Life as a Covid-19 Long-Termer - Rolling Stone

It’s becoming clear that, for many people, symptoms can persist for months — and they can wreak havoc on our bodies, and our mental health.

“That was terrifying — seeing a male, middle-aged ER doctor cry like that,” says Batenhorst.

Despite having all the usual Covid symptoms since February — and being immunocompromised and therefore considered high-risk — Batenhorst wasn’t able to get tested or receive treatment in the hospital in March.

And then there’s the toll that long-term Covid has had on her mental health.

“I have been gaslighted by so many people, including several of the doctors that I tried to get to take my case,” Batenhorst explains.

Not only was this a slap in the face to the families and friends of the 218,000 people who have died from the virus, but a major blow to those with long-term Covid whose lives have been dominated by the condition — including myself.

Like Batenhorst, I’m one of the at least tens of thousands of people who have been experiencing Covid symptoms for months, with no end in sight.

And the impact of long-term Covid symptoms is taking its toll on our bodies, and brains; it has been catastrophic to our mental health.

Both have been dealing with Covid symptoms since April — including 11 days Brian spent on a ventilator — and it has taken a major toll on not only their physical health, but their mental health as well.

“I would like people to know that long-haulers are not exaggerating about their lingering and ever-changing symptoms.

So far, findings from two published studies indicate that between 50% and 90% of people with Covid continue to have symptoms of the viral infection three months after first getting sick, even after they’ve tested negative.

After demanding that she answer the questions, Batenhorst told him that she was diagnosed with minor anxiety following a period of severe health complications — at which point the fireman threw his hands up in the air in frustration and disbelief.

This is another common experience among people — including myself — who have sought medical help after living with long-term Covid for months: being told that all of our physical, mental, and neurological symptoms are simply manifestations of our anxiety or depression.

If, like Batenhorst and me, a long-termer has previous mental health diagnoses, it makes it even easier for the doctor to completely disregard our concerns.

Murray, a clinical psychologist and senior scientist at Johns Hopkins University’s Bloomberg School of Public Health, is that fatigue, decreased energy, and trouble concentrating — three conditions closely associated with long-term Covid — are all assessed in mental health screenings for conditions like anxiety and depression.

In 20 years of practicing as an infectious disease specialist, Armitage says that people who have had long-term health consequences resulting from viral infections often see an impact on their mental health, including feelings of frustration and frequently, depression.

Of course, for people who have lived for years with chronic illnesses, none of this is new — especially if the conditions are “invisible,” meaning that there aren’t obvious visual clues that a person is sick or living with a disability.

Having any chronic illness can impact your mental health, Murray says, and while the duration of long-term Covid is still unknown (and partially because of that), it’s not uncommon for people to experience symptoms of depression?

“Just because many people have mild cases and are back to work in a few weeks, it doesn’t mean that there aren’t tens of thousands like us, suffering long-term symptoms and oftentimes are disregarded,” Tammy says?

For decades, people living with chronic illness have put in innumerable hours of unpaid labor trying to educate and even simply convince the rest of us that they’re unwell and deserve certain accommodations and more research on their conditions?

And, as Murray points out, as humans, we want other people to believe us — especially in situations like long-term Covid, where this type of disbelief acts as yet another stressor.

Perhaps part of the reason it can be so difficult for people to wrap their heads around the existence of long-term symptoms, is that so many of us “only” had a mild case of Covid-19 that either didn’t require hospitalization, or didn’t qualify us for a bed in places where there was a shortage.

We expect people who were put on ventilators to face long-term effects of the virus, including breathing problems, weakness, and cognitive challenges like brain fog.

But doctors who have been treating long-term Covid patients, including Armitage, have noticed that most had “moderately severe cases,” with symptoms like fever, cough, and shortness of breath, but never getting to the point of requiring a ventilator or other forms of mechanically assisted breathing.

It doesn’t help that a lot of long-term Covid symptoms are really weird.

And though we’re now at the stage where we’ve accepted loss of taste and smell — and even Covid toes — as both short- and long-term symptoms of the virus, the growing list of lingering effects is far more expansive.

Having a space to learn more about long-term Covid that doesn’t require having to convince others that you’re actually sick, has for many, including myself, been incredibly helpful for our mental health.

For instance, professional athletes who had Covid may end up with long-term conditions — like inflammation of the heart muscle — that could end their careers.

And as Murray explains, people facing new physical limitations thanks to Covid also have to contend with what that does to their mental health.

In her pre-Covid life, Batenhorst — who has bachelor’s and master’s degrees in applied mathematics — worked as a data analyst for companies like Intel and Portland General Electric, and taught math at several different universities.

John Krakauer, a neurologist at Johns Hopkins University and director of their Center for the Study of Motor Learning and Brain Repair, there are similarities between cognitive long-term Covid symptoms, and those associated with TBI.

“And I think that the post-Covid patients — especially the ones with neurological symptoms and body weakness — are very similar, and should be thought about in the same kind of way.”.

“Having this information, the health system decided that it’s time that we start looking at this disease as something that’s long-term — something that’s chronic — and start treating this group of patients with a focus on making sure that they get all the specialty care that they need in order to overcome all the symptoms,” Chen tells Rolling Stone.

And beyond acknowledging that someone with long-term Covid could develop anxiety, depression, or other mental health conditions, the newly created Center for Post-Covid Care at Mount Sinai tailors their services to meet the specific needs of this patient group.

“Just imagine someone who is ill — who got very sick, very quickly, through really no fault of their own — and still has symptoms that they don’t know what to do with, and are now stuck at home and can’t go to work, or maybe lost their job,” Chen says.

Karen Kline, a marriage and family therapist — as well as a Covid long-termer — can attest to the impact of the condition on our mental health.

We’re also getting some (admittedly very) preliminary information on exactly how many people with Covid go on to experience long-term effects

“Assessing for the blood clotting status and putting people on certain types of blood thinners is now a foundational part of the management of the sicker patients,” Armitage says, noting that clotting is likely responsible for symptoms like COVID toes

Abe Malkin, founder and medical director of Concierge MD LA, have shifted their perception of Covid from a brief viral infection, to a condition that can result in long-term physical or neurological effects

For example, Malkin sees Covid as having more in common with conditions like mononucleosis (caused by Epstein-Barr virus) and Lyme disease (caused by bacteria) than the flu

“That’s not to say that Covid is going to be a lifelong infection for everyone,” he says, “but I’ve started to think of it in terms of how I’d treat mono or Lyme disease: about how to manage the inflammation — not just the symptoms, but the underlying conditions, too.”

Of course, the onset of any long-term condition has the potential to bring depression, anxiety, and other mental health conditions along for the ride