseases, it is also necessary to distinguish and understand the illness experience of an individual when regarding long term care.

Life with Chronic Pain

Those who suffer from chronic pain are at risk for developing “altered mental states and physical dysfunctions”. Studies have found that people who suffer from chronic pain are more likely to develop psychological disorders than those without chronic pain. Some of these altered mental states or psychological disorders may include: major depressive disorder, suicidal ideation, and suicide attempts. “Prevalence of psychopathological disorders ranges from 33% to 46% among individuals with chronic pain conditions, while the incidence of psychological disorders is much lower in populations not experiencing pain (10%) or with shorter durations of pain” (Fine, 2011). The uncertainty of illness-related life outcomes can lead to “increased depression, anxiety, alienation, abandonment, withdrawal from intimate or previously satisfying relationships, and emotional ambivalence as potential reactions” (Lapham & Ehrhart as cited in Sidell, 1997). Those dealing with chronic illness have much to navigate and emotionally process, but this all presents one larger specific challenge, and that is to unite living with illness into one’s lifestyle (Hymovich & Hagopian as cited in Sidell, 1997).

Pain Scales/Reporting

It is important that those with chronic pain are able to communicate their pain levels as accurately as possible. Currently there are three universally used pain scales, though they are unidimensional, meaning they are overly simplified in terms of "total pain." These three pain scales are the Numerical Rating Scale (NRS), Verbal Rating Scale (VRS), or Visual Analogue Scale (VAS) which are used to specifically access pain intensity (PI). Multiple studies have found that the NRS scale is most efficient, “on the basis of higher compliance rates, better responsiveness and ease of use, and good applicability." Additional research has suggested that multidimensional assessment is necessary, with recommendations to include: "intensity, temporal pattern, and treatment-related factors (exacerbation/pain relief)" (Hjermstad et al., 2011).

Treatment

A foundation to any care plan is to have a plan of treatment. There are a great number of treatment options and routes of medicine to explore when encountering chronic illness. The most commonly explored option in the United States is that of Western medicine. Western medicine is defined as, “A system in which medical doctors and other healthcare professionals (such as nurses, pharmacists, and therapists) treat symptoms and diseases using drugs, radiation, or surgery. Also called allopathic medicine, biomedicine, conventional medicine, mainstream medicine, and orthodox medicine” (NCI Dictionary of Cancer Terms, n.d.). Western medicine is based upon controlled scientific studies, and as such is also often called evidence-based medicine (Western Medicine | Caring Ambassadors, n.d.). Despite its name, Western medicine is practiced around the world.

While Western medicine has dominated the healthcare industry, there are many additional alternative treatments options and branches of medicine/mental health. Due to lack of research by comparison to that of Western medicine, these alternative treatments are often met with skepticism. Regardless of the branch of medicine pursued, inclusion of the chronically ill patient within the conception of their treatment plan is likely to influence the responsibility and ultimate success of the plan (Lubkin & Larsen, 2006).

Of the many available psychotherapeutic systems, three are most used in the treatment of chronic illness: brief psychodynamic therapy, CBT, and hypnotherapy (Sperry, 2006, p.19). Brief psychodynamic therapy is typically scheduled (for an individual) once a week for 2-3 months. The goal of psychodynamic therapy with chronic illness is to explore and potentially identify unconscious factors that may be linked to feelings or symptoms. Once this information is brought into consciousness, the next step is to explore, gain insight, and control over these factors. The therapist would then provide strategies for coping with new feelings and situations. Cognitive Therapy and Cognitive-Behavioral therapy is commonly conducted with an individual or group format. The core strategy with this type of therapy is to change maladaptive behaviors or thinking and instead, reframe these thoughts. Reframing of thoughts would enable those chronically ill patients to “gradually react more positively to stressors, which translates to [potential for] reduced symptoms” (Sperry, 2006, p.20).

Art Therapy

Self-expression is vital when a person of any age is in a time of difficulty. Art therapy is an excellent option during this time, as when it is facilitated by a professional art therapist it can,

“effectively support[s] personal and relational treatment goals as well as community concerns. Art therapy is used to improve cognitive and sensorimotor functions, foster self-esteem and self-awareness, cultivate emotional resilience, promote insight, enhance social skills, reduce and resolve conflicts and distress, and advance societal and ecological change.” (About Art Therapy, n.d.)

A common misconception about art therapy is that fine art skills are required. Such is not the case, and art therapy is an option to any person of any artistic skill level willing to participate in its beneficial practices.

Art Therapy is an extremely valuable resource for those suffering from chronic illness and/or chronic pain. This is especially true of those who find it difficult to put their feelings into words such as those newly diagnosed or generally less verbal, such as children. “Art-based approaches offer many advantages and benefits in terms of bringing these internal, often non-verbal, experiences into the concrete world” (Palmer & Shepard, 2008, p.9). A common aim for Art Therapy with chronic illness/pain is reduction or diversion from current pain or pain experience, resilience, coping aids, and an overall increase in quality of life (O’Neill & Moss, 2015, p. 158).

Textiles

Textile art has become a common form of art as therapy, especially to women suffering from chronic illness. The medium of textiles represents a number of artistic practices such as spinning, knitting, crocheting, quilting, and sewing just to name a few (Collier, 2011, p.105). Collier (2011, p.105) reported that many women used their textile handcrafts for psychological reasons. Women who practiced textile arts specifically in order to change their moods stated they had more positive moods as a result of their art, such as “success, rejuvenation, and engagement”. Craft circles offered women with chronic illness the opportunity to socialize and relate over skill and ability as opposed to their ailments or disability (Reynolds & Prior, 2003, p.786).

In a qualitative study by Reynolds (Reynolds, 2000) women with chronic illness reported on the roles that needle crafts (sewing, quilting) represent in their lives. Needle crafts granted these women the ability to "preserve or regain positive sense of self," as well as see themselves as self-sufficient, capable or "able," an extremely common concern with identity within the chronic illness community. Textile artwork helped these women to maintain confidence in the face of discomfort, exhaustion, and mobility restriction. This boost in confidence and positive identity was especially valuable to women who had been forced into dependent roles in their households post-diagnosis (Reynolds, 2000).

Conclusion

Through this project, the researcher was able to track progress of their health, as well as conceptualize means to communicate pain. In doing so, the researcher gained a greater understanding of how their daily pain functions. The researcher was able to look more broadly at the patterns of their chronic pain and in turn better understand their illness. The Chronic Pain Scarf could be an invaluable tool to gain understanding of trends in pain, not only for those suffering with chronic pain, but could also benefit those close to them. The researcher anticipates that this study serves as a guide to familiarize chronic disease/pain.