Why finding moments of joy is important in chronic illness
Chronic illnesses like Long COVID can be devastating as people’s lives become radically smaller, but searching out joy and positivity can have real clinical benefits.
- 3 May 2023
- 4 min read
- by Priya Joi
Singing would seem like the last activity that someone with Long COVID would want to do, given the accompanying breathlessness that often affects sufferers. Yet that is exactly what more than 2,500 people with Long COVID from across the UK have been doing. They have come together over Zoom calls organised by the English National Opera's (ENO's) Breathe programme, in which they do breathing exercises and vocal exercises such as singing.
Exhortations to “think positively” can be perceived as patronising and misinformed by people with chronic illnesses, but this is anything but frivolous. There is strong evidence that investing in emotional needs and wellbeing is just as important as paying attention to symptoms or experimenting with new treatments.
Joanna Herman, an infectious diseases consultant in London and Long COVID sufferer describes it as "a magical – and very moving – experience". Programmes such as these show the importance of initiatives that bring joy to people with chronic illness just as much as patients forums where people endlessly discuss their symptoms.
Research is now showing what scientists had suspected – that in Long COVID, the autonomic nervous system that is responsible for subconscious behaviour such as breathing, heart rate, blood pressure and digestion becomes dysregulated. Infectious disease specialist Paul Garner told Gavi he believed that autonomic dysfunction might be causing "false fatigue alarms". In a study published last year, around two-thirds of people with Long COVID had autonomic dysfunction.
Breathing and singing lullabies, as participants do in the ENO's Breathe programme, can engage the vagus nerve, calming an overstimulated system down and soothing symptoms.
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There is data to back this up. A study in The Lancet Respiratory Medicine that ran a randomised controlled trial of the Breathe programme found that participants had a 10.48 point (out of 100) reduction in breathlessness while running, compared to people who continued with usual care alone. People taking part in Breathe also experienced a 2.42 point improvement in the mental component of quality of life. The Welsh National Opera and Scottish Opera have now both started similar programmes.
Breathe is one in a long line of initiatives to help bring joy and positivity to the lives of those with a chronic illness such as Long COVID. Exhortations to "think positively" can be perceived as patronising and misinformed by people with chronic illnesses, but this is anything but frivolous.
There is strong evidence that investing in emotional needs and wellbeing is just as important as paying attention to symptoms or experimenting with new treatments. Clinically, these are called "social prescribing interventions".
The World Health Organization (WHO) describes social prescribing as "a means of connecting patients to a range of non-clinical services in the community to improve their health and well-being". A toolkit WHO published in 2022 says, "Social prescribing can help to address the underlying causes of patients' health and well-being issues, as opposed to simply treating symptoms."
Really, this is about finding moments of joy and positivity in potentially long swathes of illness; if you're suffering from fatigue, pain or other symptoms, these moments are hard-won and need to be actively sought out.
A 2017 study in Australia found that leisure activities that were rewarding and joyful "offered participants important benefits in coping with and managing illness over the long-term, including opportunities to experience greater sense of control, an alternative experience of one's body to the 'sick body'."
“I never before had an experience like this. I didn’t think things like singing could help me with my breathing and improve my recovery from Covid and it has really helped me emotionally and physically.”
– Breathe programme participants
Arguably reclaiming control through positive action is just as important as endlessly disappearing down a rabbit hole of trawling the internet to self-diagnose or treat symptoms or spending hours exchanging notes with others with the same condition.
This is not to say that making connections with others going through the same experience is not helpful, especially when symptoms are as varied as they are in Long COVID, and resolving them is still not clear in most cases.
But connection can come in many different forms, and focusing on constructive action can be incredibly valuable. As one of the Breathe programme participants said: "I never before had an experience like this. I didn't think things like singing could help me with my breathing and improve my recovery from Covid and it has really helped me emotionally and physically."