Running head: PLAYING OFF THE PAIN 1
Playing Off the Pain:
An autoethnographic study of video gaming as
pain-management in Autoimmune disorders
Sofia Styf
School of Arts and Creative Industries
London South Bank University
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Abstract: This autoethnographic study looks at gaming as means of controlling pain in
autoimmune disease. My personal experience as a gamer with two life-long chronic,
degenerative autoimmune diseases is compared to those of others in my situation. I found that
gaming at least can create a space where you can exist without pain being a constant factor
influencing each move or decision.
Key words: video games, chronic pain, pain relief, pain-management, autoimmune disorder,
autoethnography.
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Playing Off the Pain: An autoethnographic study of gaming as
pain-management in Autoimmune disorders
1) INTRODUCTION
I am 25 years old, and I have never been well. Not a single day of my life has gone by
where I was not in pain, or felt weak, feverish and nauseous. As a child, a lot of the symptoms I
experienced were attributed to allergies by the doctors my mother took me to. When I was
approaching my teens, these “allergies” became “growing pains” that later became the result of
“too vivid an imagination”. I was too young to be ill, a doctor established, thus my problem
could not be physical. I must be lying.
My hands and feet were swollen to a point where I could barely hold a pen or a spoon,
and my feet were too painful for me to wear shoes. The swelling aside, my weight was normal
throughout my childhood and teens, yet a lot of doctors and nurses suggested that I should try
diet and exercise to lose weight. Some suggested complementary medicine like homeopathy, or
special diets e.g. gluten free, lactose free or low starch, and I tried them all without much effect.
One particularly disinterested doctor went as far as to suggest that I should move out and start a
family of my own. I was 14 at the time.
In 2012, when I was 19 years old, a rheumatologist finally gave me a proper diagnosis.
By that time, I was in so much pain that I could not function, or even care for myself. I was
severely depressed with suicidal tendencies; I had been forced to drop out of my A-levels; and I
could barely get out of bed, get dressed, or walk around the house without support.
Unfortunately, the diagnosis did not offer the remedy I had hoped for all my life. Instead, what
my mother and I had suspected all along was confirmed. I had an autoimmune disorder. Or two,
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to be precise: Rheumatoid Arthritis (RA) and Ankylosing Spondylitis (AS). Instead of a cure, I
was prescribed steroids, disease modifying drugs, chemotherapy, biologics injections and large
amounts of pain relief; and it was explained to me that I would never, ever get to experience
what it is like to not be in pain.
As much as the verdict hurt on an emotional level, there was also a great sense of
vindication and relief that day. My pain was not imagined, and it was not a result of allergies,
growing pains, my weight, or even being fed up with living at home. I was chronically and
irreparably ill. I finally had a diagnosis on paper, a treatment plan aimed at slowing down the
disease progression and a pile of leaflets from Arthritis Research UK outlining coping strategies
for nigh on every imaginable, and a few unimaginable, situations.
At 25, the question I get asked the most when talking about my disability is: “But how
did you cope?” And the answer is simple: I played video games. It was always difficult for me to
keep up and play with the other children when I was little, but my brothers would always let me
play video games with them. As most of the games we had at the time required the use of mouse
and keyboard controls, and we were young children with less than amazing dexterity, my
brothers would divide up the controls between two or three of us. They would sit with me by the
family computer and tell me what the game was about and what I needed to do, which buttons
were mine to control and what those buttons did. In those moments, I realised that this was
something I could do just as well as, and even better than, other kids. I too could save the world.
But I also realised eventually that while I was gaming, the pain was not as bad. It was still there,
but somehow less intrusive and whilst I was focussed on a campaign, or immersed in a universe,
I could almost forget about it for a while. This is one of the reasons why video games became
such an important part of my life.
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Video games have become a huge industry since they rose to popularity in the 1980s. In
2016, the video games industry raked in $101.1 billion dollars globally, and that is expected to
rise to $108.9 billion by the end of 2017, and an incredible $128.5 billion by 2020 (MacDonald,
2017). Despite video games being so popular, there are a lot of negative associations toward
them. Many arguments against video games claim that playing them is inherently bad for one’s
physical and mental health. Arguments ranging from ‘it will ruin your eyesight’ to ‘it will make
you aggressive’ have been prevalent in my life as far back as I can remember, and rarely did I
hear anyone – other than my mother – discuss the benefits of playing video games. This attitude
was especially common in mainstream media, and to an extent it still is today. There are still
ongoing debates on whether video games are more harmful or helpful for players, and an article
that was printed in The Telegraph compared the pros and cons of playing video games as put
forth by different studies and researchers (Wells & Blagburn, 2017). Articles like this one are not
rare, in fact there are numerous articles available online that tally up the good or the bad side
effects of playing video games. However, twenty years after picking up my first ever video
game, I find more and more research put into the good uses of video games. Although there are
still a great many studies conducted that disparages video games as an art form and holds them
responsible for everything from aggression to poor academic performance, it is greatly
encouraging to see that many of these arguments are being proven groundless—for one there is
evidence that high video game usage is ‘associated with good intellectual functioning and
academic achievement’ (Kovess-Masfety, Keyes, Hamilton, Hanson, Bitfoi, Golitz & Pez,
2016). The positive effects gaming can have on various aspects of an individual’s life has been
put forth by different studies. Guarini (2013) listed nine ways video games can improve our
lives, according to science, e.g., playing video games can make us smarter (Glass, Maddox &
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Love, 2013), improve our eyesight (Handwerk, 2009), improve our reading skills (Franceschini,
Gori, Ruffino, Viola, Molteni & Facoetti, 2013), and we can even use video games to treat
depression, PTSD, and a range of other mental health conditions (Kühn, Gleich, Lorenz,
Lindenberger & Gallinat, 2014).
In his article, Guarini also references a 2011 study from Pain Management (Li,
Montaño, Chen & Gold), that examined how virtual reality (VR) games could be applied in
treating physical pain. It used Virtual Reality (VR) to ‘manage pain and distress associated with
a wide variety of known painful medical procedures.’ This study focused primarily on decreasing
acute pain in patients undergoing medical treatments for burns or cancer, and in the conclusion
states that ‘Virtual reality has consistently been demonstrated to decrease pain, anxiety,
unpleasantness, time spent thinking about pain and perceived time spent in a medical
procedure’. This study also touches on VR applications for chronic pain, and mentions the
successful application of VR alongside hypnosis as a potential treatment, based on results from a
case study (Oneal, Patterson, Soltani, Teeley & Jensen, 2008) of a chronic neuropathic pain
sufferer who had a 5-year history of failed treatments.
In the following sections, I will discuss the possibility that not only VR, but also regular
video games can have positive effects on chronic pain in people with autoimmune illnesses.
Using autoethnography as my method, I aim to present my experiences of using video games as
pain management. I deal with the symptoms of each of my conditions every day; and one of the
most prominent symptoms of both is physical pain. Aside from the fatigue, this is also, in my
opinion, one of the most difficult symptoms to live with on a day to day basis.
Since my diagnoses in 2012, I have been prescribed seven different pain relief
medications to manage my pain symptoms, replacing one after another when they became
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ineffective or the side effects proved too severe to cope with. Some medicines had side effects
that were bad enough that I often-times elected not to take the medicine, and instead opted to
handle my pain in other ways. Video games were already my pain management of choice, and
often I felt they helped me more than the medications did. For this reason, I hope to create a
discussion around the use of video games in treating chronic pain, and how doing this could have
positive effects on people with autoimmune disorders. My thesis, unsurprisingly, is that this
study will find evidence for gaming as an effective coping mechanism for chronic pain.
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2.1) AUTOETHNOGRAPHY AS THEORY
When I first met my rheumatologist in 2012, she assessed how much swelling there was
around my joints, examined which joints appeared to be more sensitive and sore than others, and
looked at my x-rays to see where the permanent damage to my bones was the worst. She started
me on the medications she believed would have the greatest benefit possible, without causing too
many side-effects, and she also discussed what kind of life-style changes would be beneficial for
me. One of the things she suggested, and the only thing we disagreed on, was that I should stop
playing video games.
In the eyes of the rheumatologist, playing video games, which required me to sit still for
long periods of time, would be detrimental to my health. It would serve me better to try to
exercise and stretch to keep my joints active and fully operational. I argued that I do not feel stiff
or in pain whilst I am playing video games, and that, on the contrary, video games were some of
the very few things that I felt gave me the motivation to stay alive. As a leading researcher into
my kind of arthritis, this interested her and she asked me what exactly I meant when I said I did
not feel like I was in pain when I played games. At the time, I found it incredibly difficult to
explain exactly how playing games affected me, and that is what made me want to undertake this
study. ‘Autoethnographies begin with the thoughts, feelings, identities, and experiences that
make us uncertain—knocking us for sense-making loops—and that make us question, reconsider,
and reorder our understandings of ourselves, others and our worlds (Adam, Holman Jones,
Ellis, 2014).’
I am hoping that by juxtaposing my personal experience to that of others in similar
situations, and doing a thorough search for literature supporting or refuting my thesis, I would be
able to finally answer the question.
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At a meeting with my supervisor, I was introduced to autoethnography as a research
method and after reading a few articles she gave me, I felt that this format would suit my topic
very well. I felt that I could best represent my research using autoethnography because, ‘our
ideas for research projects are often—perhaps always—guided by the ideas, feelings,
experiences, and questions we have in and about our lives. Rather than silence or disguise the
personal reasons that lead us to choose our research projects, autoethnographers make use of
personal experience and subjectivity in designing their research (Ibid.).’ I did not want to have
to write about a subject that was so personal in the clinical and voice-less way academic research
is usually presented. I found that, ‘authentic auto-ethnography and creative research can
demand risk-taking and vulnerability on the part of the researcher, which traditional academic
institutions can find challenging, if not unpalatable (Coffey, 2017).’
I was encouraged to find out more about this method of study and I became even more
excited at the idea of an autoethnographic dissertation when I discovered that ‘Autoethnographic
stories are artistic and analytic demonstrations of how we come to know, name, and interpret
personal and cultural experience (Adams, Holman Jones & Ellis, 2014).’
Autoethnography, unlike regular ethnography, does not separate the researcher from the
topic of research, but rather includes the lived experiences, feelings, and thoughts of the author
as part of the research. In simple terms, autoethnography, ‘shows people in the process of
figuring out what to do, how to live, and the meaning of their struggles (Ibid),’ and ‘strives for
social justice and to make life better (Ibid).’
To properly investigate the effectiveness of playing video games as a method of pain
relief, I first felt compelled to examine literature that discusses positive effects of playing video
games. Coffey (2017) says that for autoethnography to succeed, ‘it must take us beyond the
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presented story to something of ourselves, beyond the autoethnographer’s original design.’ From
this I understood that I would need to look at my original thesis from a wider perspective as well.
It would not be enough to only take my own feelings into account. I grew interested in how pain
is perceived and experienced by other patients, and subsequently how it is treated by medical
professionals. I also wanted to look at how pain occurs in RA and AS—by which I mean to say,
what causes it, and how it is interpreted by our bodies and brains—and compare coping
strategies between myself and other people with autoimmune illnesses.
To do this I felt that I needed to gather information from other people with autoimmune
disorders, as it is important in my eyes to prove that I am not the only one who finds video
games therapeutic against pain. ‘Autoethnography is a qualitative method—it offers nuanced,
complex, and specific knowledge about particular lives, experiences, and relationships rather
than general information about large groups of people (Adam, Holman Jones & Ellis, 2014).’
To present my theories and findings honestly, and clearly, it was important while
creating and compiling my research to focus on, ‘human intentions, motivations, emotions, and
actions, rather than generating demographic information and general descriptions of interaction
(Ibid).’
Even though autoethnography deals with personal stories, and allows the author a great
deal of creative freedom, it is still important to consider how to best represent the questions
asked, and the information gathered. Adam, Holman Jones & Ellis (Ibid) write, ‘Questions about
research practice and craft require autoethnographers to be invested in—and accountable to—
the creation of insight and knowledge and the engagement of compelling aesthetic practices. But
these are not the only commitments autoethnographers must make when choosing to do
autoethnography. They also must be equally committed to conducting their work responsibly and
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ethically; they must consider the personal, relational, and institutional risks and responsibilities
of doing autoethnography.’
I will be closely following the guidelines and ideals outlined in Autoethnography
(understanding qualitative research) (Ibid.) as I found that the authors’ have created fantastic
summaries of what the core ideals of autoethnographic projects should be. The core ideals are
outlined as follows:
‘• Recognizing the limits of scientific knowledge (what can be known or explained),
particularly regarding identities, lives, and relationships, and creating nuanced, complex, and
specific accounts of personal/cultural experience
• Connecting personal (insider) experience, insights, and knowledge to larger
(relational, cultural, political) conversations, contexts, and conventions
• Answering the call to narrative and storytelling and placing equal importance on
intellect/knowledge and aesthetics/artistic craft
• Attending to the ethical implications of their work for themselves, their participants,
and their readers/audiences.’
These core ideals created the framework for how I conducted my study, in terms of
gathering and presenting information, and then combining and contrasting it with my own
experiences.
Although autoethnography is a hermeneutic approach, we will be triangulating our
research by use of traditional positivist data-collection to support my thesis. To gather
information from other people with autoimmune disorders, I felt that I needed to conduct a small
survey to learn whether I was alone in feeling that playing games could be a valid method of pain
relief, as I did not have the opportunity to conduct as many close interviews—or do the kind of
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in-depth ‘field-work’—as I would have preferred. A survey would allow me to collect a lot of
information, although the information may not be as visceral as what I provide of my own
experiences.
When creating the questionnaire, I started by writing a summary about myself and my
research, so that anyone who responded to the questionnaire would understand what their
answers would be used for. I then moved on to creating the questions. Initially I asked for
anyone who had an autoimmune disorder and a regular gaming habit to fill out the questionnaire,
but in hindsight it might have been a better choice to ask for anyone with chronic pain and a
gaming habit to give their response, and ask for the cause of their chronic pain, since not every
autoimmune disorder causes chronic pain in the afflicted. Since I didn’t want to create biased
questions, I kept most of my questions direct. I inquired into which autoimmune disorder(s) the
informants had, if pain was a primary symptom of their conditions, and how they usually dealt
with their pain. I then asked if video games helped to alleviate the experience of pain while they
were playing—this was asked as a multiple-choice question, where the informants could answer
yes, no, sometimes, or ‘other’ if they wanted to give a written response. Including the ‘other’
option proved detrimental, as it created responses that invariably did not actually answer the
question, and those responses ended up being removed. They were then asked to describe in a
few words in which ways video games helped them to cope with their autoimmune disorder(s).
Finally, they were asked if they were open to being contacted with follow-up questions if the
need should arise. I gathered a total of 146 responses, but kept only the responses of people who
had specifically autoimmune disorders, and who did specifically play games. After removing all
the irrelevant responses, I had 78 left.
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2.2) AUTOIMMUNITY AND CHRONIC PAIN
Although I am presenting an account of my experiences—and the experiences of
others—in dealing with chronic pain through video games, it is important to recognise that
subjective experience alone cannot prove my thesis that video games can be used to relieve pain.
I have to acknowledge what is scientific fact, and what is hypothetical—or hopeful—discussion.
I must also bear in mind the original questions I asked myself when I began this study: how is
pain experienced, how is it treated, how does it occur in autoimmune disorders, and what is the
effectiveness of playing video games as a method of pain relief.
To begin with I want to outline pain as a biological and psychological process, and
highlight the difference between acute pain and chronic pain. Pain is defined as an ‘unpleasant
sensory and emotional experience associated with actual or potential tissue damage
(International Association for the Study of Pain, 1994).’ Pain is experienced when the brain or
spinal cord receives signals from specialised pain receptors throughout the body that indicate
harm—these pain receptors cause the spinal cord to send out a reflex to retract from whatever
stimulus is causing pain, and then the brain sends out signals for the body to begin repairing
itself (Jacques, 2017). This is what happens when we experience acute pain. Acute pain
continues only for as long as the body detects tissue damage, and when it has healed that tissue,
the pain signals stop. In some cases, pain receptors continue to fire, even after the initial injury
has healed—this is what constitutes chronic pain (Ibid.). In autoimmune disorders, the immune
system misinterprets healthy cells as foreign invaders, and subsequently attacks and destroys
them, which can cause pain responses in the body (Arthritis Research UK, 2017), that in my
case, and the case of the majority of those I surveyed becomes chronic pain.
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Chronic pain treatment is usually tailored to the specific needs and wishes of each
individual. In my case, I receive non-steroidal anti-inflammatory medications and opioid pain
medications to be taken daily, and follow a diet plan that my mother and I created together after
years of research into various other anti-inflammatory diets. Following the medical treatment
plan laid out by my rheumatologist, coupled with the life-style changes that worked best for me,
I have managed to keep my chronic pain from getting significantly worse over the past six years.
I still experience a great deal of pain daily, but the good days—read, less painful—that I
experience now were unimaginable to the me six years ago. Only on my worst days am I in the
amount of pain that I experienced before treatment, where I hurt too much to even dress myself
unaided. But even with all the progress I have made, the chronic pain that remains take a
psychological toll that cannot be overlooked.
2.3) EFFECTS OF CHRONIC PAIN
Being in pain constantly affects my ability to function not just physically, but mentally
as well. Having to focus on something can feel impossible at times, because there is always pain
eating away at me when I am doing something. Chronic pain changes how I think. The more
pain I am in, the harder it is for me to rationalise, make decisions, or just keep a good mood. This
has been observed in a 2008 study at Northwestern University. The study examined whether
long-term pain changed how the brain behaved while at rest. ‘It seems that enduring pain for a
long time affects brain function in response to even minimally demanding attention tasks
completely unrelated to pain (Baliki, Geha, Apkarian & Chialvo, 2008).’
The study compared the brain activity of a control group and a group of chronic back-
pain sufferers as they performed a simple task with a finger-spanning device. They found that
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while the task was achieved just as well by both groups, ‘the brain activity is dramatically
different.’ They noted that this raises the question of, ‘how other behaviors are impaired by the
altered brain activity (Ibid.).’
The results from this study backs up my feeling that chronic pain affects how I think. The
authors concluded the study by stating that their, ‘findings suggest that the brain of a chronic
pain patient is not simply a healthy brain processing pain information, but rather is altered by
the persistent pain in a manner reminiscent of other neurological conditions associated with
cognitive impairments (Ibid.).’
Chialvo, one of the authors of the study, states in an article (Paul, 2008) about his
research that the, ‘constant firing of neurons in these regions of the brain could cause permanent
damage. We know when neurons fire too much they may change their connections with other
neurons and or even die because they can't sustain high activity for so long.’ He goes on to say
that if you are a chronic pain patient, ‘you have pain 24 hours a day, seven days a week, every
minute of your life, that permanent perception of pain in your brain makes these areas in your
brain continuously active. This continuous dysfunction in the equilibrium of the brain can
change the wiring forever and could hurt the brain.’
I find this research relevant to our question of how video games can be an effective pain
management method because it supports my theory that chronic pain is not just a physical event,
but also a psychological one. This is part of why I believe that stimulating the brain through
playing video games is greatly beneficial in combating chronic pain. A different study (Kühn,
Gleich, Lorenz, Lindenberger & Gallinat, 2014) has found that certain video games—this study
used specifically Super Mario 64 DS (Nintendo EAD, 2004)—can change grey matter in the
brain! Video games can have a real, measurable, effect on our brains. ‘Comparing a control
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[group] with a video gaming training group that was trained for 2 months for at least 30 min per
day with a platformer game, we found significant grey matter (GM) increase in right
hippocampal formation (HC), right dorsolateral prefrontal cortex (DLPFC) and bilateral
cerebellum in the training group’
I found this study incredibly encouraging when I first came across it. I can feel the effect
chronic pain has on my thinking—when my pain is persistent I feel almost drunk, but without the
pleasant buzz you might expect with intoxication—and yet I have never been able to find
evidence that suggests this brain fog is related to my chronic pain. I have just felt certain that it
must be. It is only when I am in a lot of pain that I cannot hold on to a strand of thought, my
words become slow and slurred, and communicating becomes difficult and frustrating. This
study suggests that playing video games, or at the very least playing Super Mario 64 DS,
‘augments [grey matter] in brain areas crucial for spatial navigation, strategic planning,
working memory and motor performance going along with evidence for behavioral changes of
navigation strategy. The presented video game training could therefore be used to counteract
known risk factors for mental disease such as smaller hippocampus and prefrontal cortex volume
in, for example, post-traumatic stress disorder, schizophrenia and neurodegenerative disease
(Ibid.).’
2.4) POSITIVE PSYCHOLOGY
Another reason why I believe video games are effective in treating chronic pain is
because they have the potential to effect the release of our feel-good chemicals. Simply put, they
can make us happy. ‘The science behind video game enjoyment centers on a pair of body
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chemicals, endorphins and dopamine, which are responsible for feelings of pleasure and well-
being. These chemicals are abundant during positive game-playing experiences (Lee, 2013).’
When we are playing a good game, we are directly effecting our brains in the same way
that exercising or taking morphine would effect our brains. ‘Endorphins are commonly
associated with moments of euphoria or intense activity. You might be familiar with the
endorphin rush, a bump of good vibes, from a good workout. These brain chemicals actually
come from a variety of factors: stress and pain are among the most common. Endorphins help
the body reduce the perception of pain and manage stress more effectively, much the same way
that drugs like morphine and codeine affect the body. Endorphins make it easier to enjoy
yourself (Ibid.).’
The fact that we can effect our brain chemistry through positive experiences has also
been discussed by McGonigal (2012a) who wrote that, ‘the prevailing positive-psychology
theory that we are the one and only source of our own happiness isn’t just a metaphor. It’s a
biological fact. Our brains and bodies produce neurochemicals and physiological sensations
that we experience, in different quantities and combinations, as pleasure, enjoyment,
satisfaction, ecstasy, contentment, love, and every other kind of happiness. And positive
psychologists have shown that we don’t need to wait for life to trigger these chemicals and
sensations for us. We can trigger them ourselves through scientifically measurable autotelic
activities.’
McGonigal continues on to say that if we provoke our curiosity with ambiguous visual
stimuli, ‘we experience a rush of “interest” biochemicals also known as “internal opiates.”
These include endorphins, which make us feel powerful and in control, and beta-endorphin, a
“well-being” neurotransmitter that is eighty times more powerful than morphine (2012a).’ Based
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on this statement, video games that generate curiosity and interest in the player have the potential
to trigger the release of these “internal opiates” as McGonigal calls them.
When we consider the brains chemical responses to positive emotions, the discovery
that video games can have the ability to make us curious, interested and happy is quite
significant. It is important to note, however, that video games do not make us happy on their
own, video games—by definition—require that one participates, that one plays them.
Positive psychology theorist Csíkszentmihályi (2002) discovered in his research that,
‘happiness is not something that happens. It is not the result of good fortune or random chance.
It is not something that money can buy or power command. It does not depend on outside events,
but, rather, on how we interpret them. Happiness, in fact, is a condition that must be prepared
for, cultivated, and defended privately by each person. People who learn to control inner
experience will be able to determine the quality of their lives, which is as close as any of us can
come to being happy. Yet we cannot reach happiness by consciously searching for it. “Ask
yourself if you are happy,” said J. S. Mill, “and you cease to be so.”’ Csíkszentmihályi managed
to outline in his work that we are all ultimately in charge of creating our own happiness. He
states that, ‘how we feel about ourselves, the joy we get from living, ultimately depends directly
on how the mind filters and interprets everyday experiences (Ibid.).’
I mention Csíkszentmihályi’s work because his theory on optimal experience
investigated the innate ability of each person to create a state of happiness for themselves
through challenge, interest, and deep focus on an action or task. He called this flow, and explains
it as, ‘the state in which people are so involved in an activity that nothing else seems to matter;
the experience itself is so enjoyable that people will do it even at great cost, for the sheer sake of
doing it (Ibid.).’
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Csíkszentmihályi’s work becomes important to our discussion on using video games as
pain relief, because playing a good video game is, in effect, a flow-inducing activity. It is also
important to our discussion because Csíkszentmihályi examines our ability to control our
consciousness to change our experiences. He writes that the functions of the consciousness is, ‘to
represent information about what is happening outside and inside the organism in such a way
that it can be evaluated and acted upon by the body. In this sense, it functions as a clearinghouse
for sensations, perceptions, feelings, and ideas, establishing priorities among all the diverse
information (Ibid.).’
He also discusses the ability of our nervous system to effect itself, stating that the
human nervous system has, ‘become so complex that it is now able to affect its own states,
making it to a certain extent functionally independent of its genetic blueprint and of the objective
environment. A person can make himself happy, or miserable, regardless of what is actually
happening “outside,” just by changing the contents of consciousness (Ibid.).’ Changing the
contents of consciousness might sound challenging, or even impossible, at first. I believe that
this is something that can be learned over time, with practice, much in the same way that a
person might learn to meditate. The effectiveness of mindful meditation as pain relief has
previously been tested both in people with chronic pain (Morone, Greco, & Weiner, 2008) and
people experiencing acute pain (Zeidan, Gordon, Merchant, & Goolkasian, 2010) with
encouraging results.
It is also worth mentioning that cognitive behavioural therapy (CBT) is based on the
idea that we can effectively ‘edit’ our way of thinking and behaving to alleviate symptoms of
depression and anxiety, and cope more effectively (NHS Choices, 2017).
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Although we can exert a great deal of control over our brains and consciousnesses with
practice, Csíkszentmihályi (2002) also points out that our brains are not all powerful. He
mentions that our nervous system, ‘has definite limits on how much information it can process at
any given time. There are just so many “events” that can appear in consciousness and be
recognised and handled appropriately before they begin to crowd each other out.’
In terms of using video games as pain relief, the limitations of our brains and nervous
systems are also something that we can learn to take advantage of; we should learn to appreciate
that our brains can only do so much at a time. As Csíkszentmihályi puts it, our thoughts, ‘have to
follow each other, or they get jumbled. While we are thinking about a problem we cannot truly
experience either happiness or sadness. We cannot run, sing, and balance a checkbook
simultaneously, because each one of these activities exhausts most of our capacity for attention
(Ibid.).’
Following this same logic, although pain is not a conscious choice, we can prevent it
from appearing at the forefront of our consciousness while we are thinking about video games,
because our capacity for attention is limited. Csíkszentmihályi further writes that, ‘because
attention determines what will or will not appear in consciousness, and because it is also
required to make any other mental events—such as remembering, thinking, feeling and making
decisions—happen there, it is useful to think of it as psychic energy. Attention is like energy in
that without it no work can be done, and in doing work it is dissipated. We create ourselves in
how we invest this energy. Memories, thoughts and feelings are all shaped by how we use it. And
it is an energy under our control, to do with as we please; hence, attention is our most important
tool in the task of improving the quality of experience (Ibid.).’
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Since we can, to a great extent, choose what to spend our attention—our psychic
energy—on, we can also ultimately choose to not spend it on the pain we are experiencing. In
my experience, not thinking about the pain is not going to remove the pain, nor is it going to
remove the root cause of the pain, but when we do not think about being in pain, the pain
becomes more bearable.
2.5) FLOW AS PAIN RELIEF
Now that we have discussed the ability that each person has to control and change her
own conscious thoughts, or rather, choose where she places her attention, I want to focus on how
exactly video games are so effective at capturing our attention. What makes video games so good
at inducing flow states in people? Before I can answer this question, let me bring us back to our
definition of flow—‘the state in which people are so involved in an activity that nothing else
seems to matter.’ A person in flow can be so focussed on what they are doing that time becomes
irrelevant, hunger becomes irrelevant, and as in my case; pain becomes irrelevant.
Although referring to it as flow is relatively new—Csíkszentmihályi chose the term
after finding in his interviews that people often referred to the experience as being carried by a
water current, flying, or flowing (Ibid.)—optimal experience, or flow states, have been described
throughout history and in different cultures before. Csíkszentmihályi explains that, ‘during the
course of human evolution, every culture has developed activities designed primarily to improve
the quality of experience (2002).’
McGonigal (2012) analyses Herodotus’ story about the ancient Lydians surviving
eighteen years of famine through engaging in games so entirely on one day so as to not feel any
hunger, and then the on next day to eat and abstain from games, and continuing to alternate as
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such. She explains that ‘we often think of immersive gameplay as “escapist,” a kind of passive
retreat from reality. But through the lens of Herodotus’ history, we can see how games could be
a purposeful escape, a thoughtful and active escape, and most importantly an extremely helpful
escape.’ She further explains that for the ancient Lydians, games, ‘made life bearable [and] gave
a starving population a feeling of power in a powerless situation, a sense of structure in a
chaotic environment [and] a better way to live when their circumstances were otherwise
completely unsupportive and uninhabitable.’
Just like the ancient Lydians could immerse themselves so entirely in games to forget
their hunger, in much the same way people with chronic pain today could use video games to
forget their pain. McGonigal has written about the power games can have to make life happier,
more meaningful, and more importantly, she has written about why games can make us happy.
She explains that games make us happy because, ‘they are hard work that we choose for
ourselves, and it turns out that almost nothing makes us happier than good, hard work (Ibid.).’
Now admittedly, in my mind, work and fun are not usually thought of as being the
same. But I also do not think of games as hard work. As McGonigal goes on to write, we play
games, ‘and we’ve been taught to think of play as the very opposite of work. But nothing could
be further from the truth. In fact, Brian Sutton-Smith, a leading psychologist of play, once said,
“The opposite of play isn’t work. It’s depression.” (Ibid.)’
As I have already mentioned, chronic pain has a very prominent psychological effect on
the afflicted as well as the physical, and, in fact, depression and chronic pain have a very high
comorbidity (Holmes, Christelis & Arnold, 2013). McGonigal points to the clinical definition of
depression, stating that when we are depressed, ‘we suffer from two things: a pessimistic sense of
inadequacy and a despondent lack of activity. If we were to reverse these two traits, we’d get
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something like this: an optimistic sense of our own capabilities and an invigorating rush of
activity (2012).’
She goes on to point out that there is no clinical psychological term that describes this
positive and opposite condition to depression, but that it is still a, ‘perfect description of the
emotional state of gameplay. A game is an opportunity to focus our energy, with relentless
optimism, at something we’re good at (or getting better at) and enjoy. In other words, gameplay
is the direct emotional opposite of depression (Ibid.).’
It can thus be said that video games are effective at inducing flow states, because they
are mechanically and emotionally opposite to depression—video games put forward the
opportunity to participate in, and focus on, invigorating activity, which stimulates the brain and
creates feeling of enjoyment and well-being. According to McGonigal, when we are playing a
good game, and voluntary tackling unnecessary obstacles, ‘we are actively moving ourselves
toward the positive end of the emotional spectrum. We are intensely engaged, and this puts us in
precisely the right frame of mind and physical condition to generate all kinds of positive
emotions and experiences. All the neurological and physiological systems that underlie
happiness—our attention systems, our reward center, our motivation systems, our emotion and
memory centers—are fully activated by gameplay (Ibid.).’
It is when we play video games so intently that we achieve the flow state—where our
attention is focused entirely on the task at hand, and nothing else in the world seems to matter—
that we can experience the greatest relief from the burden of chronic pain. Not only because our
limited attention is pulled away from the pain we are experiencing, but also because the
experience of flow itself is immensely enjoyable.
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2.6) SUPERBETTER
Although it is not a video game, I want to bring attention to a project that played an
important part in inspiring me to write about my experiences of dealing with chronic pain
through video games. McGonigal (2012a) recounts how she struggled to recover from post-
concussion syndrome in the summer of 2009, and that after the four most miserable weeks of her
life, she arrived at the conclusion that she was either going to, ‘kill [herself] or [she was] going
to turn this into a game.’ McGonigal had over a decade of experience working as a game
designer, and—while rising from a point in her life of severe adversity—she invented an
alternate reality game for herself that she dubbed Jane the Concussion Slayer. The objective of
the game was to give herself and her close friends a family an active role in her recovery.
She explains the process of research that she went through as she began developing her
recovery-based game from various medical journals and reports. She writes that she, ‘pieced
together what experts agree are the three most important strategies for getting better and coping
more effectively—not only from concussions, but any injury or chronic illness. First: stay
optimistic, set goals, and focus on any positive progress you make. Second: get support from
friends and family. And third: learn to read your symptoms like a temperature gauge. How you
feel tells you when to do more, do less, or take breaks, so you can gradually work your way up to
more demanding activity (Ibid.).’
Based on the three strategies that she discovered, she created the alternate reality game
SuperBetter, and described it as a, ‘superhero-themed game that turns getting better into a
multiplayer adventure. It’s designed to help anyone recovering from an injury or coping with a
chronic condition get better sooner—with more fun, and with less pain and misery, along the
way (Ibid.).’
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The rules of the game are referred to as missions, and are simple to follow and allow
each player to completely customise the gameplay experience to suit their injury or illness. In
brief, the five missions – paraphrased – are as follows:
Mission #1: Create your SuperBetter identity. You can be anyone you want, from any
story you love. You will borrow their superpowers, and play the leading role in this adventure.
This mission is meant to make the player feel empowered, rather than powerless.
Mission #2: Recruit your allies. Pick the friends and family members you want to count
on the most, and give each ally a specific mission. One of your allies should give you daily or
weekly achievements. This mission ensures that you have the support you need from near and
dear ones.
Mission #3: Find the bad guys. Pay attention to anything that makes you feel worse, and
put it on your bad-guys list. Some days, you’ll be able to battle the bad guys longer—some days
not so long. Every time you do battle, you’ll want to make a great escape before the bad guy
knocks you flat. If you vanquish one forever, you can take it off and claim the permanent victory.
This mission asks you to identify the triggers for your symptoms, which will make it easier for
you to avoid pain and suffering.
Mission #4: Identify your power-ups. Make a list of fun things you can do at a
moment’s notice to make yourself feel better. Call on them whenever the bad guys are getting
the better of you. This mission gives you specific positive things that you can do for yourself to
avoid feeling depressed or suffering under negative stress.
Mission #5: Create a list of goals for yourself, ranging from things you are 100 percent
positive you can do right now to things you might not have been able to do even in your wildest
dreams before you got sick or hurt. Everything on this list should be something that would make
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you feel awesome and show off your strengths. The purpose of this mission is to use it as your
goal post to measure your progress by. When you start achieving the goals listed in Mission #5,
you have empirical evidence of your improvement.
Each of these missions serves a specific purpose toward aiding recovery and making the
player feel better. In my opinion, the genius of this game is that it motivates the player to look
closer at their symptoms, what causes them, and what makes them better, and it also motivates
the player to ask for help in a way that might not be as difficult as directly asking your friends
and family for help. You have the opportunity to invite your near and dear ones to participate in,
and potentially enjoy, your recovery process, by making it a social and fun experience, and by
making them feel like an important part of your improvement.
McGonigal says of her own experience using the game that she can not say for sure that
she got better any faster that she would have without playing the game, but that she suspects it
helped a great deal. She continues, ‘What I can say for sure is that I suffered a great deal less
during the recovery as a direct result of the game (Ibid.).’ This I feel is the most important part
of the whole account of her experience with creating and playing SuperBetter—playing the game
did not cure her, but it greatly reduced the feeling of suffering.
When dealing will injury or illness, especially chronic illness and chronic pain, it is
important to recognise that healing or recovering is a tough process that is physically and
emotionally draining, and that—sometimes—full recovery will never be possible regardless of
how much you might want it. As McGonigal phrases it, ‘when you’re sick or in pain, getting
better is all you want. But the longer it takes, the harder it gets. And when the tough reality we
have to face is that getting better won’t be easy, a good game can better prepare us to deal with
that reality (Ibid.).’
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SuperBetter has since its initial conception been adapted into a book (McGonigal,
2016), and developed into a website and a smartphone app that players document their
experiences through, and many have shared their experiences of using SuperBetter in their
recovery journeys on blogs and social media. Recovering through gameplay is an idea that seems
to appeal to a great deal of people, which gives me even more encouragement that my thesis
about video games can provide effective pain relief will be proven correct.
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3.1) POST-TRAUMATIC GROWTH
McGonigal (2012b) presented the experiences that led her to create SuperBetter in a
TED Talk. In this talk she also mentions some of the research that she came across while trying
to answer the question of how a trivial game like SuperBetter could make its players feel
happier, better understood, and more empowered. ‘Some people get stronger and happier after a
traumatic event,’ McGonigal stated in her talk (Ibid.), and this is what was happening to
SuperBetter players. She found that this is related to a phenomenon that scientists call Post-
Traumatic Growth (Tedeschi & Calhoun, 1996). After experiencing trauma, not only can a
person’s self-perception change positively, but they might become more appreciative of
interpersonal relationships, or they might develop a new life philosophy (Ibid.). This is an
experience that I feel I can relate to, and it is also one that applies to my theory of video games as
pain relief.
One of the definitively most difficult times in my life was experienced roughly nine
months after I was diagnosed with autoimmune disease. About six months after beginning my
second treatment plan, I had an appointment with my rheumatologist to determine if the
treatment I was undergoing was effective—if there had been any progress made in slowing down
the disease progression. I walked into the rheumatologist’s office, accompanied by my mother,
and feeling not much different than I had six months prior. I was incredibly frustrated that I was
still ill, and still very much in pain, but hopeful that I could be offered a different, more effective,
treatment.
As the rheumatologist conducted her examination of my joints (done by squeezing them
and determining the amount of swelling and sensitivity experienced), I expressed my frustrations
that the medications I was taking were not working, and then expressed my desire to move onto a
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different medication as soon as possible. Although I was aware, logically, that no medication
available offered a cure, I still had not accepted, emotionally, that I would never become entirely
free of my symptoms and wanted to find a medication with immediate and remarkable effect.
But when my rheumatologist explained to me that she would not change my medications at all,
only prescribe me more painkillers, I felt angry and questioned why I had to continue taking a
medication that I did not feel was working for me.
My rheumatologist explained that since I was a ‘young woman of child-bearing age’, I
would not be eligible for escalated treatment until they were certain that I would not want to
have children later in life. I was taken aback by this statement at first, then I assured my
rheumatologist, with all the confidence only a stubborn woman fresh out of her teens can muster,
that I had no interest in having children now, and would never be interested in the future. In
response, my rheumatologist simply stated that this was fortunate, as pregnancy and child-
rearing might not be easily achieved for me due to my ill health, but that she would still not risk
putting me on a different treatment just yet, not so long as my condition was stable, and not
deteriorating. She then re-iterated what she said to me when I first got my diagnoses—I could
not expect to ever be cured, but I could expect to get better treatment in the future. To be honest,
the latter part fell on deaf ears.
I could not expect a cure. This was the point at which I finally and fully realised that the
plans I had made for my life would not work out. The work I wanted to do seemed too difficult,
the places I wanted to go seemed unreachable, and the dreams of one day living happily and
without pain now felt entirely impossible. I would never wake up a single morning without
stiffness and pain. All my life plans were based on the idea that I would one day be well enough
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to do extraordinary things, things that were currently impossible. It was now painfully clear to
me that things that were impossible to me now would be impossible to me forever.
At this point I fell into a deep depression, and the self-harming and suicidal ideation that
I had gone through in my teens, before diagnosis, returned in full force. If I would never achieve
any of my life plans, what was the point in living? I suddenly had nothing to look forward to. I
felt like there was nothing I could achieve, there was nothing within the scope of my abilities that
would actually give me joy or fulfilment. I could not even dream of having a family of my own
one day. What was the point? I kept asking myself this question, over and over. What is the point
of my life now?
During the worst weeks of this period, I did not play video games at all. I did not have
the emotional capacity to be invested in anything apart from eating, sleeping, or self-harming. I
would lie in my bed and cuddle my dogs when I could, but when I did not have my dogs with
me, I would go back to sleeping, or eating, or self-harming. My pain became so bad at this point
that even the increased dosage of pain medication I received was not taking the edge off. I felt
everything just as keenly as if I had taken no pain killers at all.
After a while, at the insistence of my family, I began to take anti-depressants again, but
struggled for a very long time to open up to my family about the hurt and upset I was
experiencing and what was causing it. But it was during this time that my mother began gently
guiding me towards pursuing studying again, and she eventually convinced me to apply for
university. It was also during this time that my mother suggested that I pursue video games as a
career. This simple guidance toward a new goal distracted me from my spiral of self-destruction,
and slowly but surely, I started thinking about a new, different, future. And then I found myself
wanting to play again.
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I picked up my old video gaming habit, and spent more time sitting in front of a game
instead of lying down in bed. I started to experience moments of intrigue and excitement as I
played through a new game my brothers had bought me to cheer me up. In one of these moments
of happiness, I looked down at the last healing cuts on my arms and realised that I very nearly
lost my will to live, and perhaps my very life, just to being diagnosed with a chronic illness. And
this despite the fact I have been ill ever since childhood. The confirmation that I was sick—and
that my illness would require me to acknowledge a great many things as impossible for me—
almost killed me. It was a greatly traumatising experience, but I am happy to say that I stand on
the other side of it now.
My body still hurts, and I am still mourning the things I will never do, and the things I
will never have, but I am alive, I am coping, and I am finding that I have more confidence now,
and a greater interest in the new possibilities than I ever thought possible. And to my great
astonishment, I am physically in better shape now than I was when I went through this trauma. I
am finally on better treatments. I hurt, but I hurt less. I have stiffness, but it is less stiffness. But
more importantly, I have a greater appreciation for my family. All through the illness from
childhood, and the psychological impact it has had on me throughout my life, my family has
carried me through. They supported me through treatments, accompanied me to hospital
appointments, and forgave me when I lashed out toward them in anger and frustration. I have not
self-harmed in four years. I have grown from my experiences, become more resilient, learned to
appreciate the support I have from my family, and found the best way for me to cope, and take
enjoyment out of life, in video games.
Video games have helped me survive through childhood illness, chronic illness, mental
illness, and chronic physical pain, and have been the single most important coping mechanism in
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my life since I first started experiencing pain as young child. Playing games—even though it
does not cure the symptoms of my condition at all, and does not take away the causes of pain or
anxiety at all—takes away the suffering.
3.2) RESULTS OF THE SURVEY
The survey consisted of five questions, three of which were open-ended, and two of
which were multiple choice. The survey was shared in autoimmune support groups on
Facebook, as well as through Twitter and Tumblr. The questions, and their responses, were as
follows:
1) Which autoimmune disorder(s) do you have?
a. 64 had Ankylosing Spondylitis
b. 13 had Psoriatic Arthritis
c. 9 had Rheumatoid Arthritis
d. 4 had Fibromyalgia
e. 2 had Crohn’s Disease
f. 2 had Hashimoto’s Thyroiditis
g. 1 had Sjögren’s Syndrome.
(The total number is higher than the number of informants due to several
informants having comorbid autoimmune disorders.)
2) Is pain one of the most prevalent symptoms of your autoimmune disorder(s)?
a. 93.6% (73) Yes
b. 5.1% (4) Sometimes
c. 1.3% (1) No.
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3) How do you usually deal with the pain symptoms of your autoimmune disorder(s)?
a. 51 mentioned Medication
b. 29 mentioned Mild exercise/Stretching
c. 24 mentioned Distraction (listening to music, reading, watching TV, video
games, crafting)
d. 18 mentioned Heat/Cold packs/Hot Baths
e. 15 mentioned Sleep/Rest
f. 10 mentioned Meditation/Breathing/Relaxation techniques
g. 10 mentioned Doing nothing/Enduring
h. 4 mentioned Diet
i. 2 mentioned Socialising/Spending time with Family
The total number of answers is higher than the number of informants due to
most informants mentioning more than one coping strategy.
4) Does playing video games help to alleviate the pain you experience from your
autoimmune disorder(s)?
a. 67.9% (53) Sometimes
b. 32.1% (25) Yes
c. 0% (0) No.
5) Please describe the ways in which playing video games helps you to cope with your
autoimmune disorder(s). For example, what effect does it have on your physical
and/or psychological symptoms?
(These were written responses to an open-ended question. The responses were of
varying lengths, and as I read through them all, I made notes of the words and
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themes that came up repeatedly, so that I could neatly represent the key words the
informants were using.)
a) 45 mentions of Distraction, Takes my mind off the pain, Lets me think of
something else.
b) 24 mentions of Focus on pain/game/something else, Concentrate on
pain/game/something else.
c) 15 mentions of Escape pain, Forget pain, Ignore pain.
d) 11 mentions of Relaxes, Soothes, Relieves stress.
e) 6 mentions of Removes/Relieves Worry, Anxiety, Depression.
f) 4 mentions of Social aspects.
There were some specific answers to the final question that I felt I could strongly relate
to, and that matches my theory about video games as pain relief. They have been included below,
edited only for conciseness and clarity.
‘Video games engage my mind, thus drawing away my awareness of pain. […] Focusing
on games relaxes me because it slows my mind down from useless fretting about how my
autoimmune diseases have robbed me of my once active life.’
‘It allows me to transport my mind somewhere else and not think about my body for
however brief a time. Makes me feel more powerful. However, when pain breaks through that
video game world, it's always pretty severe [...]’
‘Mental distraction, social interaction […], feeling of mobility. Very much helps me rest
without feeling like I am stuck in one room and isolated. The mental challenge of difficult games
helps take my mind off the pain. When the effort of holding up even a book is too much, I can sit
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in my ergonomic chair and use ergonomic devices to be on my computer playing video games. I
am treated like a normal person since they can't see me. Player since 2004, so 12 years.’
‘I play World of Warcraft. I can get so caught up in the game that I forget all about
anything else. It has been my strongest coping mechanism.’
3.3) CONCLUSION
As a chronically ill person, you might have pain in your body at all times, but you only
suffer from it when you are experiencing it consciously, when it is at the forefront of your mind.
If we can occupy our brains so totally, or focus our attention on something so entirely, that there
is no room for the pain in our consciousness, we no longer experience that pain as keenly as
before. The results of my survey indicate that I am not alone in finding video games effective as
pain relief, on the contrary, my survey shows that 100% of my informants do find video games
effective in alleviating pain. The only difference is how often the informants find it helpful.
67.9% found video games helpful in alleviating the pain caused by their autoimmune disorder
only Sometimes, as opposed to finding it helpful all the time like the 32.1% who answered Yes
to the question do. Originally, there were 12 responses for No, however, when reading their
submissions I discovered that all of the informants who answered No admitted to not playing
games at all, and thus were not able to answer the question of whether video games alleviates
pain for them.
I am happy that all my research points to my thesis being valid. Video games DO
alleviate chronic pain. However I feel that more research should be dedicated to understanding
video games as therapeutic experiences so that we can continue to create video games that
promote well-being, healing and happiness in autoimmune chronic pain sufferers.
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