Patient advocate: For some, COVID feels like a life sentence
Long COVID makes me think about a phrase in a “Sound of Music” song, “How Do You Solve a Problem Like Maria?”: “How do you catch a cloud and pin it down?” To scientists studying long COVID, that’s what it must feel like to find the causes and treatment.
It’s estimated that, since the COVID-19 pandemic in 2020, about 400 million people worldwide have experienced post-viral illness, or what we commonly call long COVID. In the U.S., the figure is about 20 million, according to Yale Medicine.
One of them is Marianne Rubin, a North Shore resident, who lost her sense of taste and smell after her second bout with COVID, and it never returned. “I’m not alone with this particular symptom, but not many places are researching it,” she said.
She tried “smell retraining” with strong scents like lavender. If she put them right up to her nose, she could smell it. A little. “I’ve learned to live with it,” she said. “It’s affected a part of my life. I’m active, and I don’t have the symptoms of fatigue or brain fog that a lot of people have.”
When you think you have acute COVID-19, the antigen test (think cotton swab up the nose) will confirm it. Long COVID, though, is not one illness, but a collection of symptoms — more than 200 have been identified — that can come and go over time.
The diagnosis relies on doctors listening to their patients describe symptoms and ruling out other causes. The lack of a diagnostic test means some cases of long COVID may be missed, and other illnesses may be misdiagnosed.
Experiencing ongoing illness after a viral infection is nothing new. There’s also “long flu.” The symptoms are known as myalgic encephalomyelitis, or chronic fatigue syndrome (ME/CFS), which is recognized by the World Health Organization and the Centers for Disease Control and Prevention as a brain disorder. Nearly half of those with post-COVID symptoms meet the criteria for ME/CFS.
Long COVID affects people’s ability to work, so it also carries an economic impact. And the sufferers are not just the unvaccinated or those with pre-existing conditions. It appears long COVID can hit just about anybody, even children, but it’s more prevalent among women and Hispanic and Latino people.
Anytime you contract the COVID virus, you have a chance of ending up with long-lasting symptoms. The CDC says that patients who have had severe COVID infections that land them in the hospital or ICU are at a greater risk.
If you reduce your chance of COVID, you reduce your chance of long COVID. So the first line of defense against long COVID is to receive the COVID vaccine and keep up with boosters. The updated vaccine for 2025-26, based on the currently circulating strains of the disease, is expected to be available this fall.
COVID cases are already rising, and the flu and RSV won’t be far behind. Be sure to practice health hygiene habits, such as washing hands thoroughly and coughing or sneezing into your elbow or sleeve. If your child has symptoms, keep them home. If you think you may be ill, please wear a mask. The N95 mask has proven to be the most effective, but even a single-layer surgical mask is better than nothing.
What if you already have symptoms of long COVID? Hospitals and health systems are responding by setting up clinics dedicated to treatment and support.
In the Chicago area, these include Northwestern Medicine, University of Chicago Medicine, the University of Illinois medical system, Advocate Health and the Jesse Brown Veterans Affairs Medical Center.
U of I is also working with several health systems on RECOVER, a National Institutes of Health (NIH) research initiative to develop best practices for long COVID sufferers.
Chronic illnesses with a variety of diffuse symptoms have a history of being ignored by the medical establishment, as long COVID was for a time. I hope, with time and resources, the key to treatment or prevention will be found.
• Teri (Dreher) Frykenberg, a registered nurse, board-certified patient advocate, is the founder of www.NurseAdvocateEntrepreneur.com, which trains medical professionals to become successful private patient advocates. She is the author of “How to Be a Healthcare Advocate for Yourself & Your Loved Ones,” available on Amazon. Frykenberg offers a free phone consultation to readers. Contact her at Teri@NurseAdvocateEntrepreneur.com.