I’ve posted before on the effects of disability that make coping a challenge – today I want to cover a few more areas. My aim is not to suggest a ‘poor me’ attitude towards people with chronic pain, but instead to highlight how these demands might affect core beliefs. This is an important area for clinicians working with people experiencing chronic pain, because sometimes our well-meaning recommendations to, for example, work to quota, try exercising, or use relaxation, can fall flat – not because they’re the wrong recommendations, or the person is ‘not motivated’, but perhaps because the strategies cut across the person’s beliefs and attitudes. By sensitively exploring why a person isn’t keen on adopting a specific approach, we can help them gain awareness of their own process of adapting to their disability, and perhaps gain their trust and help them try a new skill.
A theme throughout the thoughts on disablement is loss of control and loss of acceptance – the two foundations for what in our culture we think make a complete person. To lose control means we are helpless and powerless and have no voice. To lose acceptance means we don’t belong, we are somehow not worthy. And because many of us have never really taken time to check in with our fundamental beliefs about ourselves and the world, when we are challenged with disability, it may rock these assumptions, and provoke distress right in the areas we feel most vulnerable. This is the diathesis-stress model where any area of vulnerability, when stressed, can become symptomatic.
Loss of control
Feeling in control is a really strong part of being human in New Zealand society. We expect each other to be in control emotionally, to control our body functions, to ‘hold it together’ when we are challenged. Tears are just not acceptable in business – and only just in sports!
Some of the effects of pain itself mean that a person feels no longer in control of choices, but what can be more challenging than this is the effect of having to attend appointments, the side effects of medications, trying to be understood in a language that is unnatural (our health care jargon!).
Loss of resources
Practically speaking, people who have restrictions in their ability to carry out activities often also have restrictions around their ability to work – and additional costs associated with mediating both their disability and the medical condition contributing to it. As a result, many people experience material losses in income, interpersonal losses in terms of relationships within the family, workplace, and intrapersonal losses such as loss of self esteem, self efficacy, energy.
Although some of these costs can be offset by central government initiatives (subsidies on medication and health care), or by insurance or compensation (income and treatment costs), many cannot be compensated adequately and some areas not at all.
The roles we carry out form the basis of much of our self image. Even temporary loss of function can mean an alteration in the roles we can carry out. In the short-term, people around us can be quite flexible and make allowances for these changes. Over time, however, and especially when the disability is ‘invisible’ such as with pain, people can become much less comfortable with making these adjustments, and the effect of both external pressure to ‘step up to the mark’ and internal pressure to fulfill expectations, can lead to stress and conflict. Some of these changes can be positive, for example many people do appreciate the opportunity to spend more time with their family when they first stop work, and this can be challenging when change or recovery is evident. Despite this, most people would acknowledge that role losses associated with disability are greater than role gains.
Life, the universe and everything
At some point in our lives, we will directly face our mortality. Some of us will only recognise this a moment before our lives end, but people experiencing chronic pain and disability often feel their own end of life well before it actually ends. While some people are reasonably comfortable with this process, others are very fearful and it’s not a topic that is often discussed openly with someone who is not given a diagnosis that suggests death. Yet people often wonder about the possibility of dying from their disorder – or contemplate suicide as a way to end their suffering. We need to be mindful of this in our clients, whether or not they present as being depressed. We can at the very least acknowledge that at times it does pass through the minds of our clients.
While many occupational therapists and physiotherapists don’t feel confident or comfortable about discussing suicidal thoughts with their clients, it remains an important area to take into account. If need be, seek some further training to develop the ability to discuss this with your client. Even more importantly, consider what your own concerns are around discussing this with your clients. What are your automatic thoughts? What are the underlying beliefs, rules, attitudes that influence your responses? I’ll cover how to assess and respond to suicidality in a separate post.
Doctors, nurses, and other health care providers
If there is one place I really dislike, it’s hospitals and the health care system! And once a person has a diagnosis, and starts to receive health care, they’re enmeshed in a system that is both foreign to many, and almost incomprehensible even to people who work in the area! So it’s no wonder that people can feel frustrated, alienated and powerless, especially when they’re feeling vulnerable about their own body integrity, and are anxious and perhaps overloaded with information.
Part of the problem is that no single person, including the patient, has all the information assembled in one place! It’s almost like a game of whispers. While communication is always heralded as Most Important, it doesn’t seem to happen consistently enough. At the very least we should gain consent from the person to share relevant information, and always include the person in any sharing of information.
I don’t think the areas I’ve touched on today are particularly new or earth-shattering – but they do demonstrate the amount of work that people who have chronic pain need to put into their wellbeing just to get to the point that many of us as health care providers accept as ‘normal’. Let’s not forget these challenges when we start to think about ‘pushing’ our clients to do more…
I’m heading off for a couple of days to the Wild West Coast of New Zealand. It’ll be a fun weekend at Lake Mahinapua, which is just south of Hokitika. So I’ll post a couple of nice photographs from my last trip to keep the hook baited! There will be more shots after the weekend – don’t forget you can always visit my Flickr pages if you want to see some of what I do for my relaxation!