COVID long-haulers feel abandoned and invisible
How a single infection has changed the lives of two New Mexicans
This story was originally published by Source New Mexico.
In southern New Mexico after a monsoon rain, you can catch the earthy, dusty smell of creosote bush. Even if you’re indoors, so long as the windows are open.
During dry parts of the year, the scent of creosote, sometimes called chaparral when used as an herb, is not nearly as sharp.
About a month after Heath Haussamen was infected with coronavirus in August, he couldn’t smell anymore.
The area around Haussamen’s home near the Gila National Forest has a lot of creosote bush, and he remembers sticking his hands in it and breathing in through his nose, trying to get a sense of it.
When his nose started working again, most of the scents he regained were rancid, like the smell of rotten food.
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On Nov. 8, 2021, he was near the middle of a creosote area, with the plants up above ground all around him. He realized he could smell it, and it was the first good scent he could detect since his diagnosis.
“This was much more faint, and it had a dusty quality to it because it was well after the monsoons,” Haussamen said. “I remember just — it brought me to tears. I had to sit down and just weep.”
He soaked in the scent, trying to commit it to memory. He didn’t know how long it would be before he would get another good one again. It gave him hope he and others might be able to heal.
That was just one part of Haussamen’s life that seems to have permanently changed since he was infected.
Elsewhere in northern New Mexico, Sitara Trumbull got a phone call in October from a friend in Chicago who was dying from cancer. She and her husband asked Trumbull to come help her.
Trumbull, who worked as a nanny and a death doula at the time, didn’t fly because she was scared of getting COVID. So she took a train. She wore a mask throughout the trip.
She took care of her friend for five weeks until she died. Trumbull and her friend’s husband traveled to Oklahoma that November for the funeral.
“I was the only person wearing a mask at the funeral,” Trumbull said.
Once she got back home to Santa Fe, she started getting sick. She had a fever of 103 degrees, bad nausea and debilitating joint pain.
“I was crawling to the bathroom,” she said. “I had a horrific cough — I coughed for 42 days straight, 24 hours a day.”
She had brain fog but didn’t really notice it yet because she was already so sick. She was also weak and had little appetite.
She got an infusion of antibodies in the Christus St. Vincent emergency room in November. But she hasn’t seen much improvement since, she said.
Trumbull and Haussamen are two of potentially tens of millions of people in the United States suffering from long COVID, a chronic illness that leaves people living with a whole slew of COVID symptoms for months, or even longer, well past their initial diagnosis. Long-haulers do not remain contagious.
As much as one-third of people who catch COVID can develop long COVID, even when the initial symptoms seem “mild.”
For Trumbull and Haussamen, their experiences with the disease have been anything but mild.
“My cough is better, but all the other symptoms are still pretty severe,” Trumbull said. She still has intense joint pain, fatigue, brain fog and a persistent daily headache. She struggles to even explain how tired she is all the time.
“If I do the dishes, I have to go lay down for two hours,” Trumbull said. The same thing goes for taking a shower.
Hassaumen affirmed that his experience is similar: To accomplish daily tasks, he must lay on his stomach and take deep breaths.
Out of work, out of mind
Neither Trumbull nor Haussamen have been able to work since their diagnoses. She doesn’t go anywhere anymore, other than picking up curbside groceries and, on good days, walking her dog.
If she wasn’t on disability, she would have to work somehow, even though she is far too sick.
“I don’t know how I would do that,” she said.
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Trumbull has been immunocompromised and dealt with long-term health issues including chronic fatigue syndrome and fibromyalgia since 2001. Before getting COVID, she was able to work a 10-hour day, chasing a toddler around or sitting with a hospice patient while they were dying.
“I can’t even imagine doing that right now,” Trumbull said. And those chronic conditions “amped up” after she got infected, she said.
She is in the palliative care program in Santa Fe that she described as very supportive. They helped her get the infusion and check in with her monthly. But they just don’t know what to do with patients like her right now, she said.
There’s no universal definition of the illness, public health experts told the Michigan Advance in late February.
Medically vulnerable people have weaker immune systems than the average person. Haussamen said he has a history of chronic illness dating back to his strep throat as a teenager and mono in college, a time when most adults have built up mono antibodies.
“It’s the same thing I’ve been hearing for 20-some years: ‘We don’t know what to do to help you. We know you’re sick. Good luck,’” Trumbull said.
Hearing things like that from doctors is disappointing, Trumbull said.
“I think it just makes me feel more invisible,” Trumbull said. “It’s like the doctors see you, but they don’t really know what to do with you. So they just want you to go away.”
Haussamen is an outdoorsman, an outdoor photographer and a former journalist. He’s not sure how he caught COVID, but among the possibilities was doing what he loves: on a hiking trip in August 2021 with his father Wally in Fillmore Canyon in the Organ mountains.
He had mild flu-like symptoms at first: mild fever, a sore throat, a small cough, body aches and shortness of breath. He still experiences short-term memory loss and brain fog that leaves him unable to remember words.
“I know the word in my brain, but I can’t get it out of my mouth,” he said.
He doesn’t have the health to drink alcohol anymore, but once or twice a week, he wakes up and feels like he is hungover.
“I have to intentionally think through what are all the things I did last night to remember them, and if I don’t do that, I just never remember them,” Haussamen said.
His throat is scratchy all the time, he has a consistent cough and restless leg syndrome, and sometimes he has heart palpitations that keep him up at night.
The energy he used to have has not returned, he said. He had the stamina to hike “forever,” he said, his only limitations being sunlight or his fellow hikers getting tired. Now he definitely has an internal limit.
A couple of weeks ago, he hiked 6 miles on flat desert terrain — the longest distance he’s been able to go since he was infected.
“I don’t have to sit for as many breaks as I used to, but I still can’t walk, and elevation really gets me,” he said. “It wears me out very quickly.”
Lifting protections a ‘major mistake’
Trumbull was disappointed to see government officials lift mask mandates and other COVID protections, calling the move “a major, major mistake.”
Now, people like her must stay home or go out and risk becoming ill, she said.
A study released in December found that most omicron cases in Scotland seemed to have been among people who’d already had coronavirus before, and omicron made up 10 times more re-infections than delta did.
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Long-haulers are increasingly reporting reinfection with omicron, according to Elisa Perego, an honorary research fellow at the UCL Institute of Archaeology and one of the earliest people to use the term long COVID.
“It made me feel like those of us who are immunocompromised and/or dealing with long COVID, it was just another layer of us becoming invisible because now we’re all going to be homebound,” Trumbull said. “And many of us are going to choose not to go out because of the mandates being lifted. Because we don’t feel safe.”
Because of those decisions and the broader push to “get back to normal,” more people are going to get sick, especially with warmer weather and more gatherings without masks, Trumbull said.
“I do think it’s a slap in the face to people who are immunocompromised, or too young or too ill to be vaccinated,” Trumbull said.
The mask mandates should have stayed, because they are one of the best ways we have to protect each other.
On any given day, you can find Haussamen posting the latest case counts and deaths reported by the New Mexico Department of Health.
Haussamen said he doesn’t feel like government officials are taking the pandemic seriously or doing what people with long COVID need.
Plus, the scientific community has been slow to figure out how to study or treat it, he said. The medical system has been overwhelmed trying to treat acute COVID, Haussamen pointed out, so there hasn’t been a lot of leftover time to dig into long COVID, he said.
“Our government doesn’t really want to admit that long COVID is keeping people out of work, because the government wants people back at work. So there’s not a lot of help,” Haussamen said. “There’s a real push to get back to normal, and people who are suffering from long COVID are a reminder that there’s nothing normal about what’s happening. I think there’s a real tendency to look the other way.”
We could have made the policy choice to pay parents to stay home, Haussamen said, but instead we’ve decided that children must go back to school so that parents can go back to work.
“We have blank checks for war,” he said. “We could have subsidized small businesses staying closed or limited capacity, and subsidized parents staying home with their kids. And instead, we had to get people back to work. That wasn’t for the health of people, that was for lining the pockets of the people who donate to campaigns and the wealthiest people in our society.”
Austin Fisher is a journalist based in Santa Fe who reports for Source New Mexico.
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