The long covid recovery journey

‘Before Covid, my health was excellent. I just had so much energy and sense of self and agency. I did a massive amount of digging on my allotment. I was fitter in that period than I’ve been for a long time.’

Most people said they were close to their best possible health pre-Covid. Six of the ten people had long term health conditions (including asthma, lupus and adrenal insufficiency, rheumatoid arthritis, endometriosis, and mental health issues), but most were managing these. Only one person said they were not living healthily pre-Covid.

Several people said that the stress, anxiety and isolation of the pandemic had negatively affected their mental health or well-being before contracting Covid.

‘I returned to work … but I was really dizzy, I couldn't shift this. And then a couple of weeks later, my body just went, it just crashed.’

Some people had mild Covid-19 symptoms, and some had severe and frightening symptoms.

All experienced a rapid, steep decline in health following the infection, either immediately or in the following weeks or months.

‘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.’

Key features of this stage are:

• People’s old models of recovery were challenged – you do what you usually do to recover and it doesn’t work – but you keep doing it.

• Pushing through; a lack of understanding/acceptance of how ill you are and your limitations.

• Questioning and seeking to understand: what’s happening? Is this in your head?

• Stigma including shame, guilt, self-stigma, and lack of validation/understanding from others.

• Seeking support from traditional healthcare providers/system, and often not receiving adequate support.

• Trying different things to get better.

• Isolation.

• Loss, and sense of identity/sense of self challenged.

• Challenges and anxieties around money and work.

• Usual coping/self-care strategies aren’t available because of the condition (exercise, social connection, work, hobbies, etc).

‘I did have suicidal thoughts [...] I had such bad anxiety, I honestly thought I was going to die, like literally. Literally laid in bed, I thought this is it, I'm done, I'm not going to get better. And if this is my life now, I don't want to be here.’

Many people described a crisis. This stage typically involved:

• Not getting better and the loss of hope of getting better.

• Decline in mental health - depression was common and several people said they had had had suicidal thoughts.

• Feelings of loss and grief which could be overwhelming.

• Trauma – including the trauma of not being believed/not receiving support; of both acute and chronic illness; of the pandemic; and, for some, the re-emergence of past/childhood trauma.

• Crises often occurred before people received specialist support from the Long Covid clinic and after other support (e.g. GP, other non-Covid specialists) had not met their needs – indicating the importance both of the quality of support received from the first point of contact and of quick referral to specialist support.

• People from minoritised groups are less likely to access specialist support, so may be more at risk of reaching/remaining at this crisis point.

‘Even though it wasn't great, and felt like very slow progress, I feel like every week I had a plan, I could walk a little bit better, and I was having coffee, a lot of people were taking me out. I always tried to make sure that I had something to look forward to every day.’

The turning point or emergence from this crisis was different for everyone. For some it was a notable shift; for others, a slow, gradual change.

Some people could identify a clear change that precipitated a turning point for them. Examples include:

• Receiving support 

• New medication 

• Shift in mindset 

• New activity 

• Learning new tools

Others said they had experienced a series of small changes that went hand in hand with a slow improvement.

This is the period when people are seeing improvements in their health, usually slow, and often with ups and downs.

‘I found it really hard to restrain myself [from exercising] and I think there have been times where I've not done myself any favours by pushing too hard.’ 

Reinfections and relapses

Reinfections with Covid-19 did not always cause big setbacks – most people recovered from these fairly quickly.

Relapses and dips could be triggered by:

• Stress - emotional, work-related or other, including bereavement.

• Overdoing things physically.

• Returning to work too soon/for too many hours.

• Another Covid-19 infection.

• Other health issues/conditions.

• Other factors (e.g. weather/seasons).

There are likely to be physiological processes that we don’t yet understand that contribute to the relapsing-remitting nature of Long Covid.

Other challenges in recovery included:

• The frustration of not being fully recovered - you may seem better to others but are still unable to do the things that you enjoy and that made you you - (e.g. exercise, work or socialising). You may have to make sacrifices (e.g. you can work but not be able to do much else/you can socialise but may need days to recover). Healthcare professionals and loved ones may not understand this.

• Dealing with fear of reinfection/relapse.

• Challenges to relationships – the strain on partners/caregivers can last long into and potentially beyond recovery. This can be because of the mental and emotional impact of an often-traumatic period, but also because the person with Long Covid may now have a changed lifestyle, values and priorities.

• The loss of characteristics and abilities that were central to your previous sense of identity.

• Illness fatigue, as experienced by both the person with Long Covid and the people in their lives. For individuals, the boredom and frustration of having to continue to deal with and self-manage illness after many years. And, for some, the experience of friends and family becoming frustrated, emotionally burnt-out, or no longer acknowledging the continued existence of the condition, which could increase feelings of guilt and isolation in the person with the condition.

• Ill health – one interviewee was diagnosed with cancer. Another sprained their ankle and was at another time hospitalized for pneumonia. These things set back both of their Long Covid recoveries.

‘So now I'm running 5k, I'm going swimming once a week, and I'm out dog walking. So probably I'm healthier than I was before I got COVID, but in a different way. I'm so much more relaxed than I used to be. My perception of what's important has totally changed.’

Not all of the people we spoke to felt they had reached or could reflect on life post-Long Covid. Those who did described a changed life, with features including:

• Some things are better – e.g. a more balanced life, more tools for managing stress, anxiety and other challenges of life.

• New priorities, including self-care.

• A new sense of identify – letting go of some old aspects of ‘who I was’, and opening up to new possibilities.

• Reduced activity levels and more rest – no longer pushing yourself either in or outside work.

Getting to this point usually required processing feelings of loss and grief.