Perhaps the most important element in the Health-related Quality of Life concept, the Perception of Well-Being, is rooted in the psychosocial aspects of the disease. This includes the impact of symptoms, disease progression, and how patients view themselves in various life settings. Are they fulfilled and living up to the roles expected of them? Is there a feeling of happiness inside despite obstacles, or one of gloom and despair?
Consider these wise words from our MS community members:
“I think quality of life is in the eye of the beholder, as individual as MS itself.” - Mandy
“I believe it is important to be able to pursue the work and social activities that one desires, and I would be lying if I said that my quality of life has not been affected since I had to leave work.” - Denise
“For me when you look at a person’s quality of life, you must look at the whole person. Inside and out, not being able to walk because of spasticity may have done a real self esteem job on that person, not being able to function all day because of fatigue issues. All of these issues would need to be addressed. It just depends on the person.” - Sherry (momdukes)
It is important to understand that the perception of well-being often changes over time and across one’s lifespan. Individuals may adjust their internal standards, their values, and the meaning of quality of life in response to significant health-related challenges
When a patient is newly diagnosed, he/she may be overwhelmed with fear and anxiety with innumerable unanswerable questions of the future. In this situation, psychosocial interventions such as group therapy and educational sessions have been shown to help MS patients adjust to their illness.
At the neurology clinic I attend, the MS nurse and head neurologist offer a 10-month “Newly Diagnosed” series of meetings. Each session is designed to cover a particular topic related to MS and offers time to ask questions, compare notes with other patients, and allow caregivers to gain support as well. It was the very best experience I had to help carry me through the first year post-diagnosis which can often be the toughest emotionally.
Read this post in its entirety:
Quality of Life for MS Patients: The Psychosocial Aspects of Chronic Disease (Part Four in Series)