COVID-19: Treatment a ‘postcode lottery’ says sufferer after nine months of Long Covid

Lisa is attempting to understand the causes and effects of her condition. Pic: Lisa

After almost a year of the new normal, the enormity of the effects of the pandemic are setting in for many of us. Eastlondonlines is documenting the many facets of the impact of COVID-19 on our boroughs, through statistical research and by paying tribute to NHS heroes. Today, we speak to a sufferer of Long Covid, the debilitating extension of acute coronavirus .

From an active lifestyle of jogging, spinning and gym sessions, to intermittent convalescing for nine months and counting, one sufferer of long Covid has seen her life change catastrophically in 2020.

Lisa, 39, an IT professional from Purley who has asked us not to use her second name, first experienced COVID-19 symptoms in March, after a business trip to Glasgow. Though at first she only felt a tingle in her throat, it was only a matter of days before complete fatigue and severe muscle aches overtook her ability to work or socialise.

After nine days of experiencing symptoms, she spoke to a GP who “dismissed” her symptoms. “They didn’t take it seriously at all, because I hadn’t travelled to Italy or China,” she said.

Though Lisa soon began to recover from her first bout, a fortnight after her first illness she began to feel similar symptoms returning. This was followed by another round of severe COVID-19 – a process which has reappeared in “a three week cycle” ever since, according to Lisa.

In May, Lisa realised she was experiencing different symptoms consistent with what has become known as Long Covid, including pins and needles, digestive issues, ringing in her ears and numb fingers and toes. Though she “struggled” through a further three weeks of work, she had to cut down to a 30 hour working week, losing 20 per cent of her salary.

Only two weeks later, Lisa relapsed again and was forced to take furloughed leave, resulting in a further 20 per cent pay cut. She managed to return to work three weeks later, but was only able to cope with working one day per week. She continued to recover throughout July and August. Although now working two days a week, she has had to take time off for  chest pains and palpitations. She was only admitted to a Long Covid clinic towards the end of November, in her ninth month of symptoms.

Lisa’s illness has not only taken its toll on her professional life, but also on her family, as her symptoms of fatigue left her unable to pick up her children from school, and sleeping through her lunch breaks during working days. Though her husband and son both contracted COVID-19 during the first wave, neither have experienced long term symptoms.

Lisa before she caught COVID-19. Pic: Lisa

“Doctors didn’t want to listen”

Lisa has had mixed experiences with medical professionals. “I feel sorry for them, because they don’t know what to do with this,” she said. “It’s against all their conventions and their training.”

Though Lisa repeatedly contacted her GP, 111 and her pharmacist, it was not until June that she received a positive antibody test for the virus. “The test really vindicated me,” she said. “I realised that I wasn’t going mad…everyone had started to think it was psychological for me.”

But the dismissal of her symptoms became a common theme. In June, her GP said the symptoms were “only anxiety”. Admitted to A&E with chest pains in October, she was told she was “fine” and “might just be anxious again.”

Doctors suggested she attend a mental wellbeing group;  for her  it was the worst recommendation. “They’re the people who are making me feel anxious by dismissing it all.” she said. She told her GP: “If I die, this is on your watch, because you’re not listening to me,” and she began to record her symptoms using photos and videos taken on her phone. 

Referral to an NHS clinic dedicated to Long Covid last month did nothing to assuage her concerns. “It was so disappointing.” After tests, she was told  everything was normal.” She said: “I left the clinic in tears. Doctors didn’t want to listen, or understand the cycles of relapse and recovery.”

An online community

Now a member of the Long Covid Support UK Facebook group, she is campaigning for better awareness and is the BAME representative. The Facebook group has also been a part of a project run by the National Institute for Health and Care Excellence to set nationwide standards for medical responses to long Covid patients. “It’s like a postcode lottery of whether you are believed, seen in person by a physician or get to visit a Long Covid-specific clinic.” 

NICE has now recommended that GPs attempt to see patients in person to discuss their condition. The group also asked that GPs do not reduce the illness to symptoms of anxiety.

Lisa is unsure how her illness might develop over time. “In my head, I have a disability now, and I’m having to learn to live a different way,” she said. “I can’t guarantee that I will ever get back to normal.”

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