Experiences of Relapsing Remitting Multiple Sclerosis and Disease Modifying Treatment: A phenomenological inquiry

A review of the body of knowledge has provided an insightful overview of the significant strides taken in the field of multiple sclerosis. For instance, the literature has made clear the considerable impact this autoimmune disease can have on an individual and how treatment can modulate the processes that underline this condition. However, this review equally highlighted an absence of literature exploring the experiences of both relapsing-remitting multiple sclerosis and disease-modifying treatment. It is in this context that this thesis is based. That is, this thesis sets out to address this gap in theoretical and clinical practice by employing a methodology and method that would discern individual accounts on the experience of being diagnosed with relapsing-remitting multiple sclerosis and the experience of taking disease-modifying treatment.

Guided by a qualitative research design, semi-structured interviews were undertaken with six participants and analysed using Max van Manen’s hermeneutic phenomenological method. For participants diagnosed with relapsing-remitting multiple sclerosis, the analysis organised the discerned themes around four lifeworld existential elements: Bodily Interruption, Fatigue, and Psychological Distress (corporeality), Guilt and Power Imbalance (relationality), Secrecy (spatiality), and Death (temporality). Subsequent themes were discerned in relation to the experience of taking disease-modifying treatment: Body Object, Decision Dilemma, Pain, Reformulated Life, and Complementary and Alternative Medicine (corporeality) and Future Orientated (temporality). These themes, serving as navigators, discerned the manner in which a diagnosis permeated everyday living so that an individual’s experience of themselves, of others, and of the world became scientized. Equally, how this encounter with medical
terminology influenced treatment decision making and views pertaining to the future.

The discussion addressed the complexity associated to a diagnosis of relapsing-remitting multiple sclerosis (before, during and after) and provided an understanding as to why individuals supplement disease-modifying treatment with complementary and alternative medicine. With this in mind, specific recommendations were suggested: (i) clinicians should give more attention to relapsing-remitting multiple sclerosis as a relational and lived phenomenon, (ii) clinical practice should include discussions surrounding complementary and alternative medicine, and (iii) future research should be developed to the point that the principles of evidence-based disease-modifying treatment practice can be applied to complementary and alternative medicine treatment.