This is a made-up story by physiotherapist Gail Sowden based on the real-life struggles of many patients:
When her pain began, Pat was hopeful that her GP would be able to get rid of it or quickly refer her to a specialist service. Her friends told her they'd had similar problems and were sorted fairly quickly.
The healthcare professionals Pat saw spoke confidently of people with a similar problem who had great results on a particular treatment. But different healthcare professionals gave different diagnoses, explanations and advice, which was confusing.
Pat was aware that, like her, many people’s tests come back as relatively normal or don’t explain the amount of pain the person is in. One clinician said that the pain was ‘all in her head’.
Pat felt distressed and angry for a long time. She had read how people suffering with pain often experience many years where they feel they haven’t been taken seriously.
The pain didn’t lessen
As well as conventional treatments, Pat tried different aids and adaptations to reduce the pain. Occasionally they made things easier in the short term, but she worried about becoming dependent on them or more disabled by them.
Pat felt that the pain didn’t lessen for as long as promised or at all. The treatments and gadgets came at considerable costs in terms of money, dependence, side-effects, time and effort, as well as the emotional cost of managing the disappointment when yet another thing failed to deliver what it promised.
The more time Pat spent trying these things, the less time she was able to spend doing enjoyable activities.
Pat worried that she was harming herself if certain activities increased her pain, so she tried to avoid doing them. If she did less, her pain sometimes reduced for a short while – but she was doing less of the things she enjoyed.
The pain started to affect Pat’s relationship
The combination of doing less but still being in pain started to affect Pat’s relationship with her husband. She was more short-tempered and they were less able to do things together. Pat felt guilty when her husband did tasks that she had managed before.
Pat didn’t want to lose her independence and would try to make the most of good days, only to experience more pain later. Her concentration and problem-solving skills weren’t as good as they used to be, and she worried that this might be related to her medication.
Friends didn’t invite her out as much. She tended to say no to invitations as she didn’t want to let people down and worried she’d be holding the others back or would overdo it. She felt increasingly isolated and started to wonder if she might be getting depressed.
She hoped the answer was out there
In spite of all this, Pat continued to hope that the answer was out there. She thought she would find the answer if she just tried harder, asked to see another professional or bought a different gadget.
Well-meaning relatives and friends advised she see a particular complementary or alternative therapist or try some type of new, often radical, treatment. Some of these treatments felt nice at the time, but they failed to help her in the long term.
Pat felt increasingly desperate as she thought about how things used to be and how her life seemed to be falling apart.
Pat had heard about different injections and operations. Her new GP referred her to try some injections. Unfortunately they didn’t work.
Although Pat was in severe pain, she wasn’t suitable for surgery. She was told that operations are only appropriate for a small number of people and that it still might not help in the long term.
In a way she was relieved because she was aware from previous abdominal surgery that there were potential risks and complications, no guarantee of success and often a long and difficult recovery period.
She started to lose confidence
The more Pat struggled to control her pain, the more she avoided the things that were important to her, such as spending time with friends, gardening, playing with her grandchildren and going on holiday. She started to lose her confidence in meeting people.
A pain rehabilitation centre
Pat went back to her GP and asked about other treatments. He suggested another course of physiotherapy but also mentioned a new pain rehabilitation centre. Pat was keen to find out what the service could offer and asked her GP to refer her.
Pat attended the service and was assessed by a team of different clinicians. They spent time finding out about the effects of her pain. They explored her medication and her experience of treatments not leading to long-term pain reductions or increases in function.
Instead of trying treatments again that had already failed, they suggested a different approach that would involve rehabilitation to help her to do the things that were important to her in life, with the pain.
Pat was sceptical as she felt she’d already tried this and didn’t want to be in pain. They asked Pat to identify what she’d like to be able to do and outlined the purpose and structure of a group pain rehabilitation programme aimed at helping her achieve her goals.
Pat and the pain team thought that she would be suitable and might benefit from the group rehabilitation programme.
Pat attended the programme and felt that she had benefited from being with other people who had similar difficulties. The programme was hard work and at the end her pain was pretty much the same. However, she was able to do more of the things that were important to her.
She had a better understanding of her choices and what to use as her guide in making decisions about what she did. She also felt less distressed by her pain and was less disabled.
She was playing with her grandchildren again, socialising more and went on holiday for the first time in years. Overall, she felt that she had a much better quality of life. She, not her pain, was now back in charge of her life.
This case study is based, with the authors’ permission, on one written by Dr Kevin Vowles and Dr Miles Thompson in a book chapter in 2011 (Acceptance and Commitment Therapy for chronic pain. In L. M. McCracken (Ed.) Mindfulness and Acceptance in Behavioral Medicine: Current Theory and Practice (pp. 31–60). Oakland: New Harbinger Press).
Gail Sowden is a consultant physiotherapist with the Interdisciplinary Musculoskeletal Pain Assessment and Community Treatment (IMPACT) Service in Staffordshire and the Arthritis Research UK Primary Care Centre at Keele University.