Resilience and art in chronic pain

Abstract

Background: Previous work has identified the importance of art in health and healing but little has been published on specific responses from artistic populations. Aims: The aim of this study was to explore the experience of a group of people living with chronic pain who were able to continue to create art in the face of pain. Our hypothesis was that each of these participants 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. Methods: A qualitative approach using thematic analysis was undertaken using a self-report questionnaire containing 16 questions. The data were analyzed using a general inductive approach, dominant themes were summarized and interpretive analysis was done. Results: Key themes that emerged addressed the impact of pain (e.g. limitation, loss, social isolation, stigmatization) along with the process needed to come to terms with it (acceptance, adaptation) and the transformative aspects of creating art. Conclusions: This study confirms the depth of suffering associated with the experience of chronic pain and the incredible resilience required of the creative mind in overcoming serious adversity in a way that fosters growth and finds new meaning.

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Resilience and art in chronic pain
Mary Lynch
a
, Gail Sloane
b
, Caitlin Sinclair
c
& Raewyn Bassett
d
a
Dalhousie University , Halifax , Nova Scotia , Canada
b
Nova Scotia Provincial Department of Health , Halifax , Nova
Scotia , Canada
c
Dalhousie University , Fort MacMurray, Alberta , Canada
d
Dalhousie University, Faculty of Health Professions , Halifax ,
Nova Scotia , Canada
Published online: 21 Jun 2012.
To cite this article: Mary Lynch , Gail Sloane , Caitlin Sinclair & Raewyn Bassett (2013) Resilience
and art in chronic pain, Arts & Health: An International Journal for Research, Policy and Practice,
5:1, 51-67, DOI: 10.1080/17533015.2012.693937
To link to this article: http://dx.doi.org/10.1080/17533015.2012.693937
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Resilience and art in chronic pain
Mary Lynch
a
*, Gail Sloane
b
, Caitlin Sinclair
c
and Raewyn Bassett
d
a
Dalhousie University, Halifax, Nova Scotia, Canada;
b
Nova Scotia Provincial Department of
Health, Halifax, Nova Scotia, Canada;
c
Dalhousie University, Fort MacMurray, Alberta, Canada;
d
Dalhousie 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 healing
but little has been published on specific responses f rom artistic populations. Aims: The
aim of this study w as to explore the experience of a group of people living with
chronic pain who were able to continue to create art in the face of pain. Our hypo thesis
was that each of these participants had made a positive adaptation to the experience of
pain and that we could learn more about the process of coming to te rms with pain from
them. Methods: A qualitative approach using thematic ana lysis was undertaken using
a s elf-report questionnaire containing 16 questions. The data were analyzed using a
general inductive approach, dominant themes wer e summarized and interpre tive
analysis was done. Results: Key themes that emerge d addressed the impact of pain
(e.g. limitation, loss, social isolation, stigmatization) along with the process needed to
come to terms with it (acceptance, adaptation) and the transformative aspects of
creating art. Conclusions: This study confirms the depth of suffering associated with
the experience of chronic pain and the incredible resilience required of the creative
mind in over coming seriou s adversity in a way that fosters growth and fi nds new
meaning.
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 meanin gful 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 condi tions 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 aesthet ically 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 il lness 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 integr ative process involves new learning in all
relationships and experience. Regeneration is the process of creating or finding mea ning
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 wha t aspects might assist the person with pain in moving
forward?
Resilience
Resilience in psychology refers t o 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 de scribed 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 le arning that arise as a consequence of the str essful 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 & Zautr a, 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 exper ience 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 phenomeno logical 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 cont exts.
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 (paint ing, drawing, sculpting, mixed media), writing prose or
poetry, folk arts such as primitive rug hooking or working with colo rs 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 they were able
to continue creating art while living with pain, suggestions for others living with pain or
other adversity or any additional comme nts.
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 and mail it back to the primary investigator (ML) at the Pain Management Unit.
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 justi fiably 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 com pleted. 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
Participant
number
Duration of
pain Diagnosis
Pain severity
most days
(range)
Art before
pain?
Pain
interfere
with art
001 30 years Failed back OA
Arachnoiditis
4 (2–10) Yes Yes
002 7 years NP OA 4.5 (2–7) Yes professional Yes
003 7 years disc herniation spinal
stenosis severe OA knee
6.5 (4–9) Yes Yes
004 5.5 years PHN OA Fibro, TMJ 6.5 (5–10) Yes not as much
as I do now
Yes
005 17 years Post-traumatic neck
and shoulder pain OA
5 (4–8) Not as much as
I do now
Yes
006 8 years NP post-surgical 2 (1–5) Not as much as
I do now
No
007 28 years SLE DDD Low back
pain
4.5 (3–9) Yes not as much
as I do now
Yes
008 13 years NP spinal cord tumor 5.5 (3–10) Yes not as much
as I do now
Yes some
what
009 20 years Thromboembolic disorder
and ischemic pelvic and
leg pain
4 (–8) No somewhat
010 7 years Diffuse idiopathic skeletal
hyperostosis Spinal
stenosis
7.5 (3–9) Yes Yes
011 . 2 years Fibromyalgia OA 6 (5–8) Yes Yes
012 3 years Fibromyalgia Interstitial
cystitis
6 (4–9) not as much as
I do now
Yes
013 10 years Soft tissue strain
Fibromyalgia
5 (5–9) Yes Yes
014 50 years Fibromyalgia Spinal
and sciatic problems
7.5 (6–9.5) Yes Yes
015 7.5 years Low back pain caused
by injury
9 6.5v10 Yes Yes some
what
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 cause d 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 painting
002 Drawing, clay, paintings
003 Watercolor, wood carving
004 Painting, drawing
005 Gardening with flowers
006 Watercolor and drawing
007 Watercolor, oil, rug hooking, papier mache/clay
008 Fiber artist, drawing, rug hooking
009 Author/writer
010 Wildlife nature photographer and writer
011 Collage
012 Acrylic on canvas and rocks Watercolor/pencil art
013 Oil and watercolor paintings and many crafts
014 Paint (watercolor and oils acrylics), sculpture Illustrations, architectural drawings
015 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 adaptation s 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 example my hooking frame has been built especially for me.”
For othe rs, it was modifying how much 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 I want to. I must constantly modify my sessions, get up and walk
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-c omplex 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 quality work, 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 pain management
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 provides me an opportunity to redirect my focus or perhaps a distraction. It feels so much
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 a more positive state of mind, “art brings joy which is a distraction
from pain”, and “Early on I decided that pain would not limit my 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 blocks
2
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 transf orming 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 iden tified 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 cont rol. One
artist noted, “Chronic pain is hateful, so I look at pain as the enemy and I DO NOT 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.
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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 painti ng 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 determ ined 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 appre ciation 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 becomi ng 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 p eriods 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 (Choinie re 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 iden tity 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 artis ts 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 and
Under 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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