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How to live well with persistent pain | Psyche

Flowering hawthorn Crataegus Monogyna. Photo by Helmut Meyer/Getty

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Guide

How to live well with persistent pain

Tools from acceptance and commitment therapy can help you sidestep the struggle against pain – and thrive, in spite of it

by Whitney Scott + BIO

Flowering hawthorn Crataegus Monogyna. Photo by Helmut Meyer/Getty

Need to know

Burning. Stabbing. Squeezing. Throbbing. Aching. At the pain clinic where I work as a psychologist, these are just some words that people use to describe the different types of pain they feel.

Some degree of pain is a natural part of everyday life for most people, but not all pain is the same. Acute pain is pain that goes away relatively quickly – for example, when you stub your toe. In contrast, persistent pain – also known as chronic pain – is defined by the World Health Organization as pain lasting longer than three months. Persistent pain doesn’t have the same survival function as acute pain. If you had an injury before the pain began, it should heal within this time, yet the pain persists. Crucially, persistent pain also often occurs without injury or in the absence of another underlying medical condition. In this situation, like an overly sensitive fire alarm, the nervous system is constantly sounding that there is danger, even when there may not currently be any danger.

All pain is real

Because it is subjective, pain doesn’t map well onto ‘objective’ biomedical tests, such as MRI scans. So, you may feel excruciating pain and be told that tests revealed no ‘structural damage’ in your body. Even when pain is related to an injury or another medical condition, there often isn’t a one-to-one relationship – the pain you feel might be more or less than expected based on your degree of tissue damage or other physiological measures. This is perhaps one of the most confusing and frustrating aspects of persistent pain. However, even when no disease or damage is apparent, the pain you feel is very real and reflects changes to your nervous system.

For multifaceted reasons including genetics, nervous and immune system functioning, past experiences with pain, culture, pain beliefs and other people’s responses, each person has a different pain threshold and tolerance, and we all react differently to the same painful stimuli. Clinicians in the field like to say: ‘Pain is what the person says it is!’

Historically, researchers and clinicians have focused on trying to understand the biomedical causes for persistent pain, and research continues into these. When pain is related to an underlying medical condition (such as rheumatoid arthritis, diabetes, multiple sclerosis or HIV), it’s important to first explore management of that medical condition with your doctor. When pain arises apparently without the experience of injury or another identified medical condition, it’s also important to speak with your doctor to rule out potential causes of the pain that might require medical attention. Yet pain often persists even after treating any underlying medical conditions or when no such conditions are identified.

There are problems with focusing on eradicating pain

At present, there is unfortunately no cure for persistent pain and, for many people, appropriate medical investigations don’t provide an answer. Pain medications or interventions will often have only a modest benefit. Pain relief is also highly individual. What works for one person might not work for you.

Another key challenge with efforts focused on relieving pain is that they can come with side-effects or personal costs. For example, opioid analgesics can cause drowsiness, constipation and addiction, among other things. Side-effects from anticonvulsant medications – used to treat nerve pain – include dizziness and weight gain. For some people, these side-effects impact their quality of life more than the pain.

As another example, people often say that resting helps keep their pain levels down in the short term. However, they also often express dissatisfaction that resting means that they miss out on life, and pain continues in the long term. Distraction is another natural strategy to try to reduce pain. This may work for acute pain. However, research suggests that distraction may not be helpful for persistent pain.

Psychological support can help people to live with pain

Pain encompasses unpleasant physical sensations in the body and the thoughts and feelings we have about these sensations. In my work, I see the profound impact that persistent pain can have. The people I work with often express how pain has touched all aspects of their life, including their work, finances, hobbies, relationships, identity and mental health. These are reasons why psychological support and techniques can make such a positive difference to living well with persistent pain. I’m aware that the suggestion of a psychological approach can sound like I’m dismissing physical pain as ‘not real’. But just because thoughts and feelings are part of the pain experience, this does not mean that pain is ‘in your head’. All pain is real. Psychological factors are a piece of the complex pain puzzle that also includes biological processes.

There is now established evidence that psychological treatments, such as cognitive behavioural therapy (CBT), can benefit people with pain. I use a more recent form of CBT called acceptance and commitment therapy (ACT) for which there is growing evidence for persistent pain. The word ‘acceptance’ can be misleading so it’s important to be clear about how we use it. Acceptance doesn’t mean giving up or resigning to live with the pain forever. Acceptance means making space for the pain, and thoughts and feelings about the pain, to be present when this is helpful. By reducing the struggle to control pain, you may be freer to connect with the people and activities you care about. This latter bit is the ‘commitment’ part of ACT.

ACT is not a cure for pain and does not focus on reducing pain. Instead, ACT targets the impact of pain on your life. I use this approach to help people make life bigger around the pain, so they can live a rich and meaningful life alongside it. In this Guide, I will walk you through some ACT exercises to help you live as well as possible with pain. If you’ve previously tried a different psychological approach for managing the impact of pain without benefit, it is still worth keeping an open mind to other approaches, such as the ACT strategies in this Guide, to see whether you connect with them.

What to do

Assess your current pain-control strategies

It’s useful to first take stock of the things you have tried to manage pain. This will provide a clearer picture of what’s working in terms of pain relief and your overall quality of life.

So, as a first step, use something like the table below. This will also help determine whether the ACT approach may be useful for you. List all the things you have tried to control the pain and reflect on the short- and long-term benefits of these strategies. For each strategy, think honestly about whether you have experienced any side-effects, costs or downsides (I’ve included some sample answers, but you will have your own):

Pain-management strategies I have tried. (Note: it’s very important to discuss any change to your pain medications with your doctor. Reducing pain medications abruptly can be dangerous and requires medical advice)

If your efforts to control pain take up lots of energy and don’t work long term, ACT offers a radically different approach by helping you to let go of the struggle with pain and the constant pursuit of pain relief. This involves learning strategies to make space for the pain to be there, when doing so allows you to do things you want to do.

To better understand this approach, imagine you’re in a swimming pool and trying to hold an inflatable beachball under water, a metaphor I’ve adapted from the guide The Big Book of ACT Metaphors (2014) by Jill A Stoddard and Niloofar Afari. The beachball represents the pain – and thoughts and feelings about the pain – that you’ve been trying to control or avoid. You may be able to push this beachball under water for a while and this makes the pool appear calm. However, your arms soon get tired, and the ball eventually shoots back up. While you’re holding it down, the ball also stays very close to you. Holding down the ball makes it difficult for you to swim and splash around and have fun.

ACT helps you learn how to let go of the ball so that it rises to the surface of the water and floats around. This gives you the freedom to choose what you want to do in the pool and have more fun – maybe some gentle laps or even a big old cannon ball!

Once you’ve completed your table of pain-management strategies you’ve tried, you may notice that some of your approaches are helpful. That’s great. It’s normal to want to push the pain ‘beachball’ under water and sometimes this works. However, if your experience tells you that certain pain-control strategies aren’t working, have significant side-effects or make your life smaller, this could be a good opportunity to try something different. The next steps will give you some practical tools from ACT that you can use to allow the pain ‘beachball’ to be in the pool so that you can have more freedom to swim around.

Notice and step back from thoughts and feelings about pain

Picture this. You’re woken in the middle of the night by a shooting pain in your leg. Your mind races with thoughts about how awful tomorrow will be and you analyse yesterday to see if you ‘overdid it’. You start thinking over and over about why no one has been able to explain the reason for this excruciating pain. What do you do?

Maybe you get caught up in these thoughts and start feeling anxious and angry. Maybe you distract yourself by scrolling on your phone or tell yourself to stop thinking these ‘bad’ thoughts. Maybe you plan to cancel meeting up with your friend tomorrow as you’d planned. Getting back to sleep feels harder and harder.

These thought patterns are normal, especially when you have persistent pain. This is your mind doing what it evolved to do – protect you. However, following these thoughts might lead you to feel overwhelmed or stuck.

The exercise below is a way to get unstuck from some of these ‘mind traps’. Practise it at night if you’re kept awake by pain, any time you feel overwhelmed by repetitive or racing thoughts about pain, or whenever thoughts about what you ‘should’ or ‘can’t’ do because of the pain block you from doing what you want to do.

Exercise: Noticing thoughts like clouds in the sky
– adapted from the book Get Out of Your Mind and Into Your Life (2005) by Steven C Hayes with Spencer Smith
  • Close your eyes or fix your gaze on a point. Let your mind wander. Imagine putting each thought that pops into your mind on to a cloud in the sky and watch each cloud float by.
  • Try not to rush the clouds, with your thoughts on them, along. Simply notice each cloud as it comes and goes at its own pace.
  • Your mind will wander and you will get distracted. That’s what our minds do! When you notice this happen, gently refocus your attention on your thoughts and place each one on a cloud.
  • You can also notice your feelings as they pop up and place each feeling on a cloud.

This exercise can help you see that you don’t always have to follow what your thoughts tell you. For example, you may have the thought: ‘I can’t see my friend because I’m in too much pain.’ By noticing this as just a thought and allowing it to come and go like a cloud in the sky, you may find that you have more freedom to choose for yourself whether to see your friend or not. Don’t just take my word for it, though: give it a go!

It’s normal to feel confused or frustrated when you first do this exercise or to worry that you’re ‘not doing it right’. If you’re used to pushing your thoughts away or distracting yourself, it will feel strange to bring this mindful awareness to your thoughts. Remember, ACT doesn’t focus on getting rid of the pain. It focuses on helping you to live more fully with the pain. This takes practice, and you may notice something different each time you do, so get curious.

It’s also OK to feel sceptical about this exercise – people often are. If you notice thoughts such as ‘This isn’t going to work,’ you could test out labelling this as a thought by saying: ‘I am having the thought that this isn’t going to work.’ Doing this can help you to have a thought and do something different, such as sticking with the exercise when you are doubtful.

There is no one right or wrong way to do this exercise, and you can get creative. People I’ve worked with have found it helpful to place their thoughts and feelings on clouds/bubbles/balloons in the sky, leaves on a stream, cars passing on the road, or boats floating along a river.

Bring mindful awareness to your body

It’s natural to want to distract yourself from painful body parts, but as with thoughts, you can also practise noticing and making space for bodily sensations as they show up. To return to the beachball analogy, practising mindful awareness of your body isn’t saying you like the beachball (or the pain) – it’s akin to letting go of the ball so it can float around, sometimes further away. You may then be able to notice other things happening in your body and the pool around you. Even when the ball floats very close to you, you are still more free to notice other things going on.

You can bring this approach to the daily activities that are important to you. Some of the people at my clinic have developed certain unhelpful ways to try to manage their pain, such as ‘pushing through’ or saying ‘no’ to more and more activities, and perhaps you’ve tried this too. In contrast, bringing mindful awareness to your body can help you approach daily activities with more flexibility and gentleness so that you have more options. Here’s a specific exercise to help you try this out:

Exercise: Mindful body scan
  • You can do this body scan from the top of your head down to your toes (or the reverse). Bring your attention to different areas of your body. Notice the sensations that you feel in each body part with curiosity. See if you can look at each sensation in detail, like a scientist would describe an object: how big is the sensation? Is it surface level or deep? Hot or cold? Does it change or stay the same?
  • Notice any urge to get rid of each sensation or to label it as ‘good’ or ‘bad’. See what it’s like to observe each sensation, and make room for them to be there without trying to change them. This isn’t the same thing as liking these sensations. It’s more similar to saying: ‘I will have you because you’re already here.’

If it feels too challenging to focus on very painful areas of your body, you might start this exercise with areas that are less painful. Over time, you might see what it’s like to bring mindful awareness to body parts that are more painful. There is no right way to do this, so test out what works for you. The key is to get curious about your body and what’s showing up.

Your mind will probably tell you that you’re not doing this ‘right’ because you still have pain or don’t feel relaxed. If you’re getting caught up in these thoughts and this blocks you from sticking with the exercise, see what it’s like to thank your mind for these thoughts. This is another way to reduce the power of thoughts so that you can choose what you do, rather than following what your mind is telling you.

It’s possible you might notice a temporary increase in pain during this exercise. Remember, the purpose of doing mindfulness within ACT is to help you find different ways of responding to pain, so you can do more of what matters to you in life. So, keep this purpose in mind when you choose whether to continue with this mindful body scan or not.

If you’re struggling to see the purpose of doing this exercise and the previous one, see if you can connect with Fatima’s story (not her real name):

When the pain started, Fatima was determined not to let it slow her down. She often felt very frustrated about the pain when doing household chores or working out at the gym, so she raced through these activities to ‘get through them’. Over time, this made the pain flare up, and she started avoiding these activities.
Fatima and I discussed how going for walks with friends was important to her now, as it was a way to care for herself and connect with others. However, she hadn’t been doing this for a while because she worried about pain increasing. We practised a mindful body scan together. We then explored how she could use this while walking, to tune into her body to help judge when to slow down and take a small rest (rather than pushing through). She also practised noticing and stepping back from thoughts and feelings, such as ‘My friends will be annoyed if we have to stop’ and ‘I’ll be embarrassed if I can’t keep up’ that she was struggling with.
Fatima was thrilled that she was able to use these skills on a walk with a friend to help her recognise and communicate when she needed to slow down. She now goes for more regular walks with friends without crashing for a few days afterward.

Hopefully, Fatima’s story helps give you an idea of how mindful awareness and stepping back from thoughts can help you explore different ways of doing things that matter to you. That last point is crucial, and next I will show you a way to explore more deeply what’s important to you, to ensure the activities you choose to do with pain are meaningful.

Connect with and do what matters to you

We’re all free to choose the things we care about – our values. They give you a deep sense of purpose in life. They are ongoing qualities of action that are like a compass pointing you in the direction that you want to go. Connecting with your values (rather than other people’s) can motivate you when you experience the challenges that come with pain. You might wake up with pain and feel overwhelmed by the day ahead. Or you might notice more pain at the end of a busier day. Your values can help you decide what actions and activities are worth doing in the face of this pain.

Many people I see in my work find that the pain and their struggles with pain make it hard to identify their values. If you are in this situation, try the next exercise.

Exercise: Your hero/heroine
– adapted from The Big Book of ACT Metaphors by Stoddard and Afari
Think of your personal hero or heroine. Someone you look up to and respect. Write down all the qualities that this person has that you admire. Next, answer these questions:
  • How would your hero/heroine handle the challenge of pain?
  • If you had the qualities that your hero/heroine demonstrates, what would other people see you doing?
  • What does this mean about what is important to you deep down, and what you want your life to stand for?
Use your answers to these questions to make some ‘values statements’ about what is important to you, such as ‘I want to be a supportive friend’ or ‘I want to continue to develop and express my creativity.’

People I’ve worked with have reflected on their values in different areas of life, and you could try this too, such as:

  • building the quality of relationships that you want with other people;
  • keeping physically and emotionally healthy;
  • engaging in paid or volunteer work, personal development/learning, or housework;
  • doing activities for fun or pleasure; or
  • connecting with spirituality, whatever this means to you.

Your mind might get busy telling you that these values are impossible because of pain, and you may feel strong emotions like sadness or anger here. That’s understandable. Remember, you can notice each of these thoughts and feelings as they come and go, like clouds in the sky.

Values are useful to guide your daily choices and actions. The next exercise can help you identify some actions that are in line with your values.

Exercise: Small steps
– adapted from the book ACT Made Simple (2nd ed, 2019) by Russ Harris
  • Once you connect with what you care about, it can sometimes feel too big to get started. For example, you may have the value to ‘continue to develop and express my creativity’. A longer-term goal that is consistent with this value may be to consistently bake a new recipe each week. If you’ve not done this in ages (or ever), this will probably feel daunting and may not be realistic.
  • To move forward, it can help to start small. Think about the smallest possible action that you could take to express your value. For the value mentioned, the smallest step might be to look up a new recipe online. Getting the ingredients or making the first recipe might be bigger steps for different days.
  • With your small step in mind, see if you are willing to commit to doing it in the next 1-2 days with the pain exactly as it is. If you are willing to do this, tell someone you trust about your small step to keep you on track. If you’re not willing to do this, see if there is an even smaller step you could take, or maybe there is another area of your life that feels more important to work on.

Doing your small steps can feel satisfying and energising, which can motivate you to take even bigger steps toward your values. Starting small can increase your chances of success. You may still experience failure with your small steps. That’s life. When things don’t go to plan, you can use small steps to reconnect with your values and to get back on course, or you can choose a different course.

For inspiration on small steps (and possibly bigger ones!), check out the Footsteps Festival. This online festival was coproduced by people with pain and provides a wide range of events and activities to help live well with pain.

Key points – How to live well with persistent pain

  1. All pain is real. Even when no disease or damage is apparent, the pain you feel is very real and reflects changes to your nervous system.
  2. There are problems with focusing on eradicating pain. Treatments or strategies to control pain often don’t work long term and can restrict your life more than the pain.
  3. Psychological support can help people to live with pain. Acceptance and commitment therapy (ACT) doesn’t seek to cure pain, but to help you live a rich and meaningful life alongside pain.
  4. Assess your current pain-control strategies. If your efforts to control pain take up lots of energy and don’t work long term, ACT offers a radically different approach by helping you to let go of the struggle with pain and the constant pursuit of pain relief.
  5. Notice and step back from thoughts and feelings about pain. Use exercises from ACT to help you recognise that you don’t always have to follow what your thoughts and feelings tell you.
  6. Bring mindful awareness to your body. As with thoughts, you can also practise noticing and making space for bodily sensations as they show up – doing so can reduce the suffering that can come with pain.
  7. Connect with and do what matters to you. Identifying and connecting with your values (what you care about) can motivate you when you face the challenges of pain.

Learn more

Managing persistent pain is not easy. Setbacks are inevitable and flare-ups happen. The strategies in the What to Do section above might seem simple. This does not mean that there is a quick fix for persistent pain. These are ways that some people find helpful to let go of the struggle that can come with pain. Not everyone will find every tool useful and that’s OK. Whatever you connect with is just fine.

Be kind to yourself

It can be common to beat yourself up when you experience an increase in pain or to focus on the things you ‘could have’ or ‘should have’ done differently. This adds fuel to the fire of an already stressful situation. A different approach here is self-compassion.

The psychologist Kristin Neff who has written extensively about self-compassion defines it as:

  1. Being kind to yourself when you experience pain or failure, rather than being self-critical.
  2. Bringing mindful awareness to thoughts and feelings, rather than over-identifying with them.
  3. Seeing difficult experiences as part of the human condition and connecting with others, rather than isolating oneself.

There are clear overlaps between ACT strategies and self-compassion. Recent research also points to similarities between self-compassion and the capacities developed within ACT. Here’s another way to cultivate and practise self-kindness, adapted from Neff:

  • Think about someone in your life you care about and who cares about you. This could be a family member, friend, colleague, etc. Imagine that this person is struggling. What would you say to them? How would you support them? Think about the words you would say, your tone of voice, body language, and so on.
  • Now, think about times when you are really struggling with pain. Perhaps when you wake in the night with pain or have an increase in pain after doing an activity. What do you typically say to yourself in these situations? What words or tone of voice do you use to speak to yourself? Is this different from how you would speak to someone you care about when they are struggling?
  • What would it be like to treat yourself with the same care, warmth and support that you show someone you love when they struggle? Can you give this a go and see what it is like?

It’s important to say that society is not always compassionate towards people with pain, which can make it hard to practise acceptance and self-compassion. People with pain may experience stigma and discrimination, which can affect their mental health. Although ACT and self-compassion strategies can help protect your wellbeing in the face of these challenges, societal change is also paramount to improve how people like you, who are living with pain, are treated. There are many advocates and patient organisations that are working tirelessly to raise awareness and improve the lives of people with pain. For a dose of hope, find out more about the amazing work of organisations and individuals, such as Flippin’ Pain in the UK, the London-based journalist Natasha Lipman, and Pain BC in Canada.

Links & books

The video ‘Pain and Me’ (2017) from the psychologist Tamar Pincus of the Centre for the Study of Pain and Well-being at Royal Holloway, University of London is an excellent visualisation of the ACT approach to persistent pain.

The video ‘Mindful Movement Demonstration’ (2019) led by Daniel Board, a specialist pain physiotherapist, builds on the mindful body-scan exercise in this Guide, and shows how you can practise mindful awareness when doing gentle movements.

The book Living Beyond Your Pain: Using Acceptance and Commitment Therapy to Ease Chronic Pain (2006) by the psychologist JoAnne Dahl in the US and the clinical psychologist Tobias Lundgren in Sweden provides a more complete overview of how ACT can be helpful for people with persistent pain, and has lots of exercises to practise.

The website Self-compassion summarises the latest research on the topic and has many helpful self-compassion exercises from Kristin Neff.

The Physiotherapy Pain Association – the professional body for physiotherapists in the UK – has compiled a number of useful resources for people living with persistent pain. These include general information about pain, tips for keeping active, and insights from people living with pain.

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4 May 2022