Tuesday, August 16, 2022

‘I Just Expected To Wake Up One Day And Be Healthy Again… And I Never Really Did.’ One Kiwi’s Experience Living With Long-Haul Covid-19 For 20 Months

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Now that we’re almost two years into the pandemic and there’s a vaccine, it’s easy to underestimate just how stressful those early days of Covid-19 were, when the world changed overnight. We talk to an expat Kiwi living in Los Angeles, who – along with her partner – caught suspected Covid-19 the week that LA (and the world!) shut down. However, while her partner got better, she didn’t – and the ramifications of long-haul Covid are still playing a big part in her life.

Working in a lab at the University of California Los Angeles (UCLA), Elsie Jacobson and her colleagues were slightly ahead of the curve when it came to being aware of something called SARS-CoV-2.

“From January 2020, we were talking about it because someone in our lab was getting information from people they knew in China,” she says. “We were talking about it a lot but we weren’t taking it as seriously as we should have been; we didn’t realise what it was going to become.”

Elsie had moved from Aotearoa to California in November 2019, to work as a postdoctoral researcher in biological chemistry. She was so new to living in the city that she didn’t even have a GP set up, she laughs. “I just figured, ‘well, I’m young and I’m healthy, I’ll do it when I need to.’”

She’s not exaggerating – the month the pandemic arrived in California, Elsie, then 28, had just completed a challenging 10km race in the hills of LA and was deadlifting 140kg as part of her weight-lifting practice. Then, in a two-week period at the start of March, everything shifted quickly.

Elsie’s fiancé James got suddenly sick with a bad fever and was in bed for days. Elsie was due in Seattle for a conference, but then Seattle was hit by one of the first major Covid-19 outbreaks in America, and it was all shut down. “We were talking about starting to work from home and maybe just go into the lab for our weekly meeting – and then a week later, the whole university was shut down,” Elsie says. “And then I got sick.”

To this day, Elsie and James have never formally tested positive for Covid-19, but they got very sick, very fast, the same week the pandemic arrived in LA. It is suspected by the numerous specialists she’s seen since that she has long-haul Covid-19.

“We couldn’t get tested, because it was literally at the beginning of the pandemic and no tests were available. We were being told, ‘if you get sick, don’t come to the hospital unless you think you’re going to die.’”

“We couldn’t get tested, because it was literally at the beginning of the pandemic and no tests were available,” she says. “We were being told, ‘if you get sick, don’t come to the hospital unless you think you’re going to die.’” James’ sickness was initially worse than Elsie’s, but unlike her fiancé, she never got better.

“I remember I kept emailing my boss, saying, ‘I’m getting better, I’m sure I’m getting better; it’s just around the corner!’” she says. “Looking back, I was completely out of it… I don’t really remember about three months.”

After two and a half weeks of still feeling very sick, it was her heart rate that eventually lead Elsie to visit an urgent care clinic. “As well as a cough that wouldn’t go away and generally feeling awful, every time I stood up my heart rate would go from 50-60 beats per minute to about 120 and not go back down.”

Upon arriving at the clinic, the doctor tried to tell her it was just anxiety over the pandemic that was making her heart race. “Then they actually measured my heart rate and saw what I was saying was true,” she says. “And then they gave me a chest X-Ray which showed I had also developed pneumonia.” The pneumonia eventually cleared but the rest of the symptoms weren’t really shifting.

For over a year severe nausea and other gastrointestinal issues came and went, along with dizziness and tachycardia, headaches and always feeling too hot or too cold, among other things. A lot of food tasted bizarre – something as simple as bread would taste like metal, and she now hates the taste of coffee and dark chocolate, which used to be her favourite treats. The first few months were completely terrifying, Elsie says. “At the start, it was a challenge just to eat something or walk to the bathroom.”

“I tried to go back into the lab and just physically going to the lab and trying to do stuff for two-three hours just exhausted me so much that I would start crying and my hands would start shaking.”

But it’s the fatigue that has been the most long-term, Elsie says. Her PhD had comprised both lab work and computational analysis, and her post-doc – pre Covid – had been the same. But the exhaustion has made that impossible to continue with. “I tried to go back into the lab and just physically going to the lab and trying to do stuff for two-three hours just exhausted me so much that I would start crying and my hands would start shaking; I’d have to go home,” she says. “So now I’ve had to transition completely to doing computational work.”

She describes it as a kind of brain fog that gets progressively worse if she doesn’t rest and means she loses control of her mind and body – “the closest thing I can compare it to is the loss of control and coordination that comes with being drunk or being awake for 48 hours.” So when it hit while she was holding a scalpel in a lab, it was a big deal. Elsie has stopped driving completely because it poses too high a risk, should the brain fog come on while she’s behind the wheel.

It’s the same with life outside of work – she can’t exercise now, except for walking, and all forms of socialising now have to be limited. “I don’t drink anymore, because I’m afraid to, but even if I meet up with friends at a bar and drink water for two hours, I wake up feeling like I have a hangover,” Elsie says. “So if you can imagine that that sort of thing is enough to make me feel sick, I just have to be so careful with what I do with my day. I have very limited energy.”

It is slowly getting better, but it’s still a delicate situation. “If I work too long, if a social event runs a little late, if I try and do some exercise, then I often have a flare up – and they can last for a day, or for a week or two. It used to be months. I work really hard to manage my energy levels but sometimes flare ups just happen without explanation.”

“A lot of the ways I manage my life now are completely informed by ME [chronic fatigue] and fibromyalgia communities.”

Elsie says she is indebted to the chronic illness community, who have been experiencing the confusion and frustration of invisible illnesses for a lot longer. “A lot of the ways I manage my life now are completely informed by ME [chronic fatigue] and fibromyalgia communities,” she says. “And I feel grateful, because people get these chronic illnesses all the time and historically don’t get the support, or the resources, or the awareness they need.”

It’s given her a far greater understanding of the challenges faced by the chronic illness community, she says. “I hope that if anything comes out of this, it really spurs action into things like research into chronic illnesses, long Covid-19 and beyond, and changes in policies in terms of sick leave and flexible working. And, generally, just a bit of a reckoning around how we accommodate people with illness and disability.”

The effects of being in a pandemic and having a chronic illness have meant that Elsie has had to take particular care of her mental health during these past 18 months, and she credits two tools in particular for helping her stay well: regular therapy and cats (is there a better combination?)

“We adopted a cat last December and we loved having a cat so much we adopted another in May,” Elsie says. “I don’t really want to think what my mental health and my emotional wellbeing would be like if we hadn’t got Glen and Opie, because they’ve helped so much.”

Elsie, Opie and James, last Christmas (complete with festive hats!)

Being far from home and family was another layer on top of everything but Elsie said it actually gave her more relief than it did homesickness to be unable to return to NZ easily. “The past two years would have been a lot more stressful if I hadn’t known my family were safe; so in that way I’m glad I couldn’t come home, I’m glad that New Zealand is taking this so seriously.”

James and Elsie were supposed to return in May last year for their wedding – obviously yet another plan that has been postponed – but she says it will make their day that much sweeter once they’re able to get back here. “It will be very special,” she says. “Definitely ‘through sickness and health’… I’m very grateful to have the support I have from him.”

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