Having a neuromuscular condition presents a lot of challenges: that goes without saying. But for all of the interventions, treatments and clinical concerns, one of the difficulties which often goes unaddressed is mental health. When people say you have ‘good mental health’, they often expect you to have a positive outlook on life, and to be feeling fine most days. When you have a neuromuscular condition (or indeed, any kind of life-limiting illness), ideas like this become complicated.
This is something Dr Valentina Baldini and a number of other scientists involved in neuroscience (who will be known as ‘Baldini et al’ from now on) recognised in their work. In ‘The Psychological Burden of Neuromuscular Diseases: A Narrative Review of Anxiety, Depression, Coping, and Quality of Life’, Baldini et al. collected a huge amount of literature from the past twenty-five years all about the psychological health of people with neuromuscular conditions. This includes symptoms of anxiety, depression, the coping strategies used, and quality of life. These researchers examined a number of original research articles, studies and reviews which included psychological assessments in patients with neuromuscular conditions. Their goal was to draw conclusions about neuromuscular patients and their psychological health.
Across the literature they reviewed, Baldini et al. discovered that symptoms of anxiety and depression are common for people with neuromuscular conditions. This is true regardless of diagnosis, and comes with a poorer self-reported quality of life, as well as worse rates of engaging with treatment and/or rehabilitation. However, most care given to people with neuromuscular conditions focuses on slowing disease progression and managing symptoms; psychological wellbeing is rarely ever addressed, or even considered an unavoidable consequence. Because of this, people with neuromuscular conditions can suffer from ‘invisible burdens’, including social withdrawal and comparing yourself to your peers.
It’s understandable why, with all of these difficulties, people may develop poor mental health or try to cope as best they can. Coping strategies are ways of handling stress and difficult situations, and can be broken down into two categories:
- Adaptive coping strategies: ways of dealing with stress which help reframe difficulties in a positive way. This includes acceptance, problem-solving, etc.
- Maladaptive coping strategies: ways of dealing with stress which compound negative feelings and hopelessness. This includes denial, emotional disengagement, etc.
This literature review found that adaptive coping strategies can decrease psychological distress for people with neuromuscular conditions. On the opposite side, the use of maladaptive coping strategies can increase symptoms of anxiety and depression, and end up making people rate their quality of life more poorly. Despite this, Baldini et al. found that psychological care is rarely integrated alongside neuromuscular support. There is limited awareness among clinicians about the mental health impact of living with a neuromuscular condition, and less training in this area. In addition, clinicians may misinterpret symptoms of worsening mental health for disease progression, or discount them in favour of managing the neuromuscular condition.
Time and again, the researchers discovered that poor mental health isn’t just the result of having a neuromuscular condition. Anxiety, depression and other difficulties can cause people to engage less with treatment and social activities, in turn making their symptoms worse. The evidence collected by Baldini et al. is clear: the assessment and treatment of mental health has a direct and positive impact on the quality of life of people with neuromuscular conditions. It isn’t just a matter of screening for mental health difficulties and treating them separately; it is likely that the specific experience of having a neuromuscular condition has a unique impact on psychological health.
This is why it is the view of the researchers (and Pathfinders) that the integration of mental health assessment and support into neuromuscular care can have a transformative effect on people’s quality of life. In the long-term, integrating mental health professionals into neuromuscular teams and adopting patient-centred care would improve the lives of people with neuromuscular conditions. Baldini et al put it eloquently in their paper: neuromuscular care should ‘aim to alleviate distress, but also to preserve dignity, autonomy and social belonging.’ The neuromuscular community deserves to have its mental health supported the same way as anyone else, and a neuromuscular condition should not overshadow care which improves quality of life.
Part of the work we do at Pathfinders involves demystifying research which affects the neuromuscular community. Do you have a research paper or topic you’d like to see covered? If so, get in contact with us at quinn@pathfindersalliance.org.uk.
Written by Quinn Clark
References:
Baldini, V., Varallo, G., Nuredini, A., Tupler, R., Plazzi, G., De Ronchi, D., Pera, M. C., Liguori, R., Rubichi, S., & Scorza, M. (2025). The Psychological Burden of Neuromuscular Diseases: A Narrative Review of Anxiety, Depression, Coping, and Quality of Life. Muscles, 4(4), 59. https://doi.org/10.3390/muscles4040059