COVID-19 ‘long-haulers’ reveal what it’s like to suffer for months on end

Hair loss, rashes, loss of taste, fainting, insomnia. So-called COVID-19 “long-haulers” have shared the symptoms they say don’t go away.

Melbourne woman Katie, 33, still doesn’t know where she got COVID-19.

“I have no idea how I could have contracted it,” she says.

“I have been working from home since March, I drop the kids off at childcare, get a takeaway coffee every few days, go to the supermarket once a week. That’s it.”

Katie was infected with coronavirus six months ago and is still sick. She is part of a growing community of “long-haulers” coming together in cities around the world to share their experiences and their frustrations.

Interestingly, they are also sharing their symptoms – symptoms that vary widely from patient to patient.

Speaking with news.com.au, Katie says she has lost her sense of smell and “still can’t taste 100 per cent”. She also has rashes, a symptom that a tiny percentage of sufferers deal with.

“I have a rash on both arms which sometimes shows up on other parts of my body.”

Before she was diagnosed with COVID-19, she experienced none of the usual, common symptoms.

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NSW Health workers at a drive-through COVID-19 testing clinic. Picture: Bianca De Marchi/NCA NewsWire

“I was physically fine – no runny nose, cough, sore throat. I just lost my sense of smell which I was weird so I got tested to be sure.”

David Steadson, an Australian man living in Sweden, is also a long-hauler. He told news.com.au last week that his symptoms have persisted since March when his entire family became infected.

“We all recovered within a couple of weeks, then a couple of weeks after that, I fell ill again. I am still ill,” he said.

“I’m improving week to week, but still have several days (like the past few) where I feel as if someone is strangling me and I can’t breathe properly.

“The last three days I’ve had an inflamed and painful digestive tract. And sleeping? Forget it. I can only sleep when I’m too exhausted to stay awake.”

Andi Slavitt, who worked for the Obama Administration as head of healthcare, shared the experiences of long-haulers on Twitter last week.

COVID Update September 7: The best way to overview what’s going on w people w long term #COVIDー19 symptoms is to let people with #LongCovid speak for themselves.

And I gave a few things to say too. 1/

— Andy Slavitt @ 🏡 (@ASlavitt) September 8, 2020

“As with many viruses, some people experience symptoms long after their initial diagnosis,” he wrote.

“Known as long-haulers, it can be rough going as symptoms can impact the nervous system, heart, lungs, gut, smell/taste, kidney, brain, immune system, energy.”

Long-haulers flooded in with responses.

“My kid, 13, got it in March just before school closed in Paris. School just reopened and today he fainted,” one woman wrote.

“The hair loss is a real thing. It’s hard not to cringe when I look in the mirror … I’m tempted to shave it off,” another woman wrote.

One man wrote how he had struggled for six months.

“Day 183: persistent cough, shortness of breath, periodic chest pain and/or rapid heart rate at rest. Severe headaches, digestive changes, sensory changes in feet and legs, muscle cramps, sweats, hair loss.”

Another woman shared her “hellish” journey.

Nurses tend to a COVID-19 patient. Picture: Adek Berry/AFP

“First positive test: May 2. I’ve had intermittent chest pain, sharp headaches, sporadic memory loss/gaps, brain fog, hair loss, exhaustion and am still regaining my sense of smell. It’s been hellish.”

The hair loss is a symptom experienced by COVID-19 long hauler and Hollywood actress Alyssa Milano, who revealed her symptoms earlier this month in a post on Instagram.

“I’m still taking an aspirin every 3 days to thin my blood, fish oil, vitamin D, C, zinc and a B complex. I still have occasional heart palpitations. I still forget my words (absolute worst part),” she wrote.

“But it’s not nearly as bad as it was a few weeks ago. I feel better.”

Thought I’d show you what #Covid19 does to your hair. Please take this seriously. #WearADamnMask #LongHauler pic.twitter.com/H0wCmzYswV

— Alyssa Milano (@Alyssa_Milano) August 9, 2020

Joanna Halls, 46, represented Australia at the Olympics in Sydney in 2000 and Beijing in 2008.

The former fencing champion contracted COVID-19 eight weeks ago and has still not recovered.

She told SBS News that her symptoms include vomiting, bleeding gums, shortness of breath and memory loss.

“I used to be so strong,” she said. “Now I’m like an old lady in the head because I can’t concentrate sometimes, and get confused, disoriented and irritable, and when I go out for a walk I’m frail and weak.”

Facebook groups have popped up online for long-haulers to share their stories and support one another.

Among the groups are Long Haul Covid Fighters (80+) and Long Haul Covid Fighters (30+). On Twitter, the hashtag #LongCovid is full of stories from sufferers.

Despite patients sharing their stories, the Australian Government has no advice online for long-haulers.

However he British Government just last week issued guidance for those suffering long-term health effects of the virus.

The official notice tells Britons they could experience the following persistent symptoms: “Respiratory symptoms, cardiovascular symptoms, protracted loss or change of smell and taste … fatigue, weakness and sleeplessness, liver and kidney dysfunction, clotting disorders … skin rashes.”

It says one in 10 people suffer for more than four weeks. Which means the majority recover fully.

Andrew, 35, from Sydney, is one of the lucky ones. He says he felt sick for a couple of nights and the virus went away.

“It was like a cold for a night or two, that was it,” he said.

“I’ve actually had a cold (not COVID-19) for a week and it is way worse (than COVID-19 was).

“I’m pretty lucky. My mother-in-law got it bad. She was sick for like six weeks, in and out of hospital.”

She, too, has now recovered fully.