Before the accident that led to my Complex Regional Pain Syndrome I prided myself on my ability to manage difficult situations. A career filled with high-pressure jobs had given me vast experience in dealing with stress – positively in some instances, in others less so. The cumulative effect was that I was largely unflappable; I could be surprised and even shocked, sure, but it was rare for events to be so overwhelming that they rendered me unable to cope. Fundamentally I was an optimist; I believed that things would generally work out okay and experience had taught me that most of the time I was right.
That was until CRPS decided to rear its ugly and deeply troubling head.
For those of you who’ve read my story you’ll know that the development of my chronic pain changed my life entirely, ripping away things I loved and much of what made me who I was. It’s a story that sadly will be familiar to many chronic pain sufferers. The loss of my mobility, my career and my independence were terrible but they were ones that I could see coming; even now, nearly 7 years on, I find the disappearance of my inner calm and positive attitude unexpected and challenging to deal with. The truth is that what happened has made me fearful of the future in a way I never was before.
My fear manifests in different ways. I have regular nightmares about something terrible happening to my family. I find it much more difficult to bear the challenges life throws at me. I admit that I think some of this fear and struggle to deal with things is understandable; after all, my life changed in a heartbeat to something unrecognisable, so of course I’m afraid of losing everything as it’s already happened to me once. After all, I am in constant crippling pain, so of course I find it harder to deal with stuff than I did when my body wasn’t at war with itself.
So yes, my fear and my struggling to cope is understandable. But just because it’s understandable doesn’t mean it’s harmless.
The danger of catastrophizing
It’s widely accepted that in addition to the physical, our brain and ways of thinking play a major part in chronic pain. Pretty much every pain management programme emphasises both physical and mental therapy, involving specially trained psychologists to help pain sufferers live better with their illness.
Doctors now recognise that a particular element of our thinking about pain can have a very significant role to play: that is the level to which we catastrophize our pain. Catastrophizing is exactly what it sounds like: a cascade of negative thoughts that turn something into a catastrophe, characterized by a lack of confidence and control and an expectation of negative outcomes. Hand in hand with catastrophizing comes fear avoidance, defined as behaviour that avoids certain activities for fear of exacerbating pain or injury. A certain amount of both of these things is healthy and to be expected (otherwise everyone would be out base jumping every weekend), but when they become driving forces it’s not so good.
Catastrophizing and fear avoidance can both be assessed through questionnaires filled out by the patient. The Pain Catastrophizing Scale asks users to rate how strongly they agree with 13 statements such as “I worry all the time about whether the pain will end” and “I become afraid that the pain will get worse”. These questions aren’t about the pain itself, but the patient’s thinking about their pain.
Catastrophizing is linked to greater pain and disability
The overall score breaks down into 3 different elements; rumination, magnification and helplessness. In other words, the extent to which we obsessively think about our pain, how much we mentally exacerbate what we’re feeling, and how much control we think we have over it. Out of a maximum score of 52, a response of more than 30 is considered clinically significant and researchers found that it corresponds with higher pain and greater disability; in one study, 70% of this group remained unemployed one year post injury, 70% described themselves as totally disabled for occupationally-related activities, and 66% rated as at least moderately depressed. If your pain takes over your thinking it can take over your life.
Of course, it’s not as easy as just thinking “oh right, I’ll stop thinking about my pain then”. That won’t work as the pain’s still going to be there. Just changing our thinking won’t magically mean that you can walk again or go back to work or hit the gym. But it does suggest that if pain patients can think more healthily about their pain then they’ll probably feel a bit better in a lot of ways.
What can I do to stop catastrophizing?
The good news is that there are lots of things you can do to stop catastrophic thinking. Speaking to a counsellor or psychologist who’s knowledgeable about pain is a great place to start and I would recommend to absolutely anyone who’s living with chronic pain. Cognitive behavioural therapy is especially helpful for challenging negative thinking and can provide you with a toolkit to use if you feel yourself start to spiral. Your pain management team or your GP will be able to help you access appropriate counselling, but unfortunately there’s often a long wait on the NHS. There are a lot of private counsellors and some of them charge by sliding scale according to how much you earn. Always make sure that whoever you see is registered with a professional therapeutic organisation; this is a good place to start your search. Mindfulness can also be a very helpful tool for recognising and controlling negative thinking.
On a more basic level, controlling what we say can be helpful. Don’t allow yourself to exaggerate about anything at all; be specific and realistic in whatever you’re talking or thinking about. Try to avoid viewing things in an absolutist all or nothing way. Life is never completely one thing or another; making yourself acknowledge the realistic shades of grey of any situation will help to stop your thinking spiralling out of control. Apply this to every element of your life and it will start to change the way you think about your pain.
Self-care really matters. Getting enough sleep is important and often difficult with chronic pain. See your GP if sleeping is really difficult for you and ensure you practice sleep hygiene. When I find sleeping especially hard due to my pain, I often find that conducting a mindfulness body scan can really help me to relax.
Also think about your internal monologue. One problem I faced was that for a long time, I felt responsible for my illness and so guilty over the fact I just couldn’t get better. I would beat myself up over my inability to work and tell myself I was useless and a waste of space. It was horrible thinking all these things about myself and it definitely contributed to my tendency to view the world in all or nothing terms. Through counselling I was finally able to accept that having pain didn’t make me a bad person, that this wasn’t my fault and that I didn’t deserve to feel so awful. In the end, the thing that worked for me was imagining my best friend in my position and thinking about what I’d say to her and how it compared to what it was saying to myself. It’s a powerful exercise and one that can really open your eyes to how unfair and unkind our interior voice can be. You deserve just as much love and kindness as you would show to anyone else you care about; start being good to yourself and life will immediately start to seem better and more manageable.
There’s no simple answer as to how to live your life well with chronic pain and the picture looks a little different for each of us. Pain makes so many things so difficult and it’s completely unfair. But I found that at some point I had to decide if I was going to spend the rest of my life focussing on the pain and injustice, or if I could put it to one side and start living the best life I could despite my pain. It’s a tricky road and never one that we’ll get right all the time, but my life is definitely infinitely better from the decision to stop putting my pain front and centre. I hope yours will be too.
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