Factors that affect quality of life are not always easily visible. Here are the top non-medical issues that can impact quality of life (QoL) for those diagnosed with multiple sclerosis and their family members.
An emotional journey from the start.
The MS journal is not just a physical one, it can be an emotional one as well. Before diagnosis, there may be feelings of uncertainty and denial of symptoms. At diagnosis, patients may feel afraid, angry, wonder ‘why me?’, and become isolated. For some, receiving the label of MS can feel a burden and cause great fear in the absence of knowledge about the disease.
Understanding the disease and the disease process.
Patients need to be equipped with knowledge and coping skills to live well with MS, but doctors may be reluctant to share too much information to avoid overwhelming them. A survey study of patients and caregivers identified a desire from both groups for medical professionals to be more forthcoming with information about MS in a manner and format that is easy to understand. Patients and caregivers expressed a need to know what MS is, and what the best solution is for them personally.
Uncertainty renewed, again and again.
During the course of the disease, patients may re-experience many of the same emotions from the times of disease onset and diagnosis due to changing circumstances caused by disease activity or social challenges. Patients who visualize their most feared outcomes may have a pessimistic view of MS which in turn may amplify their symptoms and interfere with QoL.
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6 Non-Medical Issues that Affect Your Life with MS