Understanding unexpected courses of multiple sclerosis among patients using complementary and alternative medicine: A travel from recipient to explorer

Abstract

Complementary and alternative medicine (CAM) is frequently used by patients with multiple sclerosis (MS). Some MS patients experience unexpected improvements of symptoms, which they relate to their use of CAM. The aim of this study was to obtain knowledge and develop understandings of such self-defined unexpected improvement of MS symptoms. Two cases were constructed based on documents and 12 qualitative interviews. Our aim was not to make generalisations from the cases, but to transfer knowledge as working hypotheses. We identified four health-related change processes: the process of losing bodily competence; the process of developing responsibility; the process of taking control; and the process of choosing CAM. The patients explained unexpected improvements in their MS symptoms as results of their own efforts including their choice and use of CAM. In our theoretical interpretations, we found the patients’ redefinition of history, the concept of treatment and the importance of conventional health care to be essential, and leading to a change of patients’ position towards conventional health care from recipients to explorers. The explorers can be perceived as boundary walkers reflecting limitations within the conventional health care system and as initiators regarding what MS patients find useful in CAM.

• Chronic illness
• illness experience
• complementary and alternative medicine
• multiple sclerosis
• coping
• Norway

Acknowledgements

With gratitude to the patients, the Danish Multiple Sclerosis Society, the Norwegian Multiple Sclerosis Society, the Foundation for Danish–Norwegian Cooperation and to Brit J. Drageset, NAFKAM.

Notes

1. The Registry of Exceptional Courses of Disease has established collaboration with nine patient associations in Norway and Denmark: The Danish Cancer Society, the Danish ME/CFS Association, the Danish Multiple Sclerosis Society, the Danish Rheumatism Association, the Norwegian Asthma and Allergy Association, the Norwegian Cancer Society, the Norwegian ME Association, the Norwegian Multiple Sclerosis Society and the Norwegian Rheumatism Association