Patient-empowerment and self-management have many benefits; self-compassion being just one of them. #ClinicSpeak #ThinkHand #MSBlog
The study below shows that when pwMS, or other chronic diseases, can self-manage your disease, your physical health depends strongly on the expectancy of a positive outcome (realistic thinking). The corollary is that when options for self-management in controlling your disease are limited (no DMTs, no prevention of infections, no lifestyle modifications, etc.) then your physical health depends more strongly on unrealistic thinking, or dare I say beliefs and/or pseudoscience.
When some pwMS are told that they have passed from the so called 'relapsing phase' to the more 'advanced phase' (formerly called SPMS) they shift from an having an expectancy of a positive outcome to either a 'sense of hopelessness' or in some cases to a phase of 'unrealistic thinking'. For example, several of my patients with more advanced MS have gone onto to explore risky therapies abroad, contrary to my advice, in the hope of curing their MS and reversing their disability. Unfortunately, this phenomenon is fuelled by dogma that states MS is a two-staged disease, the first stage driven by inflammation and the second stage being due to neurodegeneration, and that there is a 'window of opportunity' to treat MS. Many experts in the field simply don't accept the possibility that MS can be modified through-out its course, which perpetuates the problem.
At Barts-MS we actively promote patient-empowerment and self-management of MS. It is clear that by doing this pwMS learn 'self-compassion'. We also make it clear that we subscribe to the hypothesis that MS is potentially modifiable throughout its course, which is why we have launched our #ThinkHand campaign and explains why we want to do a trial in pwMS with more advanced MS. We want to test whether, or not, a highly-effective anti-inflammatory drug, with CNS penetration, is able to delay worsening of disability in the upper limbs and beyond. We are not deliberately promoting unrealistic expectations; our strategy won't reverse existing disability it is simply being designed on the expectation that we may be able to keep pwMS with more advanced disease independent a little longer.
Patient-empowerment and self-management have many benefits; they improve anxiety and mood and make pwMS feel the have something to offer. They also teach pwMS to have self-compassion; i.e. extending compassion to one's self in instances of perceived inadequacy, failure, or general suffering (Wikipedia).
Fournier et al. Optimism and adaptation to chronic disease: The role of optimism in relation to self-care options of type 1 diabetes mellitus, rheumatoid arthritis and multiple sclerosis. Br J Health Psychol. 2002 Nov;7(Part 4):409-432.
OBJECTIVES: To determine the role of optimistic beliefs in adaptation processes of three chronic diseases different in controllability by self-care. It was expected that optimism towards the future would relate to adaptation independently of the controllability of disease. Optimism regarding one's coping ability should be beneficial in controllable diseases. Unrealistic optimism was expected to be beneficial in uncontrollable disease.
DESIGN: The cross-sectional design involved 104 patients with type 1 diabetes, 95 patients with rheumatoid arthritis and 98 patients with multiple sclerosis, recruited via their physician at the out-patient department of five hospitals.
METHOD: Confirmatory Factor Analysis (LISREL) was employed to confirm a three-dimensional approach of optimism: outcome expectancies, efficacy expectancies and unrealistic thinking. Multi-sample analysis by path modelling was used to examine whether the relationship of the three optimistic beliefs with coping (CISS-21), depression and anxiety (HADS), and physical functioning (SF-36) differs with the controllability based on the self-care options of chronic disease.
RESULTS: These show that when chronic disease must be controlled by self-care, physical health depends more strongly on positive efficacy expectancies. In contrast, when self-care options for controlling chronic disease are limited, physical health depends more strongly on positive unrealistic thinking and relates negatively to positive efficacy expectancies. The impact of the three optimistic beliefs on mental health is independent of the controllability by self-care.
CONCLUSION: Optimistic beliefs are differently beneficial for physical health dependent on the controllability of chronic disease. Unrealistic beliefs are helpful when patients are confronted with moderately to largely uncontrollable disease where self-care options are limited, in contrast to positive efficacy expectancies that are helpful when patients deal with largely controllable disease where self-care is required.
Labels: #ClinicSpeak, #ThinkHand, patient activation, patient-engagement, self-compassion, self-management