Even if you haven’t heard of the term “Long COVID,” it’s possible you know someone who has it. This is where people report debilitating symptoms lasting weeks or even months.
Although more than a billion dollars is being spent to research Long COVID, some patients say it’s still hard to convince doctors their symptoms are real.
“I could never get a full breath. I felt I was going to die,” said Louise Salant.
For years, the 72-year-old had her asthma and acid reflux disease under control. But that changed when she got COVID in March of 2020.
Hit by debilitating fatigue, Salant spent weeks in bed. Her inhalers barely worked. COVID aggravated a condition related to her acid reflux so badly that she had to have life-saving surgery -- but her problems persisted.
“I’ve never been so tired in my entire life,” she said.
According to recent estimates, tens of millions of people are affected by Long COVID, and even though there’s no test for it, the Centers for Disease Control now recognizes it as an emerging condition – releasing guidance for doctors to help treat patients.
“Tell your doctor about your symptoms, like fatigue, brain fog, breathing issues, stomach issues,” said Consumer Reports Health Editor Kevin Loria. “They may also refer you to a specialist. For example, if you have heart palpitations, they may suggest you see a cardiologist.”
According to a CDC study of 465 people, here were the symptoms of Long COVID most often reported:
- 34%: Fatigue/weakness
- 26%: Change in smell/taste
- 24%: Shortness of breath
- 22%: Cough
- 21%: Headaches
- 18%: Problems sleeping
- 17%: Joint/muscle pain
- 16%: Cognitive dysfunction
- 11%: Chest pain/pressure
- 10%: Change in mood
- 9%: Post-Exertional Malaise (where symptoms worsen after physical/ mental exertion)
- 9%: Stomach pain
Consumer Reports suggests people suffering from symptoms look for a Long COVID clinic at a hospital or university and seek out support groups. Survivor Corps, Body Politic, and Long COVID Alliance can help connect you with providers as well as people who are experiencing the same thing.
“If your daily activities are substantially limited, you can try applying for disability benefits which may offer some protections, like job leave,” Loria said.
And make sure your doctor knows the diagnostic code for long COVID, which is U09.9. That way, your insurance plan may be more likely to cover related costs. While Salant’s insurance covers her new inhaler, her copay is still costly: nearly $400 for a three-month supply. She says her quality of life has improved over the last 17 months but doing some of her normal activities leads to her needing to recover in bed the next day.
“I made it through and I’m improving. I am grateful to be alive,” she said.