When COVID-19 first entered our lives, we were told the recovery period for people with milder symptoms was between seven and 14 days.

But the list of symptoms and complications is growing, with some trapped at home suffering weeks of fluctuating illness.

RAZOR's Emma Keeling has spoken to sufferers to find out how they're coping – and the vital role community is playing in helping to fill the information gap about the virus.

COVID-19 sufferer Paul Garner told her about his symptoms. "Suddenly, it crept up on me: very severe exhaustion," he said. "I found I could barely stand, I had this episode where I went to bed with a tremendous headache and tremendous palpitations and my heart was beating rapidly – still no temperature... 

"It's so frightening in the way that it comes at you and how it vanishes for a little bit – 'I'm OK at the moment' – and then comes back again. It's really frightening." 

Extended recovery time

The median time for recovery for most mild COVID-19 cases is around 14 days, but research from King's College London reveals that one in 10 suffer symptoms for over three weeks, while one in 20 suffer symptoms for a month or more. 

Fiona Lowenstein, the founder of Body Politic support group, said that she expected to quickly recover because she is young and that has been her experience with viruses in the past. 

"My recovery process was very long," she said. "New symptoms popped up and were cycling on and off. It soon became clear that the healing process, for me at least, was very different from what I had been told to expect."

When asked if she was still experiencing symptoms, Lowenstein said that even though she first experienced shortness of breath in early March, she had a week a couples of weeks ago when she was still experiencing "really intense chills and sweats and fatigue and headaches" after having a week of "feeling great." 

Lowenstein said that she is one of many people that felt well for a while and then would experience symptoms of the virus. 

Understanding the symptoms

Researchers from the University of Oxford and City, University of London, have reviewed 54 early patient studies, mostly from China, to help understand the symptoms and characteristics of the virus. 

But according to Charitini Stavropolou, a scientist at City, University of London, the majority of tests and analysis are being done on patients that were hospitalized for their symptoms – meaning evidence on the duration of symptoms is still inconclusive, as there have not been tests on people in the community. 

"Mainly for data collection issues, it's easier to collect this data in patients that are in hospital because we didn't test the general public as frequently as we are doing now," said Stavropolou. 

"Now as we are progressing and we have much more evidence and collective evidence on the symptoms, more evidence will follow and help us understand how long the symptoms may last for."

Lack of online support

Lowenstein also said that when suffering with the symptoms of COVID-19, there was a complete lack of information on the internet for those going through the virus. This prompted her to start the Body Politic COVID-19 support group. 

"As I started to share my story on social media, I heard from hundreds of other coronavirus survivors and people living with the virus who felt similarly that there was a lack of online resources and community for people who are sick. "

Lowenstein said that whilst there are an abundance of memes about the virus and how to not get sick, there is little consideration that the person reading it might actually be sick and suffering from COVID-19 themselves. 

The range of symptoms and their longevity is complicated, and research so far suggests that experiences are different for everyone. 

"We all need to be aware that there's a whole sort of menu of things that can happen to you at different times and for different lengths of time," said Garner. 

He also stressed that employers in particular need to be considerate of these complications. 

"I've seen people saying on some of the self-help pages 'My employer said I'm over 14 days – it can't be, I've got to go back to work.' Here they are at 30 or 40 days, still feeling unwell and having the disease coming back. 

"Employers themselves, and communities and others really do need to understand the intermittent nature of this disease." 

Check out The Pandemic Playbook, CGTN Europe's major investigation into the lessons learned from COVID-19