The lived experience of relapsing multiple sclerosis: a phenomenological study

Multiple sclerosis (MS) is a demyelinating disease of the central nervous system that is well known but poorly understood by the medical and nursing community as well as the general public. The myriad neurological symptoms result from an autoimmune attack on the insulating myelin of the nerves which cause a disruption of nerve impulses in the brain and spinal cord. MS most often affects young adults and may be broadly categorized as either a relapsing or a chronic progressive disease course. Until recently, research has focused on the progressive form of MS though it accounts for less than half of the cases. People who are diagnosed with relapsing MS are cared for in the same way as those with the debilitating progressive form. Relapsing MS affects individuals periodically with exacerbations from which they often recover completely, whereas chronic MS results in a progressive functional deterioration. People with relapsing MS are not given a realistic prediction of what to expect in their future nor are they left with any hope for normalcy in their lives. The purpose of this study was to provide a description of the lived experience of people who have relapsing MS. To answer the question, "What is the lived experience of people with relapsing multiple sclerosis?" this study was conducted using hermeneutic phenomenology. A sample of 10 patients with relapsing MS was interviewed over a seven month period. Interviews began with the question, "What is it like for you living with multiple sclerosis?" The interviews were tape recorded and transcribed verbatim. Data were analyzed using the Colaizzi method of hermeneutic phenomenology. Themes that emerged from the data were combined and abstracted into twelve dimensions that described the lived experience of people with relapsing MS. Participants' social networks served as either positive or negative influences in their adjustment process and led to conflicts for some. Coping with recurrent symptoms and social situations related to the MS was facilitated by maintaining control and a sense of hope. Most expressed a sense of relief with diagnosis because they had secretly feared their symptoms were a result of a fatal illness or psychological instability. Uncertainty surfaced as a major theme due to the unpredictability of relapsing MS. Participants also experienced fear and loss. Getting to know MS was an integral part of the experience often made difficult by concealment of facts. Participants experienced acts of revealing and concealing throughout their illness process and often attempted to conceal their illness from a society that did not understand. Nurses should be aware of the relapsing MS experience when providing care and teaching to patients and families with MS. The nurse should also reflect on the importance of maintaining hope and open communication.