PELVIC PAIN Q&A SERIES
In this edition of the Pelvic Pain Q&A series I am delighted to bring you Laura Rathbone talking about Acceptance and Commitment Therapy in the treatment of pelvic pain. Laura is a clinical specialist physiotherapist working in the field of persistent and complex pain and lives near Amsterdam, the Netherlands. She gained her MSc in Advanced Neuromusculoskeletal Physiotherapy from Kings College London in 2015. Here she was heavily influenced by the teaching of Prof Mick Thacker who introduced her to the wider philosophical discussion around human experience and pain.
She has held multiple Physiotherapy roles in London within 1st and 3rd contact environments working in clinics, GP practices, hospitals and a specialist programme. She worked as part of the multi-disciplinary team delivering the INPUT Pain Management programme at St Thomas’ Hospital under the management of Prof. Lance McCracken. Here she gained an in-depth working model of ACT and became skilled in session development for groups and individual work.
Laura is dedicated to the understanding and exploration of the science of pain. She co-hosts Le Pub Scientifique in Amsterdam and guest lectures on the topic of pain and incorporating psychological frameworks into practice. She also hosts the podcast Philosophers chatting with Clinicians which provides a creative space for exploration and collaboration between these two fields.
She is currently interested in the ‘how’ and ‘why’ people experience pain. She is exploring the philosophical discussions around conscious experience and how humans interact with their environment. She is particularly keen to explore how these models feed into the development of a modern, person-centred health care service.
If you would like to know more about Laura visit www.laurarathbone.com or find her on Twitter/Facebook. You can also send her an email at rathbone.l.e@gmail.com
Can you briefly describe what Acceptance and Commitment Therapy (ACT) stands for and why ACT can form a central role in recovery from pelvic pain?
Acceptance and commitment therapy (ACT) is a modern generation of traditional CBT, often referred to as 3rd-wave CBT. There are others 3rd-wave models such as Compassion Focused Therapy (CFT) Mindfulness-based Therapy and more. The strand that seems to connect them is that the focus of therapy has taken a shift away from focusing on the symptom, to broadening out the focus towards living a valued-based life alongside the symptom.
Acceptance in this context could be thought of as the acknowledgement of the current situation fully and openly. Contacting the here-and-nowness of an experience noticing the judgements, thoughts and compulsive behaviours that can come with them as well as the physical sensations within your body. A good example of this might noticing that you have a headache. In this situation, the pain can be incredibly invasive and really impact the ease with which you move about your day, to say the least. So this headache might come with thoughts like: “I can’t go outside” or “the pain is too much for me” and emotions like anger, frustration or fear, and then actions like; cancelling appointments with friends, staying in bed, taking medications.
So acceptance is the action of acknowledging these processes and that they are ‘your’ processes, that is, they are a part of our conscious narrative that generally guides our life and actions un-seen. What we want to do here with an ACT approach, is to take the un-seen and see them. Being able to label them as thought, emotions, actions, sensations or whatever labels work best for each individual can open out a very compressed experience.
The hope is, that by opening out the aspects of a pain experience we also open the opportunity and possibility for choices and other ways of being with it.
This is where ‘commitment’ comes in to play. Within this context, as I understand it, acquiring and nurturing the skill of commitment requires us to get the very heart of what we value and believe in. What we really want out of our life.
So taking the headache example, it may be that you are having a headache on the morning of an important day like a birthday, or a family event, or a big presentation at work. In this moment it can often feel like there is no choice, that you must do what the pain tells you to do. This might mean stepping away or back from important things in life. For example, cancelling appointments with friends, avoiding delivering a presentation or withdrawing completely to our bed. This might be ok if it is just once, but if this is a repeated for months or years, people can often find that they are living a life outside of their values, no longer part of their community, family or doing things that they enjoy.
So, in these situations, we would want to try and work out together, how the person would ideally like to respond to these experiences. We would try to create strategies for doing so with the primary aim of helping them to fulfil their goal or action in a way that they can have as much of the joy of doing it as possible. In the case of pain, much like anxiety and depression, or other complex sensory experiences such as persistent itch and body dysmorphia, this joy may be alongside some of the most challenging invasive sensations and thoughts that humans experience. The idea is to build up resilience, develop helpful skills and facilitate an environment that allows for options.
The second part of your question is MUCH harder to approach! The question is:
Why Acceptance and Commitment Therapy (ACT) can form a central role in recovery from pelvic pain?
I’m careful here, because I do not want to imply that Acceptance and Commitment Therapy can help a person recover from any kind of pain directly. ACT is not a cure for pain. I’m not convinced that we have the evidence to make that claim and it’s not how I would interpret the use of ACT. But if your question was:
Can ACT play a supporting role in the treatment and management of persistent pain?
Then I would say that this kind of evidence is emerging. Actually I’d say the implication to incorporate any narrative and values-based talking therapy as an approach – is emerging. What we are seeing is that when we listen to the person in front of us and support them towards the meaningful actions and activities to them, people are able to stay more connected those things and things like disability associated with pain can and does in some cases reduce. This matters when pain and difficult emotional experiences may have created a situation where people feel isolated and alone.
Having persistent pain does not mean that you are no longer able to be part of the fun things happening around you, or that you can’t have dreams, desires, needs and wants outside of treatment and medical care. ACT is an approach that flexibly fits around what you find important in life.
Does Acceptance and Commitment Therapy mean a patient should just accept their pain and put up with it for the rest of their life?
If that works for the person in pain, then maybe. But no, that’s not really the idea as far as I understand it. Here I think we are dealing with the difference between acceptance and resignation. I suppose, for some people reaching a kind of resignation can be a successful coping strategy or may be part of a very difficult but important first step, but I wonder whether it would bring them closer to the life they ‘choose’. A life in-line with their values and goals.
For me, the difference is that acceptance is not about accepting your ‘future fate’ of always having pain, but rather acknowledging and allowing the experience of – this moment – and that within that kaleidoscope of experience, there is pain. Within the model of ACT this is discussed as ‘dropping the struggle’. The struggle here could be in avoiding the pain. Sometimes people can spend much of their waking moments dedicated to avoiding their pain. Understandable and potentially helpful. But it’s when this isn’t helping, when you want to work with your pain differently, that’s when the skills and steps that are built up through ACT-informed therapies could be useful.
Do you feel there may be their links and associations between masculinity, identity and pelvic pain and how could an Acceptance and Commitment Therapy (ACT) approach benefit the patient here?
This is a great question and one I don’t feel really qualified to answer. However, I’m happy to work through my own interpretation and opinion on this.
Toxic masculinity, as I understand the term, deals with the message that boys and men must learn to be strong, tough and dominant within a society that splits people into two genders; female – weak, vulnerable, sensitive etc and male – strong, silent, tough, etc.
Unfortunately, in much of the world, ‘society’ places high value on men that demonstrate the opposite behaviours of those we teach to the girls and women in our shared society. Men that demonstrate the more typically-female behaviours are ridiculed for being weak, which is of course how we see our women, and so they are said to be more ‘like a girl’. Of course this is not just a ‘male-issue’. When girls and women are taught and demonstrate behaviours that maintain their role as ‘the second sex’ or the weaker sex, only there to be admired for beauty, serving husbands and raising children and judging women that don’t conform to this model, we call this ‘internalised mysogyny’.
So we cannot separate toxic masculinity from the internalised mysogyny of the women that share space with men.
From my perspective, the influence that toxic masculinity and internalised mysogyny may have upon a boy or a man’s experience of the world is that they push taboo topics even further away from the social sphere. Women are taught to share with other women and so experiences of trauma or pelvic complaints, although still taboo, have received a lot of social activism as well as clinical and systemic development. However male pelvic pain and genito-urinary symptoms continue to be shrouded in social taboo – because there is this societal norm that ‘real’ men don’t have pain. Especially pain in or near their penis. This means that there are many men out there who feel unable to talk about their pelvic pain and/or functional issues.
So, I suppose, on one level ACT could support people do exactly that: TALK ABOUT pain and genito-urinary issues. If we can’t talk about it, we can’t help. So building up the skill of acknowledging and accepting that it’s there could help us move to appropriate treatment and therapeutic programmes. Not to mention fostering connectedness and compassion.
In another way, talking-based therapies like ACT, may be able to support a boy or man to nurture his own emotional and cognitive skills and use ‘helpful’ strategies and actions when he is struggling with pain. Giving people permission to talk about the full spectrum of experience that comes with pain can be a freeing moment in itself. ACT is one way of creating the space for a person to open up to the multi-dimensional components of having pain in your life and that space can bring all sorts of options and wriggle-room that might not have been available before.
It’s not perfect because, like most things, it isn’t a quick and easy cure. Exploring the different dimensions of yourself and allowing yourself to be vulnerable takes huge bravery. We have to move at a pace you can tolerate whilst also being active and challenging enough for you to feel that we are making a difference. Doing something different is very uncomfortable and should not be directed or forced by the therapist.
Why is holding a space with a patient essential for exploring some of the deep, meaningful aspects of their pain experience and how can this benefit in their recovery?
This question has some jargon within it (holding space) as well as the assumption that a clinician CAN hold space for another person to explore their pain.
These are interesting concepts to me.
‘Holding space’ for me has come to mean facilitating a moment in which the person in pain feels safe enough to share and push out in to unknown territory. A moment within which they know that they will be caught and guided if they need it and that the choice for support is theirs. The thing is, I’m not sure if that’s what the clinician does, or what the person does for themselves.
I often think that my role is to try and remove as much of my presence from the room as the person can tolerate. It’s not about me and what I know or don’t know, its about what you do, and how much you need me to be part of that. My job is to be flexible enough to know when to guide and when to step back. To be able to offer up techniques, skills and activities for you to explore your pain and how it responds so that we can keep collaborating and thinking together about what is helpful and what is not.
I see it a bit like this, I provide the environment (sometimes literally a room) that you can fill up, experiment in, succeed, fail, be silly, be sad but most importantly, push out into and own. When the physical space becomes too small, we go out in to a bigger space.
What are the limitations of a tissue based approach in pelvic pain (prostate, bladder, muscles, genitals, nerves etc) and why should we move towards a humanistic approach for successful outcomes in pelvic pain?
When we talk about tissue-based assessments, we are talking about measuring and observing the body and how it responds to movements, touch, stretch, for example.
The problem here is that tissues are not purely physical things, they are part of a multi-system system that has within it the capacity to increase or reduce its sensitivity, that has memories, that learns how to respond, that has protective behaviours…All this combines in some people to mean that tissues can appear normal but to have abnormal responses. This is the problem with the metaphor that places pain as a warning for bodily damage, like a break or a tear. What if there is no break or tear but there is still pain? If we are only relying on tissues to explain a person’s pain – what do we say when there is no tissue? For example when there is an amputation?
We have to respect and appreciate that pain is a whole-human experience from the moment we open the clinic door and not after we assess them in a traditional physiotherapy way. Everything about our human-ness and our environment is part of the dynamic looping that flows through our un-conscious and conscious mind, through our cognitive self, through our physical being, though our world around us, through our relationships and therefore into our conscious mind. Pain is a problem of consciousness AND a physiologically enacted experience within our embodied self.
A bit like the infinity symbol, it doesn’t start in one place and end in another, its part of the constant looping that guides us through our environment. The problem is when that guiding system perceives that dangerous and threatening experiences are happening to us when they are not. For example, urination would not usually categorised as dangerous and so pain shouldn’t be part of that activity. When it is, we are driven to fix it or avoid it. Finding out ‘why’ pain has become part of that activity often, I would say always, requires us to look not just at what are the tissues doing, but also how have the experiences of the human brought us to a point where essential human activities like urination are painful.
We can’t do that if we are only pulling and jabbing on tender places. Because actually, we are just hurting someone that is already hurting. We can’t separate human experience up in to a biological bit, a psychological bit and sociological bit and see which one is the cause. So we have to keep the puzzle in-tact, step back and take in the whole picture.
Thank you so much for your insight and expertise into Acceptance and Commitment Therapy here Laura. I know many readers will fund this information hugely beneficial – patients and therapists alike.
PELVIC PAIN Q&A SERIES:
Read my interview with Tim Parks, author of Teach us to sit still here
Read my interview with Bert Messelink, vice chairman of the European Association on Urology here
Read my interview with Prostate Cancer specialist nurse, Meg Burgess here
Read my interview with Robert Wells, author of Back, Sack and Crack (& Brain) here
Read my interview with mindfulness instructor Jiva Masheder here
Read my interview with Clinical Psychologist Nick Woods here
Read my interview with Laura Rathbone on Acceptance and Commitment Therapy here