A couple of people commented on my post about setbacks saying that they wished the people they saw were like Allan – instead of quickly going back to ‘old habits’, Allan chose to stay with self management even when he enountered a painful flare-up and it was suggested that he have another scan and go back onto medications. You’re right – not everyone ‘gets it’ the way Allan did, so I thought I’d discuss a not-so-good situation to illustrate some of the things that can interfere with self management.
Julie is a woman with a four year history of neck, upper thoracic and shoulder pain, with headaches. She has had years of individual treatment by physiotherapists using both hands-on and hands-off therapy that have made no difference to her pain. She’s also had medications, injections to various trigger points, and seen an occupational therapist and a clinical psychologist – and more recently, completed a three week interdisciplinary pain management programme. During the programme, Julie increased her sitting tolerance, began to use her arms normally, gained strength and range of movement in her upper limbs, obtained better neck movement, her mood improved and she developed clear plans for her future.
Julie left the programme with a clear pain management plan, a setback plan and several goals that she thought were achievable over the following month.
When Julie came to the one-month follow-up session, her best laid plans were in tatters. In the time since the programme she’d had several family events that hadn’t gone well, and her partner had lost his job. The pair (who hadn’t been getting along for a while) had moved into a new house that stretched them financially and were arguing about money and their relationship, with Julie’s partner saying she was lazy and why did she do ‘only half a job when you’re cleaning’. Julie’s children were moving in with her, bringing her only grandson but also expecting that Julie would mind him during the day, and Julie was feeling overwhelmed and depressed. So depressed that I was concerned about her and arranged a mood review very quickly.
She’d stopped exercising, stopped planning her day, stopped using assertive communication, stopped using her diaphragmatic breathing, hadn’t used her thought records or other cognitive strategies, her sleep was poor and she’d even stopped eating and taking regular showers or cleaning her teeth.
She didn’t respond to mood medication, being someone who doesn’t take medication easily and having lots of side effects. She had trouble using the coping strategies – she knew what to do, but her own belief was that she ‘had to help her family out’ before she could or would attend to her own needs for activity regulation, using relaxation techniques, or focusing on her own return to work goals.
Julie came up with many reasons for not using her setback plan – most of them around either not being able to plan (because other people would upset her plans), or being unable to say no to her family or partner when they wanted her to do things.
Despite some months of therapy, Julie continues to find it hard to be assertive and put her own needs and goals first.
Some of the supports we’d established to help her ‘have’ to leave the house and focus on her own needs didn’t happen. One of those supports was to have her vocational rehabilitation start immediately after she completed her pain management plan – this didn’t happen due to ACC having internal processes that needed to be followed.
Four months after her programme was complete she still hasn’t started any work trials. She’s stopped planning her day, her activities have returned to their old ‘boom and bust’ pattern, and she’s having problems with sleep – and reporting headaches that won’t settle. She’s gone back to her GP for medication for her headaches, even though the medications don’t help.
What went wrong? Here are some of my thoughts:
- Some of Julie’s long-term patterns of thinking and behaviour haven’t changed. She’s very fearful of experiencing the discomfort of being assertive and learning to say no. It’s something she learned a long time ago isn’t safe, due to some very traumatic experiences. If what she says and does might lead to someone feeling offended or angry, she is afraid of the consequences. This isn’t something that is directly related to pain management – but it certainly affects her ability to use many of the strategies she’s learned about.
- In a similar way, she responds to other people’s demands or expectations in preference to attending to her own needs. It’s difficult for her to go for a walk, do relaxation, even to plan her day because ‘someone’ or ‘something’ will get in the way of what she’s planned. If this happens, she feels disappointed, frustrated and guilty – and these aren’t experiences any of us like.
- She feels good about herself only when she’s approved of by others. Julie is very good at attending appointments ‘because I’d let someone down if I didn’t go’, she’s a diligent student in-session – because she wants therapists to approve of her. When someone isn’t happy with her, even if it’s about that person’s own mood, she works incredibly hard to appease them – often to her own detriment. So if her partner is grumpy because he’s lost his job, she tries to ‘do more’ around the home ‘to keep him happy’ – and because he’s not happy for reasons other than what she does or doesn’t do, she rarely gets much positive from him.
- Systems that need to be followed because of administrative procedures don’t always dovetail with what an individual needs. Julie had made great gains from being in a structured environment where the expectations were clear, and she could present this to her family as something she ‘had’ to do and in this way feel OK about setting limits on them. When ACC wasn’t able to immediately come in with a work trial or some other structured return to work programme, she didn’t have this ‘external’ reason she could give to her family, and couldn’t therefore justify carrying on with her own goals. Maybe Julie has always needed things from outside her own locus of control to help her feel OK about saying no to others. It’s not ACC’s fault that systems needs to be followed – but for Julie, it’s meant things just have not been in place at the times that would have helped her make the most of her pain management programme.
What could I have done differently?
I’m not sure – pain management isn’t about a whole personality overhaul, and it’s not about mending a pattern of responses that someone like Julie has had for over 20 years. Julie’s had some trauma in her early years, this might have lead to her feeling vulnerable, not trusting her own strength, needing to have approval from others and feeling that simply wanting things for herself is scarey, selfish and unsafe. Some core belief or schema therapy might be helpful, or maybe some dialectical behaviour therapy to help her cope with the negative feelings that come up for her when she does things that enact her core beliefs.
But is this part of pain management?
Again, I’m not sure. If she can’t use the skills she knows about but hasn’t experienced, or tries to use but the skills generate a whole lot of negative and distressing emotions and consequences – then maybe it is a necessary part of learning how to cope with pain. Before she had her pain these underlying patterns of behaviour were certainly there, but because she no longer has that extra capacity to cope with activity the way she did before her pain maybe they’re more of a problem.
I’d love to hear what other pain management therapists think about this kind of situation. What would you do? The reality is that at some point in the next month or so she will start a work trial, and she’ll probably enjoy this – but still have trouble being assertive even at work, she’ll still find it hard to regulate how much activity to do and remain in her boom and bust pattern (unless a therapist goes into the workplace and sets it up for her), and when she gets a headache or her pain flares up, my bet is she’ll go back to her GP for more medication. She’ll probably be re-referred to pain management at some point too.l