Until spring 2020, Liza, 38, was a flight attendant and yoga instructor. She was highly sociable and constantly on the move, hopping between continents and studios every week. In June 2020, she caught Covid. Nearly two years on she remains partially confined to her wheelchair and dependent on her mother, who lives with her in a one-bedroom apartment in Houston, Texas. Every fraction of energy Liza can muster is split between trying to walk again and navigating a healthcare system that seems set up to fail.

Long Covid, the name given to a wide array of symptoms that present four to eight weeks after the initial illness has passed, has been one of the most quietly tragic consequences of the pandemic. Most of us can remember someone who just seemed to “disappear” sometime in 2020 or early 2021, perhaps not hearing from them for months before discovering that they’d been too unwell and overwhelmed to reach out. From brain fog powerful enough to destroy basic mental processes to the terrifying prospect of long-term financial ruin, long Covid has the potential to devastate a sufferer’s world from every angle.

According to a survey released by the nonprofit FAIR Health in June 2021, 23.2 percent of Covid patients — amounting to more than 450,000 people — sought care for one or more post-Covid symptoms at least 30 days after diagnosis. Cases of long Covid are thankfully far rarer since the vaccine rollout, but for many, especially those whose infection predated inoculation, the condition still dominates their lives. Liza, and fellow long-haulers Rebekah, Jeanine, and Jack shared intimate details of their experience with KCM for a recent episode of Katie’s podcast Next Question — from their lowest points to the enormous gaps they’ve discovered in the U.S. healthcare system as a result.

The symptoms of long Covid

For Liza, the initial impact of Covid saw her hospitalized in the ICU. She was later moved to a rehab hospital, and about six to seven weeks after the first onset of illness, other symptoms set in. The most dramatic of these was the sudden loss of her ability to walk, but other peculiar and upsetting effects also plague her to this day. 

“I developed full-on neurological symptoms, which entailed body tremors and a disconnect from my brain,” she says. “The internal vibrations are like an earthquake inside your body. It’s as though you’d put your hand on a train track, and you could sense that feeling run through your entire body.”

Some of the most life-altering symptoms Liza experiences are invisible. “Brain fog to me is a traumatic brain injury,” she says. “It’s not just forgetfulness — I’ve forgotten my phone number, my age, I’ve not been able to figure out where I live. At one point, I was failing Alzheimer’s tests.”

The sheer range of potential symptoms caused by long Covid is difficult to overstate. They can include — but aren’t limited to — pain, breathing difficulties, hyperlipidemia, cardiac inflammation, malaise and fatigue, cognitive difficulties, dizziness, heart palpitations, shortness of breath, cough, sore throat, joint or muscle pain, excessive sweating, insomnia, and hypertension. Anxiety is the most common psychological symptom, followed by depression. The odds of death for patients hospitalized with Covid were 46 times higher 30 days after their diagnosis than those who hadn’t been hospitalized.

Jeanine, 43, caught Covid in March 2020, and for 24-48 hours experienced nothing worse than a stomach bug. A month later, she began to suffer acute allergic reactions — to the point when her husband Bryan, with whom she runs a design magazine and website, had to care for her exclusively. 

“I became more and more allergic to our apartment — everything in it was suddenly a minefield,” says Jeanine. “My husband Bryan had to give me the EpiPens because I ended up going into full anaphylaxis two days in a row just after eating lunch.” 

“By the end of the year, she was no longer able to walk, speak or eat,” adds Bryan. 

A slow burn

For Jack, 40, who caught Covid in 2021, the symptoms have been milder than Liza or Jeanine’s. Mainly, he’s just exhausted, all the time. But that’s never gone away — and even though his exhaustion doesn’t entail the same risk as memory loss or anaphylaxis, it nevertheless casts a long, unshakable shadow over his life.

“The fatigue for me manifested in the acute phase,” Jack explains. “I’d sleep as much as 14 hours overnight, and then around 1 p.m., I took a three-hour nap. I still get a lot of sleep most nights, probably eight to 10 hours, and wind up taking a one- to three-hour nap most days. It’s a big obstacle in normal life.” 

Jack’s once busy existence as an associate partner at a top management consultancy has shrunk. Now on long-term disability leave, his goal every day is to be up in time to see his kids off to school.

Juggling symptoms as a parent 

For parents, long Covid brings with it an emotional strain distinct from the primary effects of the illness itself. Rebekah, 42, is a mother of three. She and all her kids — aged 9,12, and 15 — are Covid long-haulers, cared for by her husband, who’s a disabled veteran. Like Liza, she experienced horrific brain fog as a result of the illness. 

“It’s random,” Rebekah explains. “One time I got lost in an Ikea bathroom, like literally in the stall. I couldn’t figure out where I was.” 

Rebekah’s new cognitive impairments came hand-in-hand with other major psychological symptoms — predominantly, detachment. “I feel detached from myself, from my feelings, from my husband and kids, from everything I am,” she says. 

“I wrote down what I remembered of how to parent and how to be a wife to know what I should be doing. Not because I don’t love them, but because I have no instinct anymore.”

The lowest points

The psychological impact of having your physical and mental capacity swept away in such a short space of time is crushing, and for many sufferers of long Covid, gets as dark as can be imagined. Depression — in its worst cases powerful enough to cause suicidal ideation — is extremely common among long Covid patients. 

“I felt like I was dying,” says Jeanine. “It’s the closest I’ve ever felt to that. I felt myself slipping away. I was like, I don’t know if I’m gonna wake up tomorrow.”

“One thing that people don’t think about is being in isolation for months,” adds Liza. “I was in a hospital away from my friends and family, not able to talk to them or see them for weeks. I think it was five weeks before I had even experienced human touch on my body. It gives you a lot of PTSD. My life before Covid was completely different — I was very active, social, and independent. Since Covid, my life is dependent. I am still working on walking.”

The sheer repetitiveness of life when independence is lost only compounds its miserable toll. “Nothing ever changes,” says Rebekah. “It’s like Groundhog Day. I don’t know how long we could survive if this is all there is. I don’t want my kids to, I don’t want this to take away their life. I don’t want their future to be ruined by this.”

“The hardest thing for me personally is the uncertainty of it,” explains Jack. “All most doctors can really tell you is that most people wake up and feel better one day. Twelve to 13 months in, it’s difficult to be super positive about it. You start wondering, is this a forever thing? Am I going to have the income that supports that?”

Failures of the healthcare system

Another nightmare aspect of an illness that remains in many respects an unknown entity is the skepticism so many patients have faced from the medical profession — including their own care teams. 

“Some doctors didn’t believe that long-haul Covid was a thing,” says Jeanine. “I was talking to [a recommended allergist] about it, and she was like, ‘no, that doesn’t exist.’ It was very deflating — I left there crying. We’d waited so long for that appointment, and she didn’t seem to care.”

Even assuming that patients’ concerns are taken seriously, they’re still faced with negotiating an overwhelmingly complicated system — all while bearing the weight of a condition that robs them of the physical and mental capacity to do so. The sheer effort of seeking help demands precious energy that by definition, long Covid sufferers do not have.

“We don’t think about how difficult it is to navigate the healthcare system,” says Rebekah. “I’m a nurse with a genius IQ and I’m struggling so hard to navigate it. If I need 14 specialists, am I really capable of being the middleman? It’s so hard. It shouldn’t be so hard.”

For those who hadn’t experienced a major illness pre-Covid, the hoop-jumping, puzzle-solving, obstacle-ridden healthcare maze they were faced with was a brutal shock.

“Before Covid I thought, ‘I’m totally great, I have health insurance,’” says Liza. “Boy was I naive. You’re on your own for a lot, and you really have to put up a fight, you need to be proactive. If you want to get anything done, it takes a lot more energy.”

The cost of long Covid

“The financial burden has been stressful,” says Liza. “When I was in the hospital, my friend’s family and colleagues started a GoFundMe, which kept me afloat. Though I struggled with the concept initially, I applied for disability and was approved in 2021. I didn’t realize that the medical care portion didn’t take effect until 24 months after. So I’ve been paying Cobra and I use a lot of that. A lot of the coverage on affordable healthcare doesn’t cover a lot of my specialists and medications. My family has had to dip into collective or retirement savings.”

The suffocating crush of medical bills creates a trap not only for adult family members who can no longer work, but also their dependents.

“I’ve lost everything,” says Rebekah. “We’ve gone through our savings. There’s no one to call. My kid has celiac disease, and the food is exorbitant. Now food prices have tripled and it doesn’t matter, because I can’t afford it anyway.”

“I’m lucky enough that I get to keep my health insurance, but my wife and two kids don’t,” explains Jack. “So there’s a new financial burden. There’s a real need for change in the support that’s available for folks. There are folks that have been out of work with no safety net for more than a year, with no real options for significant help. I feel for them.”

Looking forward

The compound effect of major illness; the financial, emotional, and physical strain of seeking medical help; and the lack of any certain outcome is a challenge no one can prepare for. There’s no guarantee that months-long symptoms — a catastrophe in their own right — won’t evolve into a debilitating long-term condition. The lasting general impression that Covid is an illness of two halves — cold-like and mild, or acute requiring hospitalization, and in either case, detectable by means of a positive test — renders swathes of its victims invisible. Long-haulers negotiate unknown territory in the face of ignorance and disbelief on the part of doctors, employers, friends, and even family. They’ve set up their own support groups and lobbied Congress for paid leave, but it’s not enough.

“It’s hard enough just to be sick and to deal with an illness that quite frankly doesn’t get acknowledged,” says Liza. “But then to have to fight to get the treatments to heal and recover on top of it is just really heartbreaking.”

“I’ve put a lot into my career and been somewhat successful,” says Jack. “And now that trajectory and future is completely up in the air. Nobody can tell me when I’ll feel better. I certainly have a lot more anxiety because, while I’m lucky right now, I’ve learned about long-term disability and the system that we have. The insurer’s incentive is to cut me off sooner rather than later.”

“My kids are suffering,” adds Rebekah. “For all intents and purposes, I’ve lost them. My kids have just completely withered away from all that they were, and I’m watching them crumble, and I’ve watched my life just fly away over a stupid freaking virus.”

“I feel like I don’t really want to ever really go out again cause I don’t wanna get Covid,” says Jeanine. “If I get Covid again, I don’t know that I’ll get better again.” 

The interviews with KCM have been edited and condensed.