Emotional struggle and loss for long Covid sufferers

“This experience has made me realise I’m actually not invincible, and I get sick quite a lot now because of long Covid… So yeah, people are much more vulnerable than we think.”
CNC study member discussing her long Covid experience

New research based on CNC, and five other studies following people of different generations, has highlighted the emotional toll of experiencing long Covid. Sufferers reported experiencing disruption in identity, difficulties planning for the future, and a loss of a sense of self.

What is long Covid?

Long Covid is a long-term health condition which can result from a Covid-19 infection. The most common symptoms that sufferers report include fatigue, brain fog, breathlessness, pain, and loss of smell, taste and sight. It can also cause more serious damage to the lungs, heart and kidneys.

Speaking to 80 people, including CNC participants, researchers examined the impact of living with this chronic physical health condition on people’s sense of identity. They found that long Covid can disrupt people’s sense of self, changing how they see their place in the world and leading to feelings of loss.

What we asked you

During the Covid-19 pandemic, we carried out three online surveys to find out about how Covid-19 was affecting your lives. This included asking you if you had experienced long Covid symptoms.

We asked some of you who had identified as suffering from long Covid to take part in some additional in-depth research, conducted by a team at UCL and the University of York.

These researchers conducted interviews with those of you who agreed to participate. They asked questions about how your illness started, how your symptoms impacted your day-to-day lives, and how long Covid had changed you.

What the research found

Long Covid sufferers reported facing different types of personal challenges. These included:

• changes to sense of self
• difficulties in creating a new identity
• disconnection from past lives and your future
• emotional pain related to not being able to participate fully in life.

Long Covid disrupts normal life as symptoms stop people from doing the things they used to. Younger people noted that it had a negative effect on their previously busy social lives, work and education.

As long Covid is a relatively new illness, scientists do not yet understand how it works or how long the illness could last.

The researchers noted that it is important for long Covid sufferers to construct new stories of their lives that include their identity as someone living with chronic illness.

“It’s definitely made me slow down about life a lot more. I think there’s a lot of pressure these days on young people to do lots of things and do it in a certain order, and sometimes you need to adjust your life so that you can do it in the way that you can. Even though I’ve been forced to do that, it’s really given me a different perspective on life.”

CNC study member

Why this research matters

Thanks to your evidence, researchers are improving their understanding of what it is like to live with long Covid. This information can help create supportive measures that can improve the lives of those experiencing the condition.

Read the full research report

‘I am just a shadow of who I used to be’—Exploring existential loss of identity among people living with chronic conditions of Long COVID was published in Sociology of Health & Illness in June 2023.