There are days Meg St-Esprit can’t work. Days she can’t carpool her kids to their school and sports. And days when she thinks it might not get better.
St-Esprit, a mom of four children in Pittsburgh, is one of the millions of long COVID sufferers in the U.S. (Estimates of long COVID are hard to pin down. Some data estimates that 57% of people with COVID-19 will develop long-haul COVID. Other estimates range from 15% to 80%.) For her, the virus wasn’t a two-week hiccup, but rather a 14-month ordeal ― and counting ― as she battles ongoing effects such as anemia, brain fog, exhaustion and other debilitating symptoms.
The condition goes by many names, according to the Centers for Disease Control and Prevention, as researchers and experts work to define it and treat it ― essentially building the plane while they fly it. Post-COVID. Long COVID. Long-haul COVID. Post-Acute COVID-19. Long-term effects of COVID. Chronic COVID. Whatever you call it, it’s making pandemic life all the more difficult for many Americans. As of July 2021, the condition was classified as a disability under the Americans with Disabilities Act.
“The thing that’s really hard though is nobody knows how to support someone with long COVID,” St-Esprit said. Like many disabilities, long COVID is an invisible illness. The symptoms also vary from person to person.
If someone you love has long COVID, here are ways you can support them, according to experts:
Get familiar with the symptoms.
There is an extensive list of symptoms patients might experience with long COVID. They can include:
- Breathing issues
- Brain fog
- Worsened symptoms after activity (think breathlessness after walking)
- Difficulty concentrating
- Chest pain
- Stomach pain
- Heart palpitations
- Muscle pain
- Pins and needles sensations
- Sleep problems
- Mood changes
- Loss of taste or smell
- Menstrual cycle changes
Plus other health conditions that may pop up, like heart problems and blood clotting. Long COVID is so far beyond a lingering sickness.
Double your patience and flexibility.
St-Esprit’s children’s school has had to remind her many times about forms, library books, and other tasks parents typically take care of. It isn’t that she forgot, it’s that she never even remembers having these conversations, putting them in her calendar or getting reminder emails because of her brain fog.
“There have definitely been times where I feel people are frustrated with me,” she said.
Some of the phrasing she’s encountered, such as an email starting with “per my last email four weeks ago,” feels horrible as she struggles with recovery, she said. Sometimes she feels like her “brain is on fire” and she can’t remember a word, which has caused her kids to be frustrated, she added. She highly values friends who accommodate for this and help remind her of various events, like an upcoming school book fair.
Dr. J. Tod Olin, a pulmonologist and director of the Exercise Breathing Center at National Jewish Health in Colorado, encourages people to be patient with those living with long COVID.
“Like a lot of things in life, the most important thing is to realize that it is challenging to understand the experience and perspective of another person,” Olin said.
This might mean giving people an easy out if they aren’t up for something they’d planned to do that day, St-Esprit said. She recommended starting with phrases like “hey if you are able to handle this today ― and if not it’s OK.” This acknowledges and communicates your patience and flexibility.
“Like a lot of things in life, the most important thing is to realize that it is challenging to understand the experience and perspective of another person.”
Help them feel hope and control where possible.
It can be terrifying to be diagnosed with a brand new condition that has only has a few months of research ― not decades.
“A little hope never hurts,” Olin said. This can be as simple as reminding your loved one that scientists and doctors are working hard to come up with treatments for the condition that has “an unsatisfyingly low number of perfect answers right now.”
“While the pace of research discovery is always slow for the person experiencing problems now, it is OK to point out that the medical community is an ally, understanding of the problem, and trying to come up with innovative solutions quickly,” Olin said.
You can also ease the burden of navigating the medical system by offering to take notes at health care provider appointments, calling to make new appointments, and organizing health insurance logistics and questions — all tasks that can seem overwhelming.
Dr. Nate Bergman, a certified practitioner at the Institute for Functional Medicine and who works with the Cleveland Neurofeedback Center in Ohio, added that helping long COVID patients focus on the aspects of life they can control ― from healthy eating to getting enough sleep ― can help them refocus on a hopeful future.
Get specific in asking what they need.
“The fatigue just has really not gone away,” St-Esprit said. “Some days I have spoons, some days I don’t” is a phrase that helps her realize that some days she will have energy and some days she just won’t. (The phrase comes from a viral story by Christine Miserandino on chronic illness, which used spoons as a unit of measurement for energy.)
Helpful gestures such as doing basic chores, bringing groceries and offering to babysit can relieve a person’s fatigue a bit by giving them a chance to nap or rest.
St-Esprit added that one of the most helpful ways a friend has supported her is by asking very specific questions as to how they can help, instead of saying “let me know if you need anything.” She’ll text, “Hey, I’m going into Aldi, do you need anything?”
Olin reassures people they don’t have to overthink it: “Just cook dinner and drive the carpool for them,” Olin said.
Validate their struggle without talking about your own.
The last thing a person with long COVID needs is to hear about is how your own COVID experience just felt like a cold. This has happened many times to St-Esprit, and it’s the opposite of validating and empathizing with what they are going through.
Bergman has seen the devastating effects on patients who he said come in feeling completely deflated.
“It’s just amazing how much a loss of smell and taste can destabilize someone cognitively,” he said. He hopes the health care community, as well as family and friends, can be sensitive to the level of disruption people are experiencing.
Finally, when you aren’t sure what to say, as with any struggle, simply showing up and listening can be validating enough.