Over this past year, we have experienced an unnatural withdrawal from society. Avoidance of public places limited social interactions, isolation, quarantine, and in some countries, a complete lockdown of social and economic life. Inevitably, perpetuated feelings of loneliness, uncertainty, and loss of control during this time have taken a toll on mental health and well-being of many around the globe. If true for the general population, this phenomenon hits harder for those living with multiple sclerosis.
A chronic, progressive disease of the central nervous system, MS affects more than 2.2 million people worldwide. While each person experiences an entirely unique version of the condition, one common theme faced by all is the loss of connections. In a literal sense, this denotes the disrupted synaptic connections of the brain with the rest of the body as the immune system attacks myelin, the protective sheath that covers our nerves. But beyond the physical manifestation, loss of connections encapsulates the feeling of loneliness – an empty, hollow sensation that prevails in most people affected by MS. Over 50% of MS patients report frequent feelings of loneliness - 95% of whom experience psychiatric comorbidities, among which depression and anxiety disorders are most common.
Word-cloud visualization of responses of patients with MS asked to describe their feelings about the impact of COVID-19 on their life. (Motolese, Francesco et al. “The Psychological Impact of COVID-19 Pandemic on People With Multiple Sclerosis.” Frontiers in neurology vol. 11 580507. 30 Oct. 2020)
As COVID-19 continues to spread across the globe, people with MS experienced significant disruption to their management of the disease, with many health‐related appointments being cancelled, difficulties in continuing psychotherapy, and uncertainty about individual risk. The lack of social support during quarantine and inability to attend cognitive and physical rehabilitation makes patients all the more susceptible to the detrimental effects of stress and dramatically aggravates the damaging loss of connections.
As a society, we must recognize the burdens of MS, especially at this time of radical uncertainty and enhanced vulnerability. As is often the case with those who suffer from chronic illness, what presents on the surface is nothing like the turbulence behind it. We need to acknowledge the struggle beyond what we can see and challenge the barriers that leave people affected by MS feeling lonely and socially isolated.
Reach out to your local MS community or someone you know affected by MS to offer your support and connection.
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