A Path to Living Well With Chronic Pain
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Pain is a difficult concept to understand, and those suffering from pain will tell you it can be just as hard to treat.
But does somebody have to be free from pain to live a good life?
The content in this blog comes from my interpretation of the PhD thesis of Bronnie Lennox Thompson , an Occupational Therapist, pain researcher, and postgraduate lecturer in pain. Bronnie also lives with her own painful condition: fibromyalgia.
The thesis outlines a model for living well with chronic pain. It’s absolutely fascinating, and I’d argue one of the most important things to read for any healthcare provider who works with people in pain. For those in pain as well, the information can be absolutely game-changing. I’ve had many patients respond to the themes in this model and start taking positive steps towards managing their chronic pain and getting their life back.
I won’t be able to do a nearly 400 page thesis (let alone one this good) justice in one article.
But, I’ll give it a go!
The purpose of this article is to introduce you to Bronnie and her work, and share some more information about the diagram above that outlines a model for living well with pain, in the hope that it will give you a path forward to begin managing your pain.
It may not all make sense on face value, but here’s the model and cliff notes.
When someone is in pain it presents a threat to their identity. It challenges who they are and what they believe they can do, and creates a sense of uncertainty about the future. Bronnie’s theory, therefore, places achieving self-coherence (being and knowing the person you think you are) as the top priority for those living with pain.
Achieving self-coherence is achieved by “re-occupying the self” — by making sense of the situation, deciding to get on with life, and flexibly persisting, in order to allow you to be yourself and do the things that give you value and meaning.
The first step, sense-making (left of the model), involves 3 processes:
Achieving diagnostic clarity, which is achieved when medical information from the healthcare provider(s) matches with an individual’s personal experience.
Symptom understanding, where people in pain develop an awareness of the characteristics of their symptoms to allow them to understand boundaries and expectations that are relevant to their condition.
Occupational existing, in which the activities and behaviours that a person undertakes are reduced initially in order to review their effects on symptoms, but to allow the person to maintain some sense of self by doing some things they would usually do.
These three processes can be iterative, and may not be experienced in a specific sequence depending on your own journey. Over time, by working through these processes you may begin to develop a more coherent concept of yourself with you pain, adjust expectations, and proceed to the next stage — deciding.
Deciding (centre of the model) acts as a turning point, where the person experiencing pain choses to move forward with their life
By weighing up
The effort required to “get back to normal”.
The rewards from engaging in life and occupations even if your symptoms persist (side note: occupation may involve “work”, but here is is used to mean the definition “a way of spending time” which encompasses the activities undertaken in day-to-day life).
Acceptance of the self as it is now, including the way pain fluctuates and influences your life. This may be subject to change if new symptoms or information emerge, requiring revision of the sense-making process.
The model’s focus is to enable you to “get on with life as it is now, rather than an attempt to recreate your past self”.
This is the decision that is crucial to the process of getting back into life.
A Note on the Role of Clinicians in this Process
This decision may also include influence from a clinician.
The relationship with your treating practitioners can be
positive, where a trustworthy clinician assists you on your journey by assisting you to make sense of your condition, encouraging you to make your own decisions, being supportive and providing you with individualised care.
or
negative, where a clinician (although usually well meaning) may impede your ability to decide and move on by tipping you away from deciding and back towards an ongoing cycle of sense making without resolution. For example, by encouraging unnecessary investigations or recommending unhelpful treatments. And then, unfortunately, having found no answers, telling you “there is nothing they can find that should be causing your pain” or “you’ll just have to live with this” and offer no further options for follow up or support, leaving you lost and no closer to making sense of your condition.
Once the decision to move forward has been made, it is time to progress to living and persisting flexibly.
Flexible persistence (right of the model) is the second phase of re-occupying the self
The stage of persisting flexibly involves remaining committed to the desired outcomes your life, and ensuring their achievement even if it means doing things differently.
In this second stage, having now decided to move on, you undergo three processes
Occupational Engaging, doing the things day to day that re-enforce self-identity. In plain language: doing things that you want to do, that are important to you, and that contribute to who you are and your place in the world.
Coping, by using strategies and methods that allow for continued occupational engaging. This could include cognitive strategies, mindfulness techniques, relaxation, activity management, pain-relief modalities, medications or even assistive equipment.
Future Planning, which is only possible when the world and your place in it is understood, allowing you to have positive expectations and be motivated to continue living a meaningful life.
This is the part where things pay off. By having a life that is more meaningful and engaging, you recover your sense of self and can live on your terms: not the terms your pain sets for you.
Persisting flexibly is going for a walk despite the rain.
Take an umbrella if you need it, but still go.
To quote Bronnie’s thesis and summarise the relevance of flexible persistence in re-occupying the self:
“the main concern of people experiencing chronic pain is to find a way to return their world to something that is understandable, meaningful and manageable, and to feel that they fit and can contribute positively. Although individuals may not recognise that they are re-occupying self during this process, in effect, this is what they achieve once they are flexibly persisting. Reoccupying self involves gathering information and skills, examining what is and is not important, applying knowledge and skills until the new self-concept feels comfortable.”
The model outlined above is a valuable tool in assisting people to live well with pain. In my work, no other concept has provided as many beneficial interactions as this model has, and I could not recommend Bronnie’s work highly enough.
If you are a person experiencing pain, you may want to hear more about Bronnie on this podcast:
https://integrativepainscienceinstitute.com/latest_podcast/how-to-live-life-well-with-pain-and-do-what-you-love-with-bronnie-lennox-thompson/
or see her blog:
https://healthskills.wordpress.com/if-you-have-chronic-pain/
And for practitioners, or those with the interest, Bronnie’s thesis can be found at:
https://ir.canterbury.ac.nz/server/api/core/bitstreams/1cf2d2c2-baf7-4964-825c-4907cc9dcca0/content
Don’t let pain hold you back.