Feature
What is the Meaning of Pain?
Interview with Dr Dawn Macintyre
Chronic Pain Behaviourist, Clinical Counsellor,
Professional Supervisor MACA Level 4
A neural response to internal or external stimuli, pain is understood as the body’s signal to the brain that danger is present — a hot pan, a sharp knife, a shard of glass where it shouldn’t be.
But for one in five Australians aged over 45 (with women and the elderly the most likely to suffer from it), an ongoing and sometimes debilitating experience of such sensations is the norm — chronic pain.
Living with chronic pain since she was 10 days old, Dr Dawn Macintyre is a British-Australian clinical counsellor, educator and author whose work encompasses what best-practice mental health counselling and holistic care can mean for practitioners working with clients with similar health issues.
Her life and career has been marked by the contours of chronic pain; childhood health issues compounded by an accident at age 14 has meant years of treatment, dozens of surgeries over decades and multiple hospital admissions throughout sometimes debilitating pain.
“We're talking about the loss of my life, how I saw it,” she says.
“But not just mine, my husband's, and how I connected with my friends and my family, and my options, my possibilities. It all changed dramatically, and I don't use the word dramatically lightly.”
An earlier career spent working in research and policy around stigmatised child deaths, Dr Macintyre found the experience of grief and loss held parallels to those living with chronic pain, as well as the ever-present stigma of “appearing” fine to those around you.
In a 30-year career as a counsellor, she has worked to develop training for counsellors and allied health practitioners to better understand, advocate for and work with clients living with chronic pain.
Language matters
The importance of language when talking about chronic pain cannot be overstated, Dr Macintyre says.
Balancing an understanding of communicating what’s important to a client must be weighted with a knowledge of how statements can trigger a fear of pain response within the nervous system — and what that can unleash.
“If we use a language that invokes a ‘danger in me’ signal, our danger signal in our body flares up, our sympathetic and parasympathetic nervous system get out of kilter, and we start to stress,” she says.
As a clinical patient, Dr Macintyre knows this all too well.
At 32 years of age, a specialist told her she would be wheelchair-bound within eight years, setting off a series of protective signals within her brain that responded to her fear of such an outcome.
“I mean, it's very stressful to be told you're going to be in a wheelchair by the time you're 40. And with that stress you get, your body gives a danger signal.”
“So my brain then gave this pain message, and I had increased pain after he had said that,” Dr Macintyre explains, adding that the more pain a person has, the more confused neural signals can become as they work overtime to protect the brain, often in situations where it works against itself.
She says if the specialist had instead used a communication mode that focused on building rapport, offering solutions and working collaboratively, she would not have had such a stress response and accompanying pain.
“Language really has a neural pathway, and we have to really be careful of that.”
“So as counsellors particularly, it is so very important that we choose our language so we don't elevate people's stress, and that's irrespective of whether we are talking about pain, grief, or relationships,” she says.
“You don't necessarily have to talk about pain,” she notes, “You need to know about how to help mitigate someone's fear.”
Building a relationship with pain
A long-term diagnosis of pain — for chronic sufferers, this is defined as daily pain lasting over three months — is a challenge for both clients and counsellors in working to understand what a life looks like beyond the immediate limitations it can present.
Acceptance and Commitment Therapy and Cognitive Behavioural Therapy are both modalities Dr Macintyre cites as being key aids in helping clients to develop a relationship with their pain.
This for her, came in the form of actively participating in what was and is a constant consideration in her life and relationships.
“I do have a relationship with my pain, because you have to have a symbiotic relationship. We have to live together,” she says.
“It was about accepting this is how it is, not accepting I was always going to be debilitated, but accepting that I needed to learn to take control of my pain, rather than it control me, and being ready to do that.”
“And so as a counselor, if you're working with someone, the most important thing is to believe and to validate and help them with the aspects that they can manage and just a tiny bit at a time,” she says.
Her book, Living with chronic pain: From OK to despair and finding my way back again, is a memoir of insight into how her life was radically shaped by her condition, and how she managed to overcome suicidal ideation after years of being bed-bound because of her pain.
“I got to a point where I didn't want to stay in this world anymore, [I] didn't want to live the way I was living,” she says.
“Because it was so exhausting, so stigmatising, so burdensome to so many other people, so isolating, and for someone … to suddenly be confined to hospital or [a] bedroom was pretty dramatic.”
“So then I realised that the link to grief or loss and pain was significant, really significant.”
Stigma and perception
An awareness of the stigma associated with the condition is also critical to communicating and living alongside anyone with chronic pain, which can be a very isolating experience.
“There is absolutely nothing more frustrating than someone saying to you, ‘Have you tried this? Or have you tried that?’” Dr Macintyre says with a face of mild anger.
“Because when you are in chronic pain, you think: ‘You have no idea what I've tried.’”
Dr Macintyre cites flare ups in her experience that can happen instantaneously, turning a regular outing into agony.
“A lot of people think, Well, you seem fine, you don't have chronic pain. What's your problem?”
“Whereas I can go for a walk and I can be fine … [and minutes later] I have agony in my hip and leg.”
This is also true for people who may go through extensive medical testing and not find a direct cause of their pain, she says, but still have to deal with the agony and trauma of the medical field “not being able to see anything wrong” with them.
Validation and acceptance
Counsellors and clients may feel the pressure to work towards a life “beyond pain”, but Dr Macintyre stresses the most important approach is to validate how someone feels in that moment.
Relaxation techniques, a review of sleep hygiene, exercise routines, a diet of non-inflammatory foods as well as considering primary relationships and connections to community are all key aspects of managing chronic pain and regulating the nervous system, she says.
“They're absolutely important for the counselor to help the person understand that their experience is normal and they may be feeling depressed, out of control, isolated, they may be fearful, they may be frustrated, they may have brain fog, all of those things.”
“But they can have some control over their situation once they get their nervous system a little bit more balanced.
“But the most important thing is that we sit and we validate it, and that we know that any kind of stress can actually elevate chronic pain.
“So there are so many layers to working with someone with pain, you don't go straight in on the pain as really the answer,” Dr Macintyre explains.
Psychosocial impacts such as relationship breakdowns, related health issues such as diabetes or cancer, the emotional, spiritual and cultural effects of chronic pain; all are key factors and insights into how someone is dealing with their pain, and crucial for counsellors to cover.
“The starting point is not the pain, the starting point is the impact on the person’s life,” she says.
Even down to the everyday things: always ask if the person has a pet, she says, because the “therapeutic quality of a pet cannot be overestimated”.
Communicating through pain
The basics of speaking up when in pain has become “one of the most powerful things that I’ve learned in this process”, Dr Macintyre says.
“And this is much up to the person living with chronic pain to communicate the needs, as it is for the other people in the household or in the circle, to communicate their frustrations [or other issues], because if you don't speak about it, it becomes more and more isolating.”
Any sort of build-up of anger or anxiety directly influences stress levels, and that can lead to more pain, she says.
But for most, still being able to participate in the everyday minutiae of life is paramount to feeling like their chronic pain does not rule their lives.
She cites examples of needing her husband to leave a simple task like hanging the washing out to her, despite the difficulty in performing the movements, because it enables her to feel “not totally incapable” and instead able to contribute to their life together.
“He wanted to do it because he was being lovely to me. It actually was driving me flipping mad,” she says with a smile.
“It’s a very tricky balancing act.”
She cites examples of how pain throughout her body makes it difficult to engage in touch with others at times, such as hugging her partner, and that communicating this for others with chronic pain is essential to maintaining a relationship.
“You can see how relationships can be quite challenged if they don't understand and if you don't communicate,” she says, and stresses how vulnerable it is to be in pain.
A guide for counsellors
Dr Macintyre’s work has extended into creating training for other counsellors and health professionals to better approach and work with clients experiencing chronic pain.
She has developed a training program available through the Australian Counselling Association’s website that offers professional development to support professionals and loved ones navigating a client’s chronic pain.
“Our job is not to try and work out what kind of pain the client has,” she says.
“For our work as counsellors, what we need to do is help build that person's sense of self again, because you lose it.”
The guide amasses decades worth of lived experience as well as professional knowledge in the field of chronic pain, and is aimed at the broader healthcare community — physios, counsellors, allied health and others that treat clients dealing with such pain.
The irony, Dr Macintyre says, is that it’s taken her 10 years to have the energy to write it.
But in the end, it is about increments, she says, referencing pacing according to one’s capacity and needs.
She cites the influential book Atomic Habits by James Clear as an example of an approach that uses one per cent increments to change a life.
“That's so important with chronic pain, is just to do little bits.”
“Build up little bit by little bit, and help your client become confident,” and in doing so, take back control of their life, she says.
Biography
Identifying and meeting gaps in Public Health issues is my passion and the centre of my professional work.
I trained in Education and Psychology at London University and completed my Masters in Public Health at Curtin University, WA. Twenty-five years later, I decided it was time to complete the cycle, and due to my work with families who had tragically experienced the death of a child, I gained my PhD at UQ in 2014. The main challenge was making sure those families I interviewed had their voices heard, and that I was honoured to be trusted with the task of making that happen and identifying the gaps and supports through their terrible ordeals. I am now one of just a handful of professionals across Australia who specialise in supporting families who have experienced unexpected loss, confusion, and at times stigma associated with their grief.