Living with Long COVID: What it’s Like to be Diagnosed with the Debilitating Disease

From long covid diagnosis to treatment

No single test can determine whether a ­person has long COVID. Doctors typically diagnose long COVID by reviewing the ­patient’s health history and current symptoms and trying to rule out other causes. A positive COVID test is not required, as someone could have been infected without knowing it, then experience strange symptoms later, Patel says.

Though there are many ongoing clinical trials on long COVID, there is no umbrella treatment. Primary care physicians address what they can, then call in specialists — such as a cardiologist to handle arrhythmia or a therapist to treat anxiety — for more targeted care. There are long COVID centers around the country where teams of professionals work to help patients through their unique symptoms.

“Because the effects of COVID are so wide throughout the body and mind, there will not be a single treatment for all long COVID issues,” Baratta says. “This is ­going to be treated by many different types of providers and specialists, and it will be treated, often, symptom by symptom.”

Long COVID is recognized as a disability under the Americans with Disabilities Act if it substantially limits one or more major life activities. About 200 symptoms fall ­under that umbrella, Patel says. Here are some of the conditions we’re learning can linger months and, in some cases, years beyond an acute COVID infection. If these or other health changes seem familiar, consult your primary care physician.

1. Extreme fatigue

It’s common to experience fatigue when your body is busy fighting off an illness. But some people still struggle with fatigue long after their initial COVID infection. In fact, a lack of energy is the number one symptom reported by long COVID patients. In some, this can be diagnosed as chronic fatigue syndrome, which has been on the rise since the start of the pandemic, Baratta says. He defines this as “a disabling level of fatigue that severely limits daily activities.”

This lingering fatigue may be due to limited production of energy within the muscles caused by damage to the mitochondria from a COVID infection. It can happen to anyone — no matter their level of fitness before infection. “I’ve treated patients who have been triathletes and now may only be able to do 15 or 20 minutes of exercise a day, when they’re used to running and swimming miles at a time,” Kaplan says.

He recommends starting slow and pacing yourself with everything you do around the house, “doing shorter intervals several times throughout the day, rather than trying to do everything at once.” Whether it gets better depends on the individual. Some people’s symptoms clear, and some people may battle them indefinitely.

2. Shortness of breath

An analysis of chest CT scans from 144 patients ages 27 to 80 found that more than one-third of people hospitalized with a previous COVID infection had lung scarring and thickening two years after coming into contact with the virus. Even patients with milder cases who walked away without scarring can experience changes in their breathing.

“Some research shows that people ­after COVID start to take shorter, shallower breaths,” Baratta says. “This essentially causes a type of hyperventilation they are doing without even recognizing it, not getting good fresh air deep into the lungs, and [this] can lead to shortness of breath.” ​

Doctors have found success using respiratory exercises to help patients relearn slow, deep breathing.

3. Cognitive changes

Difficulty concentrating, spaciness and forgetfulness are just a few of the brain challenges COVID can bring on. These can last for weeks or months or — in some with long COVID — become an everyday occurrence that lasts indefinitely. COVID may linger in a person’s gut long after an infection, altering their microbiome and hindering the body’s ability to produce serotonin, leading to cognitive disturbances.

COVID may also disrupt the blood-brain barrier, allowing chemicals or molecules in the rest of the body to enter the brain blood circulation and potentially lead to brain fog, Baratta says.

One study found that 30 days after testing positive for COVID-19, people were at greater risk for cognitive decline, as well as for mental health disorders including anxiety, depression and stress. Another study found inflammation in the brains of people with mild to moderate COVID-19 was similar to the effects of seven years of aging. Doctors are leading neurologically affected patients through cognitive rehabilitation exercises that show promise in reducing symptoms.

4. Depression and anxiety

“Mood-related disorders are one of the top five issues that happen to people after COVID,” Baratta says. There may be a direct relationship between the virus’s effect on the brain and mood issues. A 2021 review of eight studies found that 12 weeks after a COVID infection, 11 to 28 ­percent of people had depression symptoms, and 3 to 12 percent of those individuals reported their symptoms as severe. If you’re feeling more stressed or down after catching COVID, tell your primary care physician, who can refer you to a therapist. Or visit the American Psychological Association’s search tool at locator.apa.org to find a qualified therapist in your area.

5. Sleep disturbances

Nearly 40 percent of people with long COVID have reported major changes to their sleep patterns. One study looked at 1,056 COVID-19 patients who did not have a severe enough infection to require hospitalization. Of that population, 76.1 percent reported having insomnia and 22.8 percent severe insomnia. Sleep ­apnea may also appear post-COVID, another way the disease affects the respiratory system.

Talk to your doctor if you’re having sleep issues. A CPAP (continuous positive airway pressure) machine can help with sleep ­apnea. Lifestyle habits that prioritize healthy sleep, such as keeping consistent sleep and wake times and avoiding large meals before bed, may also help. “Post-COVID sleep has literally been a nightmare! We saw a 23 percent increase in sleeping-pill prescription during and post-COVID,” says Michael Breus, a clinical psychologist and clinical sleep specialist in Los Angeles.

6. Digestive upset

Diarrhea, constipation, abdominal pain, bloating and gas: These symptoms of irritable bowel syndrome can be by-products of an encounter with COVID. A survey of 729 COVID survivors found that 29 percent experienced at least one new chronic GI symptom six months after their infection. “There is evidence that parts of the COVID virus linger in the GI tract for many months after the initial illness, and it’s been suggested that the presence of these ongoing viral fragments causes dysfunction or problems with the GI tract, leading to mostly symptoms of diarrhea and gastric distress and discomfort,” Baratta says.

Talk to your doctor about any new digestive symptoms or seek help from a gastro­enterologist. You can keep a food journal and note if your condition flares after eating certain foods. Try cutting out those foods, then reintroducing them one by one to see what you react to, Kaplan advises.

7. New or worsened allergies

Some people who develop COVID experience allergies they never had before. One study found the risk of ­developing allergic diseases, such as asthma and allergic rhinitis, rose significantly within the first 30 days after a COVID diagnosis. This may be because one’s immune system stays hypervigilant after fighting the virus, McAuley says.

In severe cases, like Chrissy Bernal’s, this can lead to mast cell activation syndrome (MCAS), a disease that can behave like a series of severe allergies: The body’s cells become hypersensitive, causing strong ­reactions to everything from food and pollen to even a hot shower or exercise. Antihistamines and other medications may help, so talk to your doctor if you experience skin itching, a rapid pulse, wheezing or gastro­intestinal symptoms.

8. Pain

Some COVID survivors battle chronic pain, everything from aching joints to testicular pain. There is a higher risk of inflammatory arthritis, and women are at higher risk than men. One review of studies estimated that 10 percent of people who contracted COVID experienced musculo­skeletal pain at some point during the first year after infection.

Reducing stress, eating a healthy diet and exercising may ease some post-COVID ­discomfort. Massage therapy, movement therapy, acupuncture and over-the-counter pain medications may also offer relief. Your doctor can refer you to a specialist, such as a rheumatologist, who can help manage symptoms including joint pain.

Fast-moving research means new hope

If your symptoms last after a bout of COVID, start with your primary care physician, who can help treat your symptoms or refer you to a specialist. Despite previous dismissals, long COVID is more recognized these days, Patel says, and the CDC is doing its part to educate both patients and providers. And initiatives such as the National Institutes of Health’s Recover program are researching treatment options.

“In a year, things will look different, because research is moving so quickly,” says Sara F. Martin, M.D., medical director of the Adult Post-Acute COVID Clinic at Vanderbilt University Medical Center. The CDC, for instance, is funding a series of clinical trials that the NIH has in the works. This new information, Martin says, may guide doctors, including herself, who treat long COVID ­patients to better ease their symptoms.