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 Her mind fills with fears about what kind of damage might have been
done to her heart, lungs and brain when she suffered what is
classified as a "mild" case of COVID-19 more than five months ago -
and she's terrified it might happen again.
"I was absolutely, completely destroyed by this illness," she told
Reuters. "My life has completely changed. I'm basically confined to
a kilometre from my house and back - because that's as far as I can
walk."
Back in March, she says, she felt more individual control over her
health. She was reassured in part by messages that the vast majority
of cases are mild, and that good infection control, hand hygiene and
social distancing would reduce the risk of contracting COVID-19.
Now, however, she feels as though "the threat is everywhere."
Callard is one of thousands of people worldwide who are reporting a
wide range of ongoing symptoms many months after being diagnosed
with COVID-19. Some call themselves COVID "long haulers", while
others have adopted the term "long COVID" to describe their
condition.
Breathlessness, memory loss, extreme fatigue, headaches, brain fog,
muscle pain and swelling joints, are commonly described among
multiple recurring symptoms in global online patient advocacy blogs
and chatrooms.
And for many, the anxiety, depression and dread are at least as
debilitating as the physical frailties.
"That's been the pattern - relapse and remit - for so many of us,"
said Sandra Edwards, a 46-year-old Briton who now helps run a
newly-formed patient advocacy group called LongCovidSOS.
"We're in no man's land. We don't know if this is chronic or if it
will come to a point where we'll make a full recovery," she told
Reuters. "You wake up in the morning and don't know how you're going
to feel - not just day by day, but sometimes hour by hour. It slowly
chips away at you."
According to LongCovidSOS, data from a symptom tracker app devised
by King's College London scientists shows that 10% of COVID-19
patients are still unwell after three weeks, and up to 5% may
continue to be sick for months.
UNCERTAINTY
"Mentally, you feel abandoned," said Morena Colombi, a 59-year-old
from Truccazzano in the Italian province of Milan who was diagnosed
with COVID-19 in February and is still suffering symptoms. "Even the
doctors don't know how to help you."
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"Maybe one day you get better, and the next day you pay for it," she told
Reuters. "You can no longer resume your life as before and that makes you
depressed."
Til Wykes, a psychology professor at King's College London's Institute of
Psychiatry, Psychology & Neuroscience (IPPN), notes that uncertainty is a key
feature of anxiety. The unknown progression of the disease leaves doctors unsure
of how to help, and can make patients feel fearful and alone.
"For most illnesses we have an understanding about what will happen first, what
will happen next, and what to expect," she said. "The problem (with COVID) is
that the symptoms come, then seem to be abating, but then they come back again."
After the World Health Organization met groups representing long-term COVID
sufferers last month, the WHO's director general Tedros Adhanom Ghebreyesus
assured them: "We hear you loud and clear".
But he cautioned: "We still know relatively little about the long-term effects.
We only have less than eight months of experience (of the coronavirus pandemic)
to draw on."
Patients like Callard and Edwards say they recognise doctors are dealing with a
completely new disease caused by a novel virus, so can't be expected to have all
the answers. But they and mental health specialists say the psychological impact
of this unpredictability and lack of control make things worse.
Rona Moss-Morris, head of psychology at the IPPN, says evidence from previous
disease outbreaks and from studies of patients who have been in critical or
intensive care shows a significant impact on levels of anxiety, depression and
post-traumatic stress disorder (PTSD).
"And it's also very frightening for people being at home – and not in hospital -
and feeling they can barely breathe, for example," she told Reuters.
"We're hearing horror stories from people who were in that kind of situation."
(Reporting by Kate Kelland in London, with additional reporting by Angelo Amante
in Rome. Editing by Alexandra Hudson)
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