The recovery journey

7. Reinfections, relapses and other challenges

‘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.