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Rosemary’s reflections

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.

What I have learnt from listening to people in pain

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.

What I learnt as a person with chronic 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.

Conclusions I have reached through these experiences

  • 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.
  • 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.
  • 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.
  • 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.
  • The term self-management is preferable to pain management because the latter term tends to suggest that the pain is permanent.
  • 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.
  • 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.
  • 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.
  • 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.
  • 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.
  • 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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