Scleroderma: the relationship of psychosocial stress and levels of compassion, to psychological injury, age of onset and severity of disease symptoms

Scleroderma has been studied extensively with much known about onset and progression, and the relationship with psychological aspects such as coping, depression and anxiety. However, there is limited knowledge about how the development and progression of scleroderma is related to personal stress experienced at an early age (psychological injury) and the emotional regulation strategies such as self-compassion used to help in coping. This may be important information for the treatment of scleroderma and related illnesses. This thesis addressed this relationship over more than ten specific studies that examined how different forms of scleroderma (diffuse and limited sclerosis), different symptoms (such as Raynaud’s phenomenon the first sign of scleroderma onset) and age of onset were linked to psychosocial experiences; particularly examining stresses experienced, and levels of selfcompassion or kindness to oneself (self-kindness). The research questions raised were whether psychosocial variables involving early interpersonal experiences (early life stress and insecure adult attachment) and emotion regulation strategies (levels of self-compassion and emotional suppression), would be related to physiological responses (levels of hyper-arousal) in scleroderma symptoms and onset. A within groups and between groups design was utilized. Three major different samples were recruited to enable attention specifically and first, to individuals with scleroderma, and then, following the scleroderma studies and to enable comparisons, second, to individuals from a general community sample (‘normal population’), and third and finally, to individuals with breast cancer. When comparing groups it was hypothesised that individuals from the scleroderma sample would report lower positive early life experiences and levels of selfcompassion in their emotional regulation, than the community and breast cancer samples. Participants (129) in the first study were recruited from national and international scleroderma organisations and invited to complete either an online or hard copy survey. The findings supported the hypotheses and revealed that negative PSYCHOSOCIAL STRESS SELF-COMPASSION & SCLERODERMA 3 nurturing experiences in childhood (low in early memories of warmth and safety: EMWS) predicted, elevated pain in scleroderma, depression and anxiety; and was significantly greater when comparing groups for those with more severe skin involvement (a general gauge of overall disease severity) and those with Raynaud’s phenomenon, when compared to those without this condition. In addition in this first study (of scleroderma) insecure adult attachment with significant others also predicted elevated pain, and depression and greater skin severity when comparing levels of skin involvement. Difference between the major subsets of scleroderma (diffuse and limited sclerosis) were found for pain: with EMWS and dismissive attachment, being significantly related to elevated pain for limited sclerosis; whereas emotional suppression was significant for diffuse sclerosis. Emotional suppression an emotion regulation strategy was also significantly related to anxiety and greater skin severity when comparing levels of skin involvement. Hyper-arousal predicted more severe Raynaud’s phenomenon, and was related to level of scleroderma disability, the early age diagnosis with scleroderma, and low self-compassion. Other relationships with attention to whether selfcompassion helped as a strategy for coping with scleroderma, demonstrated that low selfcompassion was significantly related to an earlier onset of scleroderma and Raynaud’s (diagnosed up to decades before the onset of scleroderma itself) and predicted more severe Raynaud’s symptoms. Low self-compassion (low self-kindness) and hyper-arousal (reactive) predicted more severe Raynaud’s phenomenon for diffuse sclerosis; whereas greater selfjudgment (a subscale of self-compassion) was significantly related to elevated Raynaud’s for the limited sclerosis group. Results generally supported the hypotheses and demonstrated that early life stress involving experiences low in warmth and safety, an insecure attachment style, inadequate emotion regulation/coping strategies (low self-compassion and suppression) and hyper-arousal, predicted or were associated with psychological or physiological variables such as depression, anxiety, pain, scleroderma and Raynaud’s symptoms and onset. PSYCHOSOCIAL STRESS SELF-COMPASSION & SCLERODERMA 4 Participants in the second and third comparison studies completed an online or hard copy survey and were recruited through breast cancer organisations and community organisations such as sporting clubs; and also included university students. Community members mainly from South East Queensland totalling 106 people, were recruited for the community study. Breast cancer organisations from around the world were involved in seeking participants for the study with 31 involved in the final numbers. Results suggested similarities and differences between groups; with significantly greater early childhood stress and lower self-compassion reported by individuals diagnosed with scleroderma when compared to community participants and significantly lower self-compassion for scleroderma participants when compared to breast cancer participants. Some similarities were found between illness groups. For depression, low self-compassion was significant for both groups; however, lower EMWS (scleroderma) and dismissive attachment (breast cancer) also predicted depression for the respective groups. For anxiety, emotional suppression was a significant predictor in both the scleroderma and breast cancer groups; however, lower EMWS, elevated pain and hyperarousal also predicted anxiety for the scleroderma group, but not the breast cancer sample. Demonstrating that EMWS was more likely to predict experiences of depression and anxiety for scleroderma participants than breast cancer participants. No other variables were significant for breast cancer. Findings generally supported the hypotheses and demonstrated that an inability to engage compassionate soothing emotion regulation experiences to reduce arousal, was likely to increase the vulnerability of scleroderma and breast cancer participants (to developing conditions such as depression). Differences between those with scleroderma and breast cancer were also found for the variables that predicted age diagnosed with the illness. Greater hyper-arousal predicted an earlier onset of scleroderma; whereas greater self-compassion (which was predicted by low hyper-arousal) predicted a later diagnosis of breast cancer. Findings demonstrated a more PSYCHOSOCIAL STRESS SELF-COMPASSION & SCLERODERMA 5 positive outcome for breast cancer participants who reported a greater capacity to engage in self-compassion as an emotion regulation strategy to reduce arousal; as results suggested this way of relating to the self was more likely to predict a later, rather than earlier onset of breast cancer. Conversely, low self-compassion was related to a diagnosis of Raynaud’s phenomenon at a younger age for individuals diagnosed with scleroderma (first study); suggesting that levels of self-compassion (e.g., high: later onset of breast cancer; low: earlier onset of Raynaud’s/scleroderma) may have consequences in relation to onset of disease. Greater early childhood stress and lower self-compassion were reported by scleroderma participants when compared to community participants and lower self-compassion was reported by scleroderma participants when compared to breast cancer participants; these experiences also predicted elevated pain, Raynaud’s symptoms and earlier onset of Raynaud’s phenomenon. Thus, in relation to scleroderma (the main focus of the study), these experiences are seen to impact on levels of arousal and the course of scleroderma, resulting in an earlier onset and exacerbation of symptoms. The findings suggest more beneficial results come from strategies that are related to lower arousal: such as greater experiences of self-compassion. Limitations include a smaller sample size for the breast cancer group than anticipated. This occurred as breast cancer organisations expressed concerns about exploring members early childhood experiences due to factors related to blame for the development of the disease. Post-hoc calculations, however, indicated adequate power in the numbers involved, allowing for confidence in the comparisons made. Further research that involves identifying levels of self-compassion and hyper-arousal when people are first diagnosed with Raynaud’s/ scleroderma and providing education and therapies that teach patients to engage in selfcompassion and arousal reduction techniques; may provide beneficial outcomes in reducing symptomology and possibly leading to an extended life expectancy (as thirty per cent of individuals diagnosed with scleroderma die within the first five years of diagnosis). PSYCHOSOCIAL STRESS SELF-COMPASSION & SCLERODERMA 6 The major contribution of this series of studies was the finding that greater selfcompassion may be a determining factor in predicting lower hyper-arousal and a later onset of disease. This study demonstrates the importance of providing individuals (children) with adequate experiences of nurturing and feelings of safety and the development of effective emotion regulation strategies such as self-compassion to reduce negative arousal. Providing children with positive nurturing experiences and the capacity to engage in self-compassion may be a protective factor for reducing arousal and delaying the onset of disease. PSYCHOSOCIAL STRESS SELF-COMPASSION & SCLERODERMA 7