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.
Awareness and acceptance.
To live well, patients need to understand both the known and unknown aspects of MS and be prepared for the best and the worst. Researchers suggest that patients should be encouraged to accept and live with the disease, get on with life, be socially active, have projects etc., while being made aware that some aspects of MS cannot be avoided or solved with currently available therapies.
Inability to work and social isolation.
Just as MS can affect physical abilities, emotional well-being, and cognitive function, it can also affect one’s ability to maintain employment and engage socially. Your physician may fail to ask if MS is affecting your ability to stay active so you need to be proactive and discuss these issues so that you can be referred to professionals who are skilled in helping you stay involved in your community.
Relationship issues and family dynamics.
MS can negatively affect life plans such as work, relationships, and family planning; and feelings of anger, denial and fear are not limited to the patient but are also experienced by the family. It is important that providers engage with the patient’s family and provide information about MS and what can be expected over time. This may help to reduce feelings of frustration and guilt which can impact QoL. It is very helpful to bring family members and caregivers to appointments to allow for greater understanding and participation.
Researchers have developed a collaborative family-centered intervention model for patients with newly diagnosed MS. Key features include sharing the ‘illness story’ followed by a psycho-educational component in which families are provided with information about the medical aspects of MS, details of evidence-based health promotion practices, and guidance based on the experiences of other families in the same situation. Further research may refine this approach aimed at improving family’s QoL.
For more information on Quality of Life and MS:
Lysandropoulos AP, Havrdova E. ‘Hidden’ factors influencing quality of life in patients with multiple sclerosis. Eur J Neurol. 2015 Oct;22 Suppl 2:28-33. doi: 10.1111/ene.12801.
Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.