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What I have learnt from working with
people in pain, in groups and individually
In my early days as a rehabilitation consultant I began to see the potential
benefits of setting up a group program for the people I was seeing. Other consultants
referred their clients to the group to create groups of 8-10 people. Looking
back I can see lots of good intentions but many obstacles to achieving a successful
outcome. Many of these obstacles remain, but, as the program has evolved, it
has become more effective. In those early days I thought I could offer new
skills and options for pain relief and that participants would automatically
use them. I am much wiser today. There are many steps involved in someone being
ready and willing to make the necessary changes to find their path out of pain.
Much of my learning over the last 15 years has been discovering ways to prepare
people to do the necessary work, and then help them learn to motivate and organize
themselves to carry out a self-management program. I learnt that teaching the
skills was the easy part compared to assisting people to keep practising what
they had been taught.
Physical Explanations and Solutions
I noticed early in my days as a rehabilitation consultant that many people
who came to see me were only interested in physical explanations and solutions
to their pain problem, what I have come to call physical fixation.
Suggesting a more wholistic approach was not received well, particularly when
I suggested
that they would need to do the work because no one could fix it for them. I
jumped many steps in telling them this and raised their defences. For someone
with a physical fixation there are many preparatory steps to beginning the
work of self-management. I continue to be surprised how long many people in
pain will search for a definitive physical diagnosis and cure. They will visit
multitudes of specialist doctors and health care practitioners in the hope
that someone will have the answer. The
desire to be fixed is strong in our society. Letting
go of this desire and owning the problem, has
to be the first step in recovery. The self-management or self-healing approach
represents a
major paradigm shift for most people. Over the years I have come to accept
this as a given myself but have to remind myself constantly that this approach
is quite new for the people who come to see me. In addition, it is not readily
accepted because of the responsibility involved in healing yourself. Accepting
this responsibility can be a major step for many people.
Chronic Pain as a threat
As I taught the self-management program I became curious
about the difficulty many of the participants seemed to have, both in learning
the concepts and
skills, and being able to use them when they had an increase in their pain
or flare-up. As a teacher, I kept questioning my teaching abilities believing
that the solution must lie in finding a better method for teaching. Intelligent
people did not seem able to access their thinking capacities and I began to
look for the answer in the experience they were having. I came to realize that
pain was the problem. Pain is a threat and we are organized to listen to it
as an alarm signal. This mobilizes our primitive fight and flight response:
our physiology takes over and bypasses our rational mind. The pain becomes
a chronic threat, one which cannot be escaped. I now believe that this drives
much of a person’s reaction to pain. It can explain the difficulty people
have in learning and remembering their pain relief strategies.
Practising Self-Management
I also observed that many of the participants enjoyed
practising the new skills in the group but when I asked them whether they were
using them at home, the
answer was frequently “no”. I responded to this by making tapes
of the relaxation techniques and the exercises. When I asked whether they used
these at home, again the answer was frequently “no”. I also noticed
that the manual I had written was not being read, or read and not remembered.
My next response was to develop a series of weekly homework assignments which
specified which tapes should be practiced and how many times in each week.
In addition, the homework contained reading assignments from the manual, and
questions which helped apply the reading to their situation. Both the level
of commitment to the program and their engagement in it, increased significantly.
Weekly supervision of their homework to explore the obstacles to doing the
program, produced even better outcomes. More recently I changed the word homework
to self-study to avoid the associations with
school.
I mentioned preparation for the program earlier in this section and this involves
exploring a person’s willingness and motivation to change. This process
cannot be hurried: if it is, inevitably the outcome is poor. The next development
was to ask potential participants to sign a set of agreements, and lack of
willingness to do this often indicated that they were not ready for the group
program. Sometimes we made this the focus of our work, exploring the reasons
they found it difficult to sign and this often enabled them to sign the agreements.
Offering these agreements becomes a way for participants to make the choice
and not feel rejected by me saying that they were not ready for the program.
Linking body and mind
Something else which became apparent over the years was the link between different
parts of the program. For example, slow movement was a way of relaxing, and
the attitude a participant brought to their exercise program determined whether
they aggravated their condition or learnt to work with it. Fear of damage was
often the principle barrier to doing exercise. In other words, physical and
psychological approaches could not be separated. The accepted approach to managing
chronic pain was the multi-disciplinary pain clinic which provided, and still
does, access to a range of disciplines such as physiotherapy, psychology, occupational
therapy and social work. As I developed my program I realized that dividing
the person up amongst different therapists made it difficult for them to experience
themselves as whole. The physiotherapist really needed the psychologist in
the gym or hydrotherapy pool, and the psychologist needed the physiotherapist
in their office to help explore the barriers to exercising, relaxing, and being
active. Barriers could be physical and psychological. I was in the fortunate
position of having my training as physiotherapist and psychologist and was
able to move between the two and then really cease to differentiate between
them. My more recent training in Hakomi Integrative Psychology has been another
way of integrating body and mind. You can read about this in the psychotherapy
section of the website.
The System
Many of the people I see have compensation claims and these tend to complicate
the recovery process. The system requires the injured worker to keep proving
their pain and disability. This is hardly compatible with participating whole-heartedly
in a program for recovery. If full recovery could be guaranteed, then participants
may take the risk of moving out of pain. But, when no guarantees of this kind
can be made, the injured worker lives with one foot in the camp of remaining
unfit for full duties at work and the other foot in the camp of recovery. Their
commitment to recovery cannot be complete. Even when the person in pain does
not have a compensation claim, their motives can be mixed. If they have experienced
pain for a long time it can be difficult and frightening to let go of the accompanying
lifestyle and take the risk of finding a new one.
Working within the compensation system has also taught me the importance
of liaison between treating practitioners and those involved in the return
to
work rehabilitation. I found that, again and again, weeks of work could be
undone by a visit to a practitioner working from a different perspective. The
client could be plunged into confusion, lose their focus on the work they had
been doing, or fail in an attempted return to work because it was inappropriately
designed. Unfortunately clients can play one practitioner off against another,
perhaps in an attempt to retain a sense of control in the situation, but with
the unfortunate consequence of sabotaging their recovery. Good liaison has
not been easy to bring about because it is time consuming and involves building
a trusting relationship with the others involved. There are always many agendas
involved and these may not be apparent at first. Good liaison can be well rewarded;
both client and practitioners being satisfied with the outcome.
Responsibility
I also began to realize that many participants in my groups were not really
taking responsibility for their recovery. They always said that they wanted
to get better but their behaviour did not always reflect this intention. I
began to look at different aspects of the medical and compensation systems
and realized that they were not inviting patients/clients/injured workers to
take responsibility. In one sense, the members of the system seemed to take
charge leaving the person in pain as a victim. They were looking after them,
fixing them, or returning them to work. The concept of sharing responsibility
emerged as an alternative to the more patriarchal approach. I realized that
this needed to start early in the management of workplace injuries and the
onset of pain syndromes not related to work. I continue to speak about this
at conferences, training seminars, and workshops. It seems to be a difficult
message to get across. The system seems firmly entrenched in a different way
of dealing with the problem. Unfortunately, people who fail to recover after
the system has provided for them, are dumped. At this stage they are told to
attend to the problem themselves. How different it could be if they had been
encouraged to take responsibility from early after the onset of pain.
Acknowledging the person’s experience
Individual therapy has taught me the importance of
really acknowledging the person’s experience. It can be easy when you
have seen many people with chronic pain to jump too quickly to suggesting a
way out, assuming that this
is what they want. They first need to feel that you have heard them and understood
their experience. I have learnt that acknowledgement has
to precede any intervention or teaching. Unless you have the co-operation of
the unconscious mind, the
person will appear to sabotage your efforts to help.
Self-management as a last resort
As I have taken histories over the years I began to
see the same patterns emerging. Clients would come to see me when all other
avenues had been explored; I was
the last resort. I continue to be curious about the reasons for this. Most
doctors seemed to opt for physical treatment first, and if this didn’t
work, then they were sent to me. Many people arrived reluctantly believing
that a trip to the psychologist meant that it was in their head. Perhaps the
doctors believed this also.
People were referred to me for pain management and this suggested that their
pain was there to stay. I changed to the term Self-management to avoid the
inference that the pain was permanent and they would have to “learn to
live with it”. I also believe that this is what I am teaching in my programs.
When we work directly with the pain it is to help the person change their relationship
to it, not to manage it. As they learn to change their relationship to it,
the pain becomes less bothersome and, in time, can diminish. I became ambitious
enough to suggest to clients that their pain syndrome was potentially reversible.
The reversibility depended on them and their willingness to change and do the
work of self-management.
Can treatment be damaging?
As they told their stories I heard about the multitude of doctors and other
practitioners they had seen. One client told me that she had seen 9 physiotherapists.
Another client had attended physiotherapy 2 or 3 times weekly for 8 years.
Extended treatment and exploration of multitudes of therapeutic approaches
tends to be the rule and not the exception. I now view this as an integral
part of the problem. People in pain become dependent on their therapies and
therapists and continue treatment independent of the effectiveness of the approach.
I now question whether these treatment approaches actually damage the person
in pain. Certainly the psychological dependence mitigates against employment
of self-management strategies, but what does twice weekly mobilization of the
spine, passive stretching to and beyond the point of pain, and manipulation
of the spine do to the person and their pain system?
In saying this I am not pointing the finger at one group of practitioners but
highlighting the need for all of us working with people in pain, to question
what we do. Unwittingly family members, friends, colleagues and employers may
hinder recovery. Family members may be too protective and helpful, friends
and colleagues may fail to understand, and an employer may design an inappropriate
return to work program. Practitioners frequently continue to do what they are
trained to do and not necessarily provide what the person in pain needs.
Chronic pain and acute pain
Perhaps the greatest misunderstanding in the field
of chronic pain is not recognizing that chronic pain is different to acute
pain. I have noticed that practitioners
continued to search for causes and refer to the injury years after it had taken
place. Chronic pain is a much more complex phenomenon than acute pain. Once
pain has become chronic there are changes in the pain system and pain messages
being sent to the brain don’t reflect on-going tissue damage or pathology.
Unfortunately many practitioners and people in pain continue to operate as
though it were acute pain seeking the cause in tissue damage and pathology.
We refer to the threshold of the pain system being lowered and say that there
is pain sensitization present, whether localized
or more generalized throughout the body.
I found that many people I saw were reluctant to accept this explanation for
their pain and were still looking for bulging discs and attributing pain in
large areas of their body to a small bulge at one level in their spine which
is anatomically impossible. I was also amazed by the number of painful procedures
they would undergo in a bid to deal with the problem from a physical perspective.
Pain as the problem
I became more and more convinced that pain was the
problem or more specifically the person’s reaction to it. I compared the people who were coming to
see me with people who had crippling rheumatoid arthritis and other painful
diseases. Many people suffering from very painful diseases managed to carryout
full-time jobs and conduct remarkably normal lives. I kept asking myself what
was different between these two groups. I believe there are many differences
but the one I want to mention here is the person’s reaction to the pain
and the meaning it has. The alarm created by the on-going pain amplifies the
pain experience and generates suffering of many kinds. The person’s reaction
to the pain can actually create the pain sensitization state,
hence the most important part of the work I do is to help the person turn their
automatic
reaction into a response or something that they consciously choose. You can
read more about this in the articles “Fibromyalgia:
common cause of chronic pain”, “Understanding Fibromyalgia”,
and “Fibromyalgia
Syndrome”.
Acknowledgement rather than sympathy
A common complaint from people in pain was that no one listened to them and
no one understood what they were going through. Perhaps one of the reasons
that they continued treatments, which were not providing a cure, was to have
the support of the practitioner in their battle against the system. They seemed
to need to prove their pain and disability because they said that no-one believed
them. The appropriate response to this is acknowledgement of their experience
but this is quite different to sympathy. I noticed that many of the practitioners
they continued to attend were providing sympathy not acknowledgement.
Early Education
It is rarely, if ever that I see someone who has been
encouraged to take responsibility for his or her own management. Once liability
has been accepted the system
takes over, sending the person to see many specialists but not educating them
in self-management practices. This also happens when there are no compensation
issues. I believe that good education is the missing piece in the management
of pain syndromes. This is the principal reason for writing this book. Rather
than waiting until all traditional approaches have failed, and then seeking
pain management, a person in pain could be given the option of learning self-management
techniques early after an injury or onset of pain. Alert practitioners could
identify people at risk of developing chronic pain and refer them to this program
or other similar approaches available locally. I see education as the solution
rather than more sophisticated diagnostic procedures and interventions. Prevention
is a great deal easier than cure. It can reduce suffering and costs. Why isn’t
early education provided? The answer is probably complex and a subject for
another book. We hope that this website can provide the option of early education
and assist with treatment choices which will lead to finding a path out of
pain.
The downward spiral into chronic pain
As I have included my story in “about”, I will be brief here. What
I discovered first was that my condition deteriorated as the weeks went by.
Healing did not happen and I found this alarming, as the model I was used to,
was gradual recovery following injury. I returned to the neurosurgeon who believed
in the principal of immobilization for pain and recommended that I should wear
a hard collar until the pain subsided. This was my second lesson; immobilization
does not solve the problem of chronic pain and possibly contributes to its
development. I soon learnt that no one could diagnose or explain this pain
to me and did not offer any effective treatment. This was the beginning of
months of anxiety about the cause of the pain, and depression about the lack
of progress. Medicine and the allied medical disciplines did not provide the
answer. There was no single cause or simple cure. This contrasted with my previous
experience of successful surgery for what turned out to be a prolapsed disc
and not a tumour. This had been a traumatic experience as I had been told that
I would be a quadriplegic if I didn’t have the surgery and that there
was some risk of this occurring in the surgery. The relief that came with the
successful surgery and knowledge that I didn’t have a tumour, meant that
I could better handle the post-operative pain and convalescence. The episode
was dramatic but had an early resolution.
Healing
The most important learning from my experience of chronic pain was that the
health professionals could not fix me. The healing had to come from me. There
were health professionals who supported me and helped me find my path out of
pain but I had to do the work. I was in unfamiliar territory and I had no map.
One of the significant turning points was discovering that I needed to believe
in my capacity to recover and handle the uncertainty of not knowing how this
would happen, and when. I began to feel a conviction that it was possible even
though there were still times of doubt.
In my training as a physiotherapist the word healing was
not really used, and this experience of chronic pain opened a door to a new
way of perceiving health
and recovery from ill health. Harnessing my healing potential, or awakening
the healer within me, was the key to recovery.
This was very different to what I had learnt in my physiotherapy training.
The medical model tends to see the practitioner as the powerful one offering
the magic bullets, which cure the illness. In a sense it disempowers the patient.
My training tended to be reductionistic, looking for solutions by looking at
parts not wholes. My whole life had been affected by the experience of chronic
pain and attending to the pain in my neck with massage or mobilization did
little to take me out of pain. Massage gave me temporary relief but did not
restore my life. I came to see this as a need to focus on the person in pain,
rather than pain in the person. Many of the practitioners I saw were not able
to do this, and indeed their training did not give them the skills to do it.
Returning to work
There was another significant turning point in my recovery and this was my
return to work. I had been studying for many years and worked part-time only
and not at all while I had chronic pain. I was not a good risk for a potential
employer. In spite of this I found a job, and one in an area of great interest
to me. When I became a rehabilitation consultant in the WorkCover system I
felt that I had found direction and meaning again. Feeling useful helped restore
my damaged self-esteem. Although the pain increased a great deal, particularly
in the early weeks of this return to work, I could handle it because I felt
good about myself and sensed that I was going somewhere in life. On reflection,
returning to work was an integral part of my recovery rather than something
I returned to when I was pain free.
No cures
I found it challenging to accept that no one had a cure, and to go on this
journey in unfamiliar territory without a map. I learnt a great deal about
myself and discovered a whole new way of looking at illness and recovery. For
this I am grateful even though it was tough at the time. What seemed to be
a catastrophe became an opportunity to change myself and my career. All the
threads of my life seemed to come together in my new occupation and way of
living. The apparently disparate studies have all served their purpose.
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Chronic pain is
a biopsychosocial problem, which can only be
addressed by taking a wholistic approach; treating the
person
in pain, not pain in the
person. A biopsychosocial problem simply means that the biological or physical,
psychological and social aspects all need to be addressed.
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Pain or
pain sensitization is the problem more than structural changes, tissue
damage or
pathology. Even when degenerative changes are present
or an injury has taken place, they
cannot adequately explain the chronic pain that develops.
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The management
of workplace injuries and non-specific musculoskeletal pain can become
part of the problem and even keep a person in pain long after
the injury should have healed or the pain settled. The
system can become an integral part of the cause of the pain. Advice given to the person, diagnoses
made, treatment
given, and long medico-legal battles can all play a part in the development
and maintenance of a chronic pain syndrome.
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Approaches to management generally
focus on removing or alleviating the pain. This is not surprising
given that most people find pain an unpleasant
experience. It is worth remembering that pain is a universal experience
but high levels of
suffering do not have to accompany it. Pain is
universal but suffering
need not be.
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The term self-management
is preferable to pain management because the latter term tends to suggest that the pain is permanent.
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Self-management
requires education in techniques for pain relief and
an explanation for the pain. If the person’s fear of the pain
and concern about the cause of it can be addressed early, development
of
a chronic pain
syndrome may be avoided.
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An Integrated
approach is preferable to a Multi-disciplinary one. This allows the person in pain to feel whole and not divided
into parts
which different practitioners treat.
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The person in
pain needs to believe in reversibility of the condition. Many people with chronic
pain have been told that they have to
learn to live with it and their experience reinforces this. Developing a belief
in reversibility
becomes an essential part of the work.
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Liaison between
treating practitioners and rehabilitation consultants is
essential.
Working in isolation is rarely effective because the system
can
defeat any practitioner’s attempts to help the person
recover.
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Sharing
responsibility between the person
in pain, practitioners, the employer, and the insurance company
allows
the person in pain
to become a self-manager and not a victim.
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The path out of chronic pain is not
easy and requires commitment to a
self-management approach and willingness to be honest about
motives and behaviours that help maintain the pain. This takes courage and commitment
from
the person
in pain. Support and encouragement from practitioners, the
employer,
colleagues, family and friends can assist the person when they lose
heart. Those who
are prepared to make the journey are well rewarded.
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