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Resilience and art in chronic painMary Lynch a , Gail Sloane b , Caitlin Sinclair c & Raewyn Bassett da Dalhousie University , Halifax , Nova Scotia , Canadab Nova Scotia Provincial Department of Health , Halifax , NovaScotia , Canadac Dalhousie University , Fort MacMurray, Alberta , Canadad Dalhousie University, Faculty of Health Professions , Halifax ,Nova Scotia , CanadaPublished online: 21 Jun 2012.

To cite this article: Mary Lynch , Gail Sloane , Caitlin Sinclair & Raewyn Bassett (2013) Resilienceand art in chronic pain, Arts & Health: An International Journal for Research, Policy and Practice,5:1, 51-67, DOI: 10.1080/17533015.2012.693937

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Resilience and art in chronic pain

Mary Lyncha*, Gail Sloaneb, Caitlin Sinclairc and Raewyn Bassettd

aDalhousie University, Halifax, Nova Scotia, Canada; bNova Scotia Provincial Department ofHealth, Halifax, Nova Scotia, Canada; cDalhousie University, Fort MacMurray, Alberta, Canada;dDalhousie University, Faculty of Health Professions, Halifax, Nova Scotia, Canada

(Received 18 September 2011; final version received 11 May 2012)

Background: Previous work has identified the importance of art in health and healingbut little has been published on specific responses from artistic populations. Aims: Theaim of this study was to explore the experience of a group of people living withchronic pain who were able to continue to create art in the face of pain. Our hypothesiswas that each of these participants had made a positive adaptation to the experience ofpain and that we could learn more about the process of coming to terms with pain fromthem.Methods: A qualitative approach using thematic analysis was undertaken usinga self-report questionnaire containing 16 questions. The data were analyzed using ageneral inductive approach, dominant themes were summarized and interpretiveanalysis was done. Results: Key themes that emerged addressed the impact of pain(e.g. limitation, loss, social isolation, stigmatization) along with the process needed tocome to terms with it (acceptance, adaptation) and the transformative aspects ofcreating art. Conclusions: This study confirms the depth of suffering associated withthe experience of chronic pain and the incredible resilience required of the creativemind in overcoming serious adversity in a way that fosters growth and finds newmeaning.

Keywords: chronic pain; resilience; art; thematic analysis

Introduction

Chronic pain is a growing public health problem affecting approximately 1 in 5 people in

the developing world and 2 in 5 in less well-resourced countries (Becker, Sjogren, Bech,

Olsen, & Eriksen, 2000; Blyth et al., 2001; Breivik, Collett, Ventafridda, Cohen, &

Gallacher, 2006; Huijer Abu-Saad, 2010; Moulin, Clark, Speechly, & Morley-Forster,

2002; Sjogren, Ekholm, Peuckmann, & Gronbæk, 2008; Tsang et al., 2008). This

growing epidemic is related to many factors. Modern medicine is able to extend life,

but unfortunately many of the procedures necessary to extend life can also lead to

persistent pain (damage of nerves during surgery, radiotherapy, chemotherapy, drugs to

treat HIV/AIDS); this along with the aging of the population is associated with a growing

rate of chronic pain conditions.

The experience of chronic pain is extremely noxious and associated with significant

suffering. There is a major impact on one’s ability to engage in meaningful activities with

associated effects on mood and double the risk of suicide (Tang & Crane, 2006). Studies

have identified that people with chronic pain have the worst health-related quality of life as

compared with other chronic diseases such as heart disease, chronic obstructive lung

q 2013 Taylor & Francis

*Corresponding author. Email: mary.lynch@dal.ca

Arts & Health, 2013

Vol. 5, No. 1, 51–67, http://dx.doi.org/10.1080/17533015.2012.693937

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disease or kidney failure (Choiniere et al., 2010; Schopflocher, Jovey, & Taenzer, 2011).

How is it, then, that people manage to live with chronic pain?

The clinician assisting people living with pain witnesses stories of courage,

perseverance and resilience. An example of this resilience is present in people living with

chronic pain conditions who are able to create art. One of the authors, a pain management

specialist (ML), has had the good fortune to assist a number of artists with pain and it was

this experience that inspired the current research. These artists had all managed to create

art in the context of moderate to severe physical pain and we wanted to learn from this

experience and begin to develop an understanding as to how people living with this much

pain manage to accomplish this, and how this might inform our current understanding of

the process of coming to terms with or adapting to the experience of chronic pain.

Background

A literature search identified excellent work examining art as therapy in various health

conditions including HIV/AIDS (Rao, et al., 2009), cancer (Nainis et al., 2006) and

rheumatic pain (Muller-Busch & Hoffmann, 1997). Additional research has supported the

positive impact of art on health (Graham-Pole, 2000; Graham-Pole & Lander, 2009) and

has argued convincingly that art is a determinant of health (Lander & Graham-Pole, 2008).

Dr. Graham-Pole, a pediatric oncologist, who co-founded the Arts in Medicine Program at

the University of Florida, writes that “ a regular dose of art making can . . . make you

healthier and happier. This is especially true if you are dealing with a serious illness,

disability, or any long term adversity” (Graham-Pole, 2000, p. xiv). In his book, Graham-

Pole reviews a growing literature supporting the health benefits of art whether this be

through music therapy, visual arts, creative writing or performance arts. He describes that

engaging in art-making activities or recovering in an aesthetically pleasing environment

will speed recovery from illness (Graham-Pole, 2000, p. 35).

Acceptance

There is a growing literature on the importance of acceptance with reference to the

experience of pain. Acceptance of chronic pain includes an active willingness to have

pain present, along with associated thoughts and feelings, when to do so results in overall

greater involvement in valued activities and reaching of personal goals (McCracken &

Eccleston, 2005). A growing number of studies have identified that greater acceptance of

the pain is associated with better emotional, physical and social functioning.

Researchers investigating resilience have identified that pain acceptance may play

a prominent role in resilience to pain (Sturgeon & Zautra, 2010). Initial work using

acceptance-based treatment approaches has shown promise in assisting patients with

complex, longstanding pain (McCracken & Eccleston, 2005). As it is currently described

by researchers in this field, acceptance includes: (a) seeing thoughts about pain as just

thoughts that may be adding to their suffering; (b) being present with potentially disturbing

thoughts and feelings without defense or struggling; and (c) choosing actions that move

them toward things they most value in life in spite of the pain and resulting thoughts and

feelings.

The onset of chronic pain or other chronic conditions is a profoundly life-altering

event. The Study Group on Women with Chronic Illness and Disability at the Stone

Center, Wellesley College, in Massachusetts have identified a three-stage process through

which one comes to terms with chronic illness and disability. These steps include:

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recognition, renegotiation and regeneration (Reid-Cunningham, Snyder-Grant, Stein,

Tyson, & Halen, 1999). Recognition is the conscious awareness of a serious change in

health status along with an understanding that this may profoundly change one’s life.

Renegotiation is the process of integrating the experience of illness into one’s identity; in

other words, “Who am I now?” The integrative process involves new learning in all

relationships and experience. Regeneration is the process of creating or finding meaning

and connection in one’s life subsequent to the onset of the chronic condition.

This three-step progression is a useful way to consider the process that one might go

through in coming to terms with such a life-altering event as chronic pain, but how does one

begin to make these steps and what aspects might assist the person with pain in moving

forward?

Resilience

Resilience in psychology refers to the ability of individuals to cope with and rise above

adversity or stress. The theme of resilience has been a significant focus in the field of

child developmental psychology in attempting to understand how many children are

able to sustain positive functioning in the face of traumatic circumstances (Luthar,

Cicchetti, & Becker, 2000). Recently, resilience has become a focus in understanding

an approach to a positive adaptation to the experience of chronic pain (Sturgeon &

Zautra, 2010). Three primary classes of outcomes have been identified: recovery,

sustainability and growth. Recovery is described as the extent to which the person

regains equilibrium following upsetting events. Sustainability is the perseverance of

desirable actions, goal pursuits and social engagements that are sources of positive

emotion and self-esteem. Growth is the development of greater understanding of one’s

capacities and new learning that arise as a consequence of the stressful experience and

one’s coping efforts.

Previous authors have also identified the importance of resilience and meaning in

development of a sense of well-being emphasizing the importance of the belief that one’s

life has meaning and purpose (Lightsey, 2006; Smith & Zautra, 2004). There is support for

the importance of this concept in the experience of pain with faster recovery times from

knee replacement surgery in individuals who scored higher on the “Purpose in Life Scale”

(Smith & Zautra, 2004).

Scholars in resilience have also described “positive characteristics” that can be

considered resilience resources in people living with chronic pain, including optimism,

purpose in life and pain acceptance (Smith & Zautra, 2008). Dispositional optimism

involves a tendency to consistently hold positive expectations for the future and may be

involved in overcoming adversity related to issues such as chronic pain. Higher levels of

optimism are associated with higher levels of life satisfaction in older adults with

osteoarthritis (Ferreira & Sherman, 2007) and lower levels of pain intensity and symptoms

of depression in rheumatoid arthritis (Treharne, Kitas, Lyons, & Booth, 2005).

Self and Identity

These and other investigators have also written about the importance of considering

concepts of self and identity in relation to pain (Morley&Eccleston, 2004; Smith&Osborn,

2007). Morley and Eccleston have argued that one of the key objects of fear in chronic pain

was the threat to identity and the potential of pain to overwhelm the self permanently and

threaten one’s social legitimacy. Reid-Cunningham et al. (1999) write about the profound

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alteration in one’s life that comes with chronic illness, including chronic pain conditions,

and the importance of integrating this experience into one’s identity, describing this as an

integrative process that involves new learning in all relationships and experience. Smith and

Osborn identified the debilitating impact of chronic pain on the sense of self in a qualitative

study using interpretive phenomenological analysis of the psychological impact of chronic

low back pain (Smith & Osborn, 2007). In their sample, participants’ self-concept had

deteriorated and continued to endure further assaults; they struggled with an unwelcome

“self with pain” incompatible with the preferred “real me”. This new “self with pain” was

perceived to be socially undesirable, shameful and was most difficult to bear in social or

relational contexts.

In summary, there is a growing literature supporting the positive impact of art in health

and healing, but little has been published on specific responses from artistic populations

or on the interaction between the experience of chronic physical pain and the creation of

art. In addition, previous investigators have made progress toward developing an

understanding of the process through which individuals successfully come to terms with

living with chronic pain, although many questions remain. Our initial thoughts were that

people living with chronic moderate to severe pain and who were able to continue to create

art had made a positive adaptation to the experience of pain and that we could learn more

about the process of coming to terms with pain from them. We did not want to impose any

particular theoretical framework onto their experience. Our goal was to be as open as

possible to their voice and experience and it was for this reason that a qualitative approach

was undertaken in order to begin to explore this area.

Methods

Participants

Participants were recruited through the Pain Management Unit, a tertiary care pain clinic

at the Queen Elizabeth II Health Sciences Centre in Halifax, Nova Scotia, Canada. There

were two inclusion criteria: that participants must have a chronic pain condition and be

active in creating art. The definition of artist for the purposes of this study was very broad

and included visual arts (painting, drawing, sculpting, mixed media), writing prose or

poetry, folk arts such as primitive rug hooking or working with colors and textures in the

ground as in gardening. We did not include performance artists in this initial study.

Questionnaire

An exploratory self-report written questionnaire was designed. This questionnaire

contained 16 questions. Questions explored demographic information (duration of pain,

age, gender, diagnosis of pain), pain severity (numeric rating scale 0–10, where 0 ¼ no

pain, 10 ¼ worst pain) and the type of art created. Subsequent questions inquired about the

interaction between the art and the pain. For example, “Has pain interfered with your ability

to do your art (please explain)?”, “Has creating art helped you with your pain management

(please explain)?”, “If you have not been able to continue creating your art, what is it that

stops you?” The three final questions asked participants to communicate how theywere able

to continue creating art while living with pain, suggestions for others living with pain or

other adversity or any additional comments.1

Procedure

This study was approved by the ethics review committee at the Queen Elizabeth II Health

Sciences Centre. Participants were provided with a copy of the consent form and the

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questionnaire. Consented participants were asked to complete the questionnaire at their

convenience andmail it back to the primary investigator (ML) at the PainManagementUnit.

Data Analysis

Demographics, age, sex and diagnostic information were put into table format. Pain

severity according to the numeric rating scale was tabulated and means and ranges

determined. Qualitative data were analyzed using a general inductive approach (Bryman

& Burgess, 1994; Thomas, 2006). The primary purpose of this approach is to identify

significant or dominant themes present in the raw data and to condense the raw text into

a summary format. During the initial stages of analysis, questionnaires were read

independently by three of the authors. The written narrative responses were entered into

a table format and patterns in the data were notated in the table margins. This helped

organize the participant’s narrative accounts and begin interpretive analysis. The data were

examined for commonly occurring words, phrases and concepts. A code was developed

for each of the commonly occurring phrases, words or concepts and these were sorted until

distinct and comprehensive themes were generated (Boyatzis, 1998). Codes and themes

were discussed and agreed upon in team meetings.

Establishing Trustworthiness of Analysis

Whether the claims, implications and conclusions of the research can justifiably be made is

referred to as trustworthiness in qualitative research. Trustworthiness was evaluated using

the following four criteria: confirmability (how the data were interpreted without undue

researcher influence), dependability (how the integrity of data was kept over time),

credibility (ensuring the research team has the expertise to interpret the data), and

transferability (applying conclusions to other similar situations) (Ulin, Robinson, &

Tolley, 2005).

Confirmability. To ensure no team member’s biases influenced the data interpretation

process, participants’ responses were read and coded independently by three of the

investigators (ML, GS, CS) prior to team meetings to discuss, debate, and agree upon

codes which interpreted and explained the data. The fourth member of the team (RB)

independently read and coded the data and confirmed the analysis upon completion.

Dependability. To ensure data were not compromised, data were collected over several

months. All participants responded to the same set of questions, and the research process

was carefully documented.

Credibility. The research team includes ML, a pain management specialist who has over

25 years of experience assisting people with pain including artists with pain, GS an

experienced nurse with additional background in bioethics and health care administration

and CS a graduate student in with an interest in healthcare. RB is a recognized expert in

qualitative research.

Transferability. Study findings are contextually rich, and conclusions supported by the

data, facilitating their transfer to similar situations.

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Findings

Seventeen questionnaires were distributed and 15 were returned completed. There were 13

women and 2 men and the mean age was 57 years (range 38–79). All participants had been

living with pain for years with a mean duration of 14.3 years (range 2–30 years). The

mean severity of pain was 5.56 on the 0–10 point rating scale, with a mean range of

3.7–8.7, indicating that the pain was generally moderate to severe in intensity. Table 1

presents the diagnoses of pain along with further detail. Table 2 presents the artist’s

description of their art. The qualitative data are presented below.

Key Themes

Overview

Themes ranged from the physical and psychological aspects of pain and its limitations to

the approaches to making adaptations to the pain as well as psychological and spiritual

transformation and growth. Several participants wrote of using art as distraction and

Table 1. Pain characteristics

Participantnumber

Duration ofpain Diagnosis

Pain severitymost days(range)

Art beforepain?

Paininterferewith art

001 30 years Failed back OAArachnoiditis

4 (2–10) Yes Yes

002 7 years NP OA 4.5 (2–7) Yes professional Yes003 7 years disc herniation spinal

stenosis severe OA knee6.5 (4–9) Yes Yes

004 5.5 years PHN OA Fibro, TMJ 6.5 (5–10) Yes not as muchas I do now

Yes

005 17 years Post-traumatic neckand shoulder pain OA

5 (4–8) Not as much asI do now

Yes

006 8 years NP post-surgical 2 (1–5) Not as much asI do now

No

007 28 years SLE DDD Low backpain

4.5 (3–9) Yes not as muchas I do now

Yes

008 13 years NP spinal cord tumor 5.5 (3–10) Yes not as muchas I do now

Yes somewhat

009 20 years Thromboembolic disorderand ischemic pelvic andleg pain

4 (–8) No somewhat

010 7 years Diffuse idiopathic skeletalhyperostosis Spinalstenosis

7.5 (3–9) Yes Yes

011 .2 years Fibromyalgia OA 6 (5–8) Yes Yes012 3 years Fibromyalgia Interstitial

cystitis6 (4–9) not as much as

I do nowYes

013 10 years Soft tissue strainFibromyalgia

5 (5–9) Yes Yes

014 50 years Fibromyalgia Spinaland sciatic problems

7.5 (6–9.5) Yes Yes

015 7.5 years Low back pain causedby injury

9 6.5v10 Yes Yes somewhat

OA, osteoarthritis; DDD, degenerative disc disease; NP, neuropathic pain; SLE, systemic lupus erythematosis

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escape from pain while others described how the experience of pain informed and

expanded their art.

Limitation and Loss

The artists wrote about the noxious aspect of living with pain on a daily basis and the

physical and cognitive limitations imposed by pain. They described the associated feelings

of fatigue and exhaustion brought on by the ongoing presence of the pain as described in

the following quote: “I am operating on about one-third of the old energy, tire easily, need

rests . . . ”. Many described that when the pain was most severe it prevented them from

engaging in creating art: “the bad days of course my focus is not there, the pain overrides

my creative side”. This included physical limitations in the making of the art as well as

interference with the ability to develop the frame of mind needed to create art. “Physically

I have trouble staying in one position, holding up arms much, [ . . . ] mentally I don’t have

ambition or vision, get very frustrated . . . ”. The following quote summarizes how these

limitations interact: “my ability to focus and concentrate is decreased, back spasms

increase while working, the creative process is compromised and then it is difficult to get

back to the physical stage that allows me to work”.

Loss was significant to the artists. Losses were described as involving many areas

including loss of function, concentration, confidence, sleep, mood, joy, hope and identity.

Most reported loss of ability to work in wage earning and other roles along with great grief

related to these losses as demonstrated in the following two quotes: “I feel great grief over

losing an international career”; “Living with pain has interfered with many important roles

I have had in my life, leaving huge voids (loneliness, isolation, sadness, depression)”.

Economic loss was universal and created significant hardship. Many described loss of

relationship and ability to participate in social activities.

Solitude

Many wrote of the loneliness and the social isolation caused by pain. This was related to a

combination of the physical limitations on movement and energy caused by pain with

resultant diminished social contact as well the impact on the artist’s view of themselves

within social situations. There was a sense that participants were struggling to overcome a

feeling that they had little to offer to others in relationship. Artists also noted the potential

Table 2. Kind of art.

001 Watercolor, acrylic oil with water-based painting002 Drawing, clay, paintings003 Watercolor, wood carving004 Painting, drawing005 Gardening with flowers006 Watercolor and drawing007 Watercolor, oil, rug hooking, papier mache/clay008 Fiber artist, drawing, rug hooking009 Author/writer010 Wildlife nature photographer and writer011 Collage012 Acrylic on canvas and rocks Watercolor/pencil art013 Oil and watercolor paintings and many crafts014 Paint (watercolor and oils acrylics), sculpture Illustrations, architectural drawings015 Paint portraits and landscapes, oil and watercolor, sketches with pencil

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for negative judgments by others along with stigmatization and wrote of how creating art

assisted in overcoming this. “Art helps with the loneliness of pain. There is tremendous

social isolation due to chronic pain. Without the imposed solitude and social isolation of

pain, I doubt I would have embraced my art with such passion . . . ”. The outcome

described by participants of the solitude imposed by the effects of pain included passion,

changed outlook and heightened creativity. “There are so many social stigmas and barriers

associated with chronic pain . . . Its hard not to lose hope and courage, but creative

endeavors (art, music, writing) can change your outlook and make you feel less isolated”.

Modifying and Adapting

Several artists described the need for adaptations in order to create. This often involved

a physical change of some sort, as one artist comments, “with help I have been able to adapt

the entire hooking process, for examplemy hooking frame has been built especially forme.”

For others, it was modifying howmuch time they spent to accommodate aching bodies. The

following participant exemplifies this. “My fingers and wrist get very sore and sometimes it

is hard to paint for as long as Iwant to. Imust constantlymodifymy sessions, get up andwalk

or just stretch”. Others modified the process involved in their art, for example “there are

many different aspects to being a fiber artist . . . according to my pain level there is always

some aspect of the process that I can do, for example if I am unable to hook I will spend time

dying wool, planning a mat, sketching the next mat”, or the type of work undertaken was

modified: “I have adapted to trying smaller non-complex work, new objects, new media, I

see some progress over the past 3–4 years and will continue, when and as I can, but I don’t

hope for exhibition qualitywork, at least not yet. I have to keep scaling down expectations in

art.” As can be noted in the last quote, adaptation and modification also might include one’s

expectations. Artists might also need to switch to a completely different medium: “I could

not physically make art the way I used to so I had to learn a completely new technique, the

concentrated stillness and focus in positioning required to make art is often difficult to

maintain and can cause increased pain. It is a delicate balance to use art for painmanagement

while ensuring art doesn’t cause more pain”. In this case, the artist had changed from

painting oils on canvas in a standing position to painting on silk in a seated position, and this

also involved using lighter tools and materials.

Distraction

The presence of the excruciating levels of pain and the need to find a way to move away

from this noxious experience was a major theme. Several artists spoke of art as a form of

distraction from the pain; for example, one artist writes “on the suggestion of my

physiotherapist I began drawing and painting as a distraction from pain”; another described,

“It providesme an opportunity to redirect my focus or perhaps a distraction. It feels somuch

better to pick up my work and hook through the night when I can’t sleep and have to move

around”. As with this last quote several artists also wrote of how the art not only distracted

from the pain but led into amore positive state of mind, “art brings joy which is a distraction

from pain”, and “Early on I decided that pain would not limitmy activities. Gardening gives

me lots of pleasure. I didn’t want to miss out on it. By trying to focus on positive thoughts

I was able to put the pain out of my mind and focus on the gardening”.

Transformation

One artist wrote of how the experience of pain could change or inform her art “I try to

allow my pain to reflect on my work, like my dark periods, it seems like I am not up to par

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and am in a lot of pain, my work can sometimes become dark. But when I have my blocks2

in the beginning my art appears to me to be more colorful, and a total different kind of art.”

A second artist described that she deliberately uses the experience of pain to enhance the

art. This required a creative cognitive and spiritual process described by the artist as

follows, “Physical limitations pose constant, ever-changing and frustrating challenges.

Rather than interfering with the creative process pain can enhance and intensify it. Some

of my best art has been created during my worst pain. I try to harness the energy of the pain

and then turn it into soothing colors and lines. This pulls my brain away from the pain into

the art. I’m trying to connect with positive energy . . . it is all about a change in focus.

When I am tingling with fiery, electric, unremitting pain, I try to express it while

connecting with the Divine where all creative energy springs from. This is soothing”. This

aspect of transforming the noxious experience of pain into something positive is affirmed

by another artist who writes, “With a bit of creativity and hardship usually something

beautiful is born out of it, anyway everything is art to some degree. I would suggest even in

the gray times to still create even when you don’t feel like it because sometimes that is

what you really need to be doing at that time in your life”. Figures 1 and 2 are silk paintings

that portray this theme of transformation.

Being fulfilled

Several artists described that creating art while in pain can lead to a sense of fulfillment,

accomplishment or enhancement. As one participant described, “Creating art can also be

very helpful in several indirect ways. For example, living with pain has interfered with

many important roles I have had in my life, leaving huge voids (loneliness, isolation,

sadness, depression). Hooking primitive mats and dying, beautiful richly colored wool

Figure 1. Painting Away Pain.

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brings me joy, helps me to feel fulfilled”. This same artist identified that art has not

replaced her loss of a career, but “in a big way has enhanced my life since my career”.

Art as a Route to Connection with Others

Several artists described how creating art allows one to reach out to others, whether this be

through developing more of an appreciation of what one has to offer or development of

a capacity for sharing joy and helping others. Art can allow one to overcome the sense of

isolation and join with others; as one artist describes, art allows her, “A different focus,

positive reinforcement, part of a group where my pain doesn’t matter or isn’t visible”.

Artists wrote of using art to overcome a sense of having lost the capacity to offer anything

in the context of relationship, as exemplified by the following comment: “art helps me to

put the pain at the back of my mind, it also makes you feel like you have accomplished

something very special and personal. You have given of yourself”. Further, art was

described as a route to not only connecting with others but also a way to help others:

“I have always known the importance of helping others, living with pain has made it

difficult for me to find ways of helping others, this has been one of the reasons I have

expanded my work with mats to include teaching others to hook mats”.

Acceptance and Taking Control

Artists wrote of taking control, with the implication that the pain had taken control. One

artist noted, “Chronic pain is hateful, so I look at pain as the enemy and I DONOT befriend

it – I will always try ways and means to take back the time in pleasure that pain so often

steals away from me then I feel victorious, I am able to take back some control of the pain

Figure 2. Leaf Angels.

60 M. Lynch et al.

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and that makes me very thankful.” Another artist wrote of the role of acceptance in this

process: “You need to accept your condition enough to move on, not to the point where you

give up and give in. “I am creating my own experiences, I am responsible for my own

happiness, joys and what it is I value, it is important for me to identify my passions, these

gifts that bring me joy and find ways to pursue them even while living with pain”.

Self-worth/Identity

Many artists described how living with pain eroded their sense of self-worth and identity

and how they used art-making as a way to move from feeling useless to developing a sense

of self-worth and a new appreciation of their identity. One artist described, “I love to paint

and create because it makes me feel of value, because when you live with pain you can feel

useless and devalued, you feel a burden and not a part of society so painting means a lot to

me.” Artists described not only the sense of uselessness or of not contributing but also the

sense of guilt that resulted: “I started to create more because after I could no longer work in

the hospital I felt I had no purpose and I was a lazy person with lots of guilt because I did

not feel I had a title”, and how art assisted in moving them through this: “now with a lot of

therapy and soul searching I now know we are here to create and have a legacy, I believe

art is a lot like meditation and to create is to be alive”. Artists wrote of using art to find the

self again “be determined to take back the part of you that you valued in your life, in spite

of the pain”, as well as the sense of worth in self, “remember that your self-worth is much

more important than anything else in your life”. Artists also described a sense of

annihilation of the self and life and a process of finding a new identity and a new life. One

artist writes, “I slowly give up the old me . . . and create a new acceptance and

appreciation of my self and life”. Another artist portrayed an interaction between themes

identity and taking control in a series of paintings titled “Lost”, “Losing control” and

“Under control” (Figures 3–5). In this series of figures one can appreciate the loss of any

boundary to the self in “Lost”; in this case the pain has annihilated any sense of an

integrated body/self, while with increased control one observes clearer integrity of

boundaries around the bodily representation of the self.

Growth

Artists wrote of the process of growth through the experience of pain and adversity this

included developing a new appreciation of the world, one’s passions or finding beauty and

truth. One artist wrote, “I have to keep scaling down expectations in art. On the other hand,

I never appreciated fine art and nature so much”. Others described: “I did not know what

my passion was until I had to find it after becoming ill”, and “with a bit of creativity and

hardship usually something beautiful is born out of it”, “A pain episode followed by years

of chronic pain has been the portal to truth for me”.

Meaning

Along similar lines of making something good out of adverse experience, several artists

described the process of finding meaning or joy, of “getting to a soul soothing place”. In

many responses there was also the juxtaposition of loss, frustration, dark periods and the

process the artist goes through in an effort to get beyond the pain.

One participant described how “art brings joy, which is a distraction from pain. Art is

cheering, it sooths the soul and allows for a form of expression, without art life would have

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so much less meaning . . . without art I believe I would be suicidal at times, sometimes

pain is overwhelming and the future feels daunting”. Another describes, “In some ways it

is like meditation while you are in the process, it is always the greatest experience also

when you have created the piece and you can say I created this and yes I do have a purpose.

Maybe someone else might get some good feelings about this piece also”, and, “for me

working with my hands is important work . . . perhaps an answer to a piece of the

important question . . . what is my purpose”. And finally, “Purpose is passion in action . . .

no matter what adversity you face in life, if you don’t find purpose and meaning, the will to

overcome pain or any adversity is severely limited if not removed”.

Discussion

The Reality and Impact of Chronic Pain

One of the first observations that should be made is that this study supports that the lived

experience of chronic pain causes tremendous suffering and exacts a very high price on

Figure 3. Lost Painting.

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the person who is living with it. These comments may seem obvious but bear mentioning

given that society continues to deny pain and minimize the impact of chronic pain (Teasell,

1997). These attitudes persist in spite of growing evidence supporting a significant adverse

effect of pain on an individual’s ability to function and on quality of life. Chronic pain is

also associated with depression and increased rates of suicidal ideation (Choiniere et al.,

2010; Schopflocher et al., 2011; Statistics Canada, 2010). The narratives shared by the

artists in this study have demonstrated the depth of suffering and loss experienced by a

gifted group of people living with pain.

Art, Adaptation and New Appreciation

Reid-Cunningham et al. (1999) identified a three-stage process of coming to terms with

chronic illness and disability. This process of recognition, renegotiation and regeneration

is apparent among the artists with chronic pain in this study. While some participants

Figure 4. Losing Control.

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saw pain as “stealing” time, as “hateful” and as “the enemy”, these metaphoric ways of

thinking about pain did not prevent them from the creative art process or from moving

forward in their lives (McCracken & Eccleston, 2005). Recognizing (Reid-Cunningham

et al., 1999) and accepting (McCracken & Eccleston, 2005) the physical and creative

limitations and losses from chronic pain in their lives and work, participants set about

modifying how they interacted with their medium. They adapted tools and processes so as

to continue creating, sometimes shortening the length of time they worked at their art, or

changing from their usual physical position, for example from standing to sitting, or

learning a different technique, as well as modifying their expectations of what they could

achieve. Art was used by participants as distraction from pain, and for some participants,

pain was simultaneously a creative force that influenced their art. Recognition and

acceptance enabled a renegotiation of self and identity as chronic pain was integrated into

their lives and a sense of control returned. Optimism was a defining characteristic of many

study participants and was a resource upon which they drew (Smith & Zautra, 2008). The

Figure 5. Under Control.

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fulfillment that some participants found in art while in pain encouraged reflection on the

loss of past roles and careers, on the ensuing experience of isolation and depression, and

yet at the same time, participants experienced an enrichment to their lives from the new or

renewed focus on art (Graham-Pole, 2000). A new appreciation, passion, joy and beauty

born from painful creativity are part of the process of regenerating their lives with purpose

and meaning (Reid-Cunningham et al., 1999) resulting in a positive adaptation to the

experience of pain (Luthari et al, 2000; Sturgeon & Zautra, 2010).

The writings of Viktor Frankl are helpful regarding the issue of finding meaning under

conditions of adversity. Viktor Frankl was a German psychologist who survived three

years in a German concentration camp where he lost his entire family except for one sister.

Frankl writes that, “striving to find meaning in one’s life is the primary motivational

force in man” (p. 154). Frankl considers, “man is a being whose main concern consists in

fulfilling meaning and in actualizing values rather than the mere gratification and

satisfaction of drives and instincts” (p. 164). After three years in a concentration camp

Frankl writes, “there is nothing in the world . . . that would so effectively help one to

survive even the worst conditions as the knowledge that there is meaning in one’s life”. He

quotes the philosopher Neitzsche: “He who has a why to live can bear almost any how”.

Frankl continues, “man’s main concern is not to pursue pleasure or avoid pain but rather to

see a meaning in his life” (p. 179). Frankl’s observations ring true as we reflect on the

wisdom shared by the artists in this study, many of whom have made direct reference to

finding purpose, fulfillment and meaning through art-making, all of which takes place in

the context of adversity of living every day with chronic pain.

Limitations

This was an initial exploratory study in a small number of participants, most of whom

had experienced the pain for years giving the artists time to recognize, acknowledge and

accept that the pain was incurable and now a chronic condition. The majority of this

sample had access to appropriate pain care, affirming the diagnosis and assisting with the

management of the pain. This is not the case for the majority of people living with pain.

It is important to keep these factors in mind when attempting to generalize to all patients

suffering with chronic pain. Also it is probable that there are other themes and additional

interpretations and analyses contained within this data that we have missed and it is for

this reason the authors have included numerous quotes so that the reader may draw their

own conclusions.

Summary

Through this work we have had the privilege of getting to know a little bit about the inner

lives of an incredibly resilient group of individuals who are able to create art while living

with serious pain conditions. This study confirms the depth of suffering, the losses, the

social isolation, and stigmatization, as well as the impact on one’s identity caused by

chronic pain. We have observed the profound struggle that the experience of chronic pain

can have on the people living with it, including questioning the very meaning of life and

whether it is worth living. Through the words of these artists living with pain we have had

the opportunity to witness how the creative mind is able to overcome serious adversity in

a way that fosters growth and finds new meaning allowing one to carry on and make the

world more beautiful even in the face of unremitting pain. The artists who took part in this

study are an inspiration to us all.

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Acknowledgements

Painting Away Pain and Leaf Angels are silk paintings by Anne Camozzi Lost, Losing Control andUnder Control are watercolor paintings by Helen Tupper.

Conflict of interest

There is no conflict of interest for any of the authors of this paper.

Notes

1. The full version is available from the corresponding author.2. The artist is referring to “blocks” or nerve blocks, a pain-relieving procedure that provided benefit

in this case.

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