For Those With Long COVID-19, 'Returning To Normal' Is A Massive Battle

Coronavirus long-haulers discuss the mental toll of their uncertain prognoses.
“I’ve worried that because my issues aren’t immediately visible that I will have to fight both for doctors and people in my life to believe this is something I’m going through," one COVID long-hauler said.
d3sign via Getty Images
“I’ve worried that because my issues aren’t immediately visible that I will have to fight both for doctors and people in my life to believe this is something I’m going through," one COVID long-hauler said.

Lesli Richardson, an author living in Tampa, Florida, got COVID-19 earlier this year. It was a mild case, but even so, she said she’d never felt sicker in her life.

“Fever, coughing, fatigue. Loss of taste and smell. Brain fog,” Richardson told HuffPost.

Even now, she still has recurring bouts of phantosmia, meaning she smells things that aren’t actually there ― usually a cigarette smell. Neither she nor her husband smoke. Other COVID long-haulers have reported smelling odors they describe as “burned,” “foul,” “rotten,” “sewage” or “chemical,” according to WebMD.

Richardson got vaccinated in April but she’s still experiencing fatigue and brain fog. Her lack of energy has made it near-impossible to do her job.

“My life’s been scrambled,” she said. “I’m a writer, and in the past used to write several books a year. I’ve only published one this year, and am barely able to write now. Edits are painfully slow, too, because sometimes I stare at the page and things just don’t make sense.”

“Honestly, I don’t have much optimism right now,” she said.

Lesli Richardson, an author living in Tampa, Florida, got COVID-19 earlier this year and has been living with symptoms ever since.
Lesli Richardson
Lesli Richardson, an author living in Tampa, Florida, got COVID-19 earlier this year and has been living with symptoms ever since.

The mental strain and depression Richardson is experiencing are common among COVID long-haulers because they have such a limited understanding of their prognosis: Will they regain their sense of smell or taste? Will their reserves of energy ever return? What long-term neurological complications of COVID-19 will researchers discover next?

Long COVID” and “post-COVID” conditions refer to health problems that patients experience more than four weeks after their initial coronavirus infection. Common physical symptoms include brain fog, shortness of breath and persistent loss of smell or taste. Almost 25% of COVID-19 patients develop long-lasting symptoms, according to one recent report.

But the stress of these lingering symptoms can take a huge toll on patients’ mental health, too: A University of Oxford and NIHR Oxford Health Biomedical Research Centre study found that nearly 1 in 5 people diagnosed with COVID-19 also suffer from psychiatric disorders such as anxiety, depression or insomnia within three months.

George Alba, a pulmonary and critical care physician at Massachusetts General Hospital and the associate director of the Pulmonary Coronavirus Recovery (CORE) clinic, told HuffPost in an email that he’s seen patients who met diagnostic criteria for anxiety, depression and adjustment disorder ― especially those who were critically ill. For patients admitted to the ICU, PTSD is another recurring problem. For some, the overall symptoms are so debilitating, they’ve had to stop working.

“The majority of patients we have followed have had a gradual improvement in their symptoms and some have experienced complete resolution of their symptoms but there are many who have not improved, and they feel frustrated and are learning to cope with this ‘new normal,’” he wrote.

‘This has been a really dark period of my life.’

Roughly 10 months after getting COVID-19, Madison Rosenbaum is struggling to wrap her head around the idea of a “new normal.” The communications specialist, who lives in Kennewick, Washington, has lingering long-hauler symptoms that include a lack of smell and taste and brain fog.

“To say I am exhausted is an understatement,” Rosenbaum told HuffPost. “Combine my long-hauler symptoms with my general anxiety and depression, this has been a really dark period of my life.”

Her current “normal” includes dealing with parosmia, a disorder in which the scent of certain things ― or, in some cases, everything ― is distorted. Rosenbaum had no clue what she was experiencing until one day she Googled “my mango tastes really bad after COVID” and came across some Facebook groups dedicated to people who have COVID-19.

“I have had people tell me I am exaggerating my situation for attention or making it up. To not be believed by some that my condition is impacting me this much has been heartbreaking.”

- Madison Rosenbaum, who has long COVID

“It has made eating and socializing extremely challenging,” she said. “I feel like a social burden to people when I get invited to go out to eat or invited to come over for dinner or drinks. I can only eat a handful of foods since most foods taste rancid, overly sweet ― like shampoo or orange cleaner, or my personal favorite, rotten milk.”

To illustrate, Rosenbaum said that if you were to put a glass of red wine and a glass of rotten milk in front of her blindfolded, she’d struggle to differentiate the taste. Eating has gone from something she often looked forward to, to something she dreads.

“I have had people tell me I am exaggerating my situation for attention or making it up,” she said. “To not be believed by some that my condition is impacting me this much has been heartbreaking.”

There’s no miracle treatment to restore those senses yet, but Rosenbaum is optimistic that research being conducted on the sensory impact of the coronavirus will yield results.

“And personally, I’m optimistic when I have those great days where something tastes somewhat normal to me, like whipped cream or even a piece of fruit,” she said. “I’ve cried during those moments. I have so much gratitude for my body trying to heal.”

Madison Rosenbaum's lingering long-hauler symptoms include a lack of smell and taste and brain fog. For a month or so post-infection, she had extreme fatigue.
Madison Rosenbaum
Madison Rosenbaum's lingering long-hauler symptoms include a lack of smell and taste and brain fog. For a month or so post-infection, she had extreme fatigue.

‘It took months for doctors to take my symptoms seriously.’

Robin, a community educator in Allentown, Pennsylvania, who asked to be identified by their first name only to protect their privacy, caught the coronavirus in July 2020.

“Where I was living, most people didn’t wear masks and I literally wasn’t going anywhere but work and the grocery store,” they told HuffPost in an email.

Robin’s initial symptoms were fatigue and extreme brain fog, which later gave way to aches and dizziness.

“The three months following my initial illness I couldn’t do much more than a few hours of writing a day,” they wrote.

“I went to a carousel of doctors about my symptoms,” Robin explained. “They found various abnormalities but never enough to diagnose something until recently I was diagnosed with postural tachycardia syndrome (PoTS) ― a condition that causes your heart to speed up by at least 30 beats per minute when you stand up after sitting or lying down ― which they believe came from the COVID illness.”

While Robin mostly feels better now, they still have days of extreme fatigue and feeling out of breath. They’re still upset at the disbelief they’ve faced from the medical community and from many family and friends when sharing about their symptoms.

“It took months for doctors to take my symptoms seriously,” they wrote. “I also feel like because it’s kind of an invisible disability sometimes people don’t look at me and see some of my physical limitations.”

There’s also this feeling of having lost the majority of a year because of COVID-19.

“I had a job offer at an organization I dreamed of working at and I had to turn it down because I just couldn’t physically handle it,” Robin said.

“I have accepted the fact that my body might not do what it did before and that doesn’t bother me,” they added. “I’m more upset at the fact that most people aren’t talking about these potential long-term effects and considering that impact for patients.”

Kids with long COVID are also struggling to ‘get back to normal,’ too.

Kids with long COVID have their unique struggles. Nola Pressley’s 14-year-old daughter, Savannah, had COVID-19 twice: In March 2020 and in November 2020.

Savannah’s lingering symptoms include extreme fatigue, nausea, migraines, dizziness, joint pain and palpitations.

Her mother said the vaccine actually helped a lot; so did having a team of doctors at Cook Children’s Hospital in Fort Worth, Texas, near where the family lives. The physicians took the teen’s symptoms seriously and referred the family to the specialists she needed almost immediately.

“[My daughter] is afraid for all the kids who have no idea how bad it is. Kids who are healthy right now but might not be.”

- Nola Pressley, whose 14-year-old daughter, Savannah, has long COVID

Pressley said returning to school this summer has been rough for Savannah —so much so that their family is considering alternative online options.

“Apparently, a one mile walk is doable and eight hours of sitting in uncomfortable chairs and carrying books is not ... not yet anyway,” Pressley said.

Pressley said it’s also been hard for Savannah to hear people discount the impact COVID-19 has on kids like her or to watch parents fight against wearing masks on school grounds.

“To go to school when you know what COVID can do, and see everyone not wearing masks and acting like the pandemic is over when it’s not, is terrifying for her,” Pressley said. “She’s afraid for all the kids who have no idea how bad it is. Kids who are healthy right now but might not be. It’s causing her so much stress.”

Both mother and daughter want to get back to normal, but right now there’s just too much uncertainty.

“‘Normal’ would be enough people vaccinated that we don’t have to worry about COVID anymore. We don’t see that happening, though ― and delta just made things a whole lot more complicated,” Pressley said.

What advice are doctors and therapists giving COVID long-haulers?

Working through diagnostic uncertainty ― not to mention fears over the delta variant ― is an uphill battle when both patients and their doctors are learning about a disease at the same time, Alba said.

“A one-size-fits-all approach does not work with COVID,” he said. “Everybody’s experience is unique. There is not one monolithic diagnosis of ‘long COVID’ and many of the persistent symptoms can have overlapping spectrums of disease like myalgic encephalomyelitis, a disease also known as chronic fatigue syndrome or ME/CFS.”

Unfortunately, there is no silver bullet treatment that works for everyone.

“Some treatments help others, some treatments are neutral, and some treatments can make people feel worse,” he said.

What can help, across the board, is having access to medical professionals who validate COVID long-haulers’ experiences, whether the symptoms are physical or mental, Alba said.

It can also be reassuring to take an active role in your care management if you’re dealing with COVID-19, said Chelsea Wages, a resident in counseling at Thriveworks in Colorado Springs who specializes in working with families and individuals impacted by a diagnosis.

“Write down questions, concerns or fears you have before your appointments,” she said. “Bring up the information you are uncertain about to your trusted health care professional and ask them to help point you in the direction of accurate medical evidence.”

If you have questions about available treatment options or would like a second opinion, by all means, don’t settle for just one doctor, Wages said. Certainly don’t settle if you’re facing skepticism from the doctors you’re seeing or if you have been waiting months for diagnosis and treatment.

It's vital to find a trusted health professional who validates your experiences, said Chelsea Wages, a resident in counseling at Thriveworks in Colorado Springs.
Solskin via Getty Images
It's vital to find a trusted health professional who validates your experiences, said Chelsea Wages, a resident in counseling at Thriveworks in Colorado Springs.

Many people HuffPost spoke with said finding Facebook and other online groups for COVID long-haulers has helped them cope and compare diagnoses and general outlooks.

Use online resources to your advantage and conduct personal research, but do so in moderation, Wages said.

“It is important to recognize when an influx of information has become a catalyst for anxiety,” she said. “If you’re anxious, limit your time researching and take steps to actively participate in your recovery by creating a space where you feel supported, safe, and comfortable.”

Stress and anxiety create additional challenges for the body during recovery, so it’s important to find ways to mitigate these stressors as best you can, Wages said. Practice stress management techniques and solution-focused mindfulness.

Dedicate some time to mindfulness each day, whether it’s deep breathing practices or doing meditation.

“Mindfulness can also be achieved through connections or activities that bring you comfort and an increased sense of self,” Wages said, like an online or in-person yoga class.

Lean into friends and family who continue to validate what you’re going through and don’t mind accommodating your unique needs right now.

Friends of that caliber have given Robin, the aforementioned community educator, the strength they need in their darkest moments.

“I’ve worried that because my issues aren’t immediately visible that I will have to fight both for doctors and people in my life to believe this is something I’m going through,” Robin said. “But my closest friends have really shown up for me. They’ve cooked me meals. Called me. Sat with me.”

“Getting back to normal” doesn’t feel like something Robin can access right now ― especially with the delta variant emerging ― but they’re grateful they have their inner circle for support.

“I’d say if you’re dealing with long COVID, try to find hope in your community, or even in the online disability or long hauler community,” Robin said.

Wages agrees.

“Navigating a complex illness can feel very isolating and it is helpful to know others have experienced similar symptoms, emotions, and treatments and can help encourage your treatment and recovery journey,” she said. “Don’t be afraid to reach out for that emotional support right now.”