Quality of Life

When an individual or a family receive a diagnosis, it is often overwhelming. The diagnosis may have come out of the blue, or an individual may have waited years to find out what caused their issues. For some not having a diagnosis can be worse as this can introduce more uncertainty. Even with a diagnosis there is still much left unknown, and the future can feel even more uncertain. The present and future impact of having a neuromuscular disease can have a significant impact on quality of life – emotional, physical, psychological as well as impacting relationships, participation, and family life.

Many individuals cope well and adapt, but at critical points, as function is lost, someone who was coping well can find their QoL affected.

It is important for individuals to seek help if they are struggling with low mood or depression. This help can be found within local services or perhaps can be accessed via specialist services. Sometimes questionnaires can be an easier way to report difficulties with coping. Clinicians may use these as a screening tool.

The relationship of QoL to functional ability is not necessarily a straightforward one. For example, as an individual struggles with walking outside or around the home, they may rate their QoL less well. As they adapt to life in wheelchair and realise it can improve their ability to keep up with friends and family, QoL may again improve. They adapt as those around them also adapt.

MDUK have published a factsheet on getting mental health support.pdf