Long Covid: A different model of recovery?
During both my own recovery journey, and my research with others who have made a degree of recovery from long covid, one thing became increasingly clear to me: that recovery from Long Covid challenges our common approach to illness and recovery, as a healthcare system, a society, and as individuals.
I’ve termed one of the common stages of recovery many of my interviewees went through ‘Post-infection stasis.’ This is the period after the covid-19 infection when we struggle to get better, try all the things that would usually help us recover from illness - but just don’t get better. Our usual model of recovery doesn’t work. This is an extremely confusing and disorienting time. Worse still, those things that normally help recovery (going out for a walk, say) can make the condition significantly worse.
‘All these old habits and patterns that I had of how to recover from something, they were all wrong. And they probably caused me to have Long Covid, by going back to activity too soon.’ - interviewee with Long Covid
Some of us also received advice from healthcare professionals based on the usual medical models of recovery. For many years, and to the detriment of many people with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), graded exercise was wrongly seen as an appropriate response to chronic fatigue conditions. On the surface, it seems to make sense to gradually increase our level of activity, and this approach works in rehabilitation from many conditions. However, it doesn’t work for us. In the early days of Long Covid, many of us were told by GPs to exercise in this way - and then found our condition worsening as a result, as post-exertional malaise (PEM) kicked in.
It is difficult for a medical system built around the model of ‘diagnosis —> prescription of treatment/medication —> cure’ to respond to Long Covid - a condition that currently has no universally effective medication and no ‘cure’. The system is not set up to support us over recovery timescales that are often years rather than months. Many of us find ourselves falling through the gaps between services, in a system that just does not know how to help us. Many of us feel forgotten and are living lives of quiet, deep struggle.
Here in the UK, we live in a society that often celebrates setting and striving towards goals, and can see rest and illness as weakness. A condition that prevents the ability to put ‘mind over matter,’ to push through and achieve, is highly socially stigmatised. Our condition can often be psychologised - put down to mental health conditions like depression or anxiety, rather than the real physiological causes. Many of us with Long Covid struggle with the need for long-term rest that it entails. It deeply challenges our sense of ourselves - whether as someone who is a high achiever, the life and soul of the party, or who prioritises others’ needs over our own. For a while, these things about ourselves are no longer true, and we can’t make them true through will power.
‘Mentally, I really suffered with being ill. I was feeling really depressed and quite anxious… Crying at times. Thinking no one understands me and I'm, like, some sort of freak. I felt like I'm letting people down.’ - interviewee with Long Covid
One of the things that interviewees most appreciated about the local Post-Covid Clinic was that staff had learned and integrated a different model of recovery into their support. Alongside referrals for medical tests and specialist healthcare support, this included: longer-term support; emotional support and validation; breathing and relaxation techniques; and offering hope that recovery is possible.
It is essential that clinical research continues, so that we can gain a deeper understanding of the mechanisms behind Long Covid, and find effective treatments. But with our current state of knowledge, recovery from Long Covid requires us to think differently:
As individuals, it requires willingness to engage with a model of recovery that we’re not used to (including rest, accepting long timescales, and engagement with mind-body approaches).
As professionals, it requires support that is longer-term, person-centred and personalised, and includes mind-body approaches.
This approach will benefit those of us with Long Covid, and also the many people living with long term conditions in the UK.