“Let Me Be a Meaningful Part in the Outside World”: A Caring Perspective on Long-Term Rheumatic Pain and Fear-Avoidance Beliefs in Relation to Body Awareness and Physical Activities

In Marc A. Russo, Joletta Belton, Bronwyn Lennox Thompson, Smadar Bustan, Marie Crowe, Deb Gillon, Cate McCall, Jennifer Jordan, James E. Eubanks, Michael E. Farrell, Brandon S. Barndt, Chandler L. Bolles, Maria Vanushkina, James W. Atchison, Helena Lööf, Christopher J. Graham, Shona L. Brown, Andrew W. Horne, Laura Whitburn, Lester Jones, Colleen Johnston-Devin, Florin Oprescu, Marion Gray, Sara E. Appleyard, Chris Clarke, Zehra Gok Metin, John Quintner, Melanie Galbraith, Milton Cohen, Emma Borg, Nathaniel Hansen, Tim Salomons & Grant Duncan (eds.), Meanings of Pain: Volume 2: Common Types of Pain and Language. Springer Verlag. pp. 103-116 (2019)
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Abstract

Pain is a key outcome measure in persons with rheumatoid arthritis or psoriatic arthritis. Improving physical and social functioning is an important treatment goal in patients with RA or PsA. High self-rated pain is linked to elevated fear-avoidance beliefs for engaging in physical activity. Some research has demonstrated that when people’s attitudes and beliefs towards pain are negative, they often have elevated levels of body awareness. Many persons with moderate to severe self-rated rheumatic pain report a desire to be part of a wider social and active context, which is perceived to be a source of positive energy and meaning in life. Patients have suggested that physical activities can mediate pain reduction and a distraction from it. During periods of solitude or episodes of sedentary behaviour, inner bodily attention in some patients with RA or PsA is often directed towards the “problematic body” and self. The perceived “untrustworthy body” has to deal with many bodily memories and emotions. Contemplating the past may interrupt a person’s ability to live life and trying to determine a future life with an unreliable body presents concerns for future consequences. This behavioural pattern can lead to maintained negative fear-avoidant behaviour and a more inactive life-style, resulting in new negative existential meanings of loss and helplessness. Despite suffering from rheumatic pain in this way, these patients point out their desire to participate in a wider social and active context without being subject to any form of discrimination, which is perceived as the main and new source of positive energy and meaning in life.Clinical Implications: There is a common meaning of bodily intrusion and threat in persons with long-term rheumatic pain. Registered nurses can play a crucial role by helping their patients identify new understandings and cognitive meanings in relation to long-term rheumatic pain. Living a meaningful life in the active outside world is paramount for improving and maintaining general health and wellbeing in persons with RA and PsA. A sedentary lifestyle together with long periods of solitude can lead to additional health problems and negative meanings.

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