Psychosocial aspects of the lived experience of multiple sclerosis: personal perspectives

‘It struck at the heart of who I thought I was’: A meta‐synthesis of the qualitative literature examining the experiences of people with multiple sclerosis

“…20,22,35,45,[48][49][50] Their MS symptoms were often referred to as 'invisible', obliging them to assert the impacts of MS on daily life and to help others understand a hidden disability. 14,20,22,[33][34][35]48,[50][51][52] Conversely, while information was welcomed by most, some described being bombarded, 17,53 inundated, 54 and overwhelmed 38 by advice and disease details. In response, some chose to manage anxiety about the future by only researching those symptoms that were of current concern to them.…”

“…These included bladder symptoms, 44 pain, 58 fatigue, 34,51,60,61 spasticity, 62 speech problems, 63 balance disturbances, 43 and cognitive and mood changes. 64 This unpredictability caused worry, 43,44,53 made it difficult to plan, 38,43,44,53,58,60 and disrupted valued roles and activities, 22,38,43,44,53,58,60,62 and everyday routines.…”

“…Managing fatigue required constant planning and pacing of tasks to accommodate the anticipated fatigue-related after effects. 12,13,31,43,49,53,60,61,66 It was described in terms of its impact on work, 20,51,53,72,77,78 social life, 20,47,51,53,[77][78][79] family life 14,20,47,51,53,54,77,78,80 and physical and psychological health. 16,18,49,78 People with MS described feelings of frustration about the limitations that fatigue imposed on their lives and the resulting loss of spontaneity.…”

“…14 Although denial of the diagnosis was experienced by some, 9,32 defiance in the sense of not letting MS and its impacts define identity, personal outlook and everyday life was most often expressed. 14,32,35,51,78 For some people with MS, initial fears surrounding dependence on aids, such as wheelchairs, were replaced with acceptance and relief, as they facilitated adaptation to certain tasks, and assisted in maintaining independence. 31,32,73,81 Technology and devices were valued for enabling people to stay connected to society and community, 82 follow online exercise programmes, 43 monitor activity and fitness levels, 18 and assist with daily living activities 53 and work-related tasks.…”

“…• Fatigue was described as a symptom that featured across multiple contexts of people's lives [12][13][14]16,18,20,22,31,34,35,41,43,47,[49][50][51]53,57,60,61,66,72,74,[77][78][79][80] • Preceding diagnosis 20,33,51,69 and, later, as a flag indicating relapse or progression 22,32,49 • A wide range of related physical and psychological symptoms included depression and anxiety, 18 cognitive and mood changes, 43 pain, 58 bladder and bowel dysfunction, 77 spasms, 60 mobility problems and paralysis, 22,57 numbness, pins and needles, 38 trigeminal neuralgia 32 and optic neuritis. 33 Fatigue was associated with heat sensitivity and vice versa, and had considerable impacts on people's lives 33 • Different descriptions of fatigue were used synonymously; these included being 'washed out', 65 'shut down', 61…”