"This Is Debilitating": Seven Months of Pain From Suspected Long-Haul Covid Illness
"The only time I don't feel faint and dizzy is when I lay down completely still."
This article has been updated.
Natalie Alford believes she has been suffering from Covid since early April.
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Today’s post is about the long-lasting effects Covid can have on its victims.
Natalie Alford was a musician and performer in Chicago with a promising career when she got sick. Today she can’t even play the piano.
“Live performance would have been over even if I was healthy, but now I can't even practice piano,” she told The Flashpoint in an email interview.
Alford believes she is one of the so-called “long haul” Covid sufferers whose symptoms and illness are continuing for their seventh month. A singer and dancer, Alford can’t do any of the things that used to bring her joy.
“I still have trouble breathing when I talk, so there is no singing anytime soon,” she said. “I'm trying to learn sign language so I don't have to talk all the time because of losing my breath. My partner and I started off quarantine recording, but that stopped and I couldn't even do it if I tried. I miss playing piano severely, it has been a huge coping mechanism in my life that I can't do anymore.”
“It felt as if I was poisoned, had a flu, and pneumonia”
Alford first felt the effects of her illness on April 3 when she fainted while giving her dog a bath.
“I didn't have health insurance at the time, and they were imploring us to not go to the hospital if the symptoms weren't that bad,” said Alford, who conducted this interview via email.
The first few days were tough, she told The Flashpoint, but things got much worse in the second week—a familiar pattern for those suffering from Covid. Alford said that she had chills, a fever, and “thunderclap” headaches that made it impossible to function.
“It felt as if I was poisoned, had a flu, and pneumonia,” she said. “I could say ‘Yes,’ ‘No,’ ‘Water,’ or ‘Food.’ Anything past that and I was out of breath.”
Despite the pain, Alford resisted getting medical attention for a familiar reason—the American for-profit healthcare system.
“I had no insurance, and years of working in the food service industry made me used to just going through my illness,” she said.
“Baffled” doctors and experts
At the end of April, she finally went to the ER. Doctors found no trace of the disease and refused to give Alford a blood test because she was still experiencing symptoms. This tracks with what other long-haulers have reported—testing negative after going to the hospital despite exhibiting symptoms.
Alford returned home and things got worse.
“For a month I continued laying down, sleeping 20 hours a day, convulsions started happening, and all the other things were still happening,” she said. “And May 30th I again couldn't breathe without tremendous effort, so we went back to the ER. The blood test for mono, HIV, came back fine. My x-ray of my lungs were fine. However when I asked they wouldn't give me an antibody test, stating that it was because I was still exhibiting symptoms.”
Her partner put her on his insurance. Things changed for the better—doctors returned calls and set up appointments—but the source of where the disease has damaged her remains a mystery.
“I have a Neurologist and primary care physician that I see right now who are baffled at my symptoms and have no idea how to treat me other than nausea medication with ibuprofen,” said Alford. “My MRI showed there was no stroke or aneurysm, so I will be seeing a pulmonologist soon to see if it is my heart that is giving me trouble.”
While she’s not tested positive for the disease, Alford said the only explanation that makes sense is Covid long haul. She’s talked to other long-haulers who describe similar symptoms—exhaustion, confusion, and pain—and after researching every other disease it could be, the conclusion seems inescapable.
It’s not unheard of for those in the Covid long haul community to not test positive.
According to a September report in Stat News:
Some people who believe they had Covid-19 might instead have had a cold or the flu or some other illness, but even patients who had positive tests showing they had active coronavirus infections report skepticism from doctors about their chronic symptoms. Those without such laboratory confirmation can face much greater obstacles, said Daniel Griffin, chief of infectious diseases at ProHealth Care, a medical system with multiple facilities in and near New York City. These patients routinely report difficulty finding a doctor who takes their complaints seriously, he said.
“By the time they reach me, they’ve been told their story is not believable,” said Griffin. “They might have lost half their hair and can’t go up a flight of stairs, but if they don’t have proof of Covid, a lot of providers don’t want to deal with them or will refer them to a psychiatrist.”
“I know there are other people out there who didn't get their test in the window it takes and who got worse in the second month with doctors not taking it seriously,” said Alford, who said she is demanding an antibody test this week.
Ramifications of the illness on the home front
Alford’s partner works from home and has been able to provide her round-the-clock care, but that’s come with its own challenges and “tremendous stress,” she said.
“We could never afford a professional caretaker in our wildest dreams and luckily he works from home,” she said. “Friends come by here or there if he is gone for more than three hours.”
The extent of the physical disability brought on from her illness is hard to imagine for a woman of only 33. Alford needs a wheelchair to get around the house and to go outside, but even then she can only make it about ten minutes before feeling sick and dizzy. The same applies to car rides, she said.
“The only time I don't feel faint and dizzy is when I lay down completely still,” she said. “The only time I go out is to the doctor now and I need to take vitamin D supplements because even going down the stairs is hell.”
In the house, it’s a struggle to even from one room to another.
“When I walk it is as if I am 80 years old, and I am fainter with each step, so I do need someone around to get me water, food, and help to get to the bathroom,” said Alford.
It’s all caused tension between her and her partner.
“He has to do everything now, and I feel guilty because he never gets a break,” said Alford. “I also get jealous of him because he can move, get up and sit down with ease.”
A word of warning
While she’s taken to social media to warn people about her experience, Alford worries that the full danger of Covid is still not appreciated. That’s the message she wants people to take from her illness, she said.
“I keep trying to warn people via twitter that this is debilitating, confusing to doctors, and they will absolutely have to apply for disability unless you work from home,” she said. “It goes up and down, and you don't know what symptoms will be better or worse.”
And, she said, you should make a plan now.
“I personally feel everyone needs to find people now who can take care of them and vice versa just in case this happens,” said Alford. “If I didn't have my partner and my friends I honestly don't know what I would do.”