- Difficulty breathing or shortness of breath
- Tiredness or fatigue
- Symptoms that get worse after physical or mental activities
- Difficulty thinking or concentrating (known as “brain fog”)
- Chest or stomach pain
- Fast-beating or pounding heart
- Joint or muscle pain
- Pins-and-needles feeling
- Sleep problems
- Dizziness on standing (lightheadedness)
- Mood changes
- Change in smell or taste
- Changes in menstrual period cycles
If you have a family member or friend dealing with long COVID symptoms, you can do a few things to support them. Below we chatted with advocates, therapists, and COVID-19 survivors about the ways that you might be there for a loved one who has long COVID.
1. Believe them
Long COVID survivors have said over and over again that they long to be believed. “A lot of folks don't take COVID seriously or don't believe long COVID is real,” says Meg St-Esprit, who got COVID initially in November 2020 and now has long COVID symptoms. “They downplay what I am going through, which is so painful. Seeing people live their life like normal or say, ‘I am healthy and fine, COVID won't be bad for me,’ breaks my heart. It makes me feel so unseen.”
Lauren Nichols is a patient advocate and vice president of Body Politic, which defines itself as “a global network of COVID-19 patients, chronic illness allies, and health and disability advocates.” She says, “We are fighting to be believed, let alone get help.” People accused her of being a paid actor when Nichols started speaking out publicly about long COVID. She got death threats and was called an attention whore. “What we’re experiencing is not psychosomatic,” she says. As a result of both her chronic symptoms and the stigma of not being believed, Nichols and many other long COVID patients experience depression. Nichols says having friends and family believing her “has been life-saving.”
2. Acknowledge the daily difficulties (and help out where possible)
St-Esprit says to “show up with very concrete ways to help.” Nichols said her husband took over household tasks like cooking and cleaning when she was sick. St-Esprit says that friends provided meals, gift cards, and childcare during doctor's appointments. “All that general helpful stuff” goes a long way, she says.
You can organize a meal train for someone who is home, sick, and may not be able to cook every night. You can offer to carpool more than your share or pick stuff up when you go to the store for your groceries. Care packages or get-well cards are never a bad idea. If you live with someone with long COVID, you can give them lots of opportunities to rest and recover by taking over childcare tasks or administrative household tasks like the taxes or bills.
3. Follow CDC guidelines
The pandemic is ongoing. It is still your responsibility as someone part of a society to do your part to stop the spread of both the virus and disinformation. Nichols says she has distanced herself from young, healthy relatives who don’t believe it’s essential to mask indoors when there are immunocompromised and chronically ill people who would get very sick from infection or, reinfection. When people do not take the pandemic seriously, Nichols says it feels like, “My life is worth less than a mask to them.”
Get vaccinated and boosted if you have not, and encourage others to do so as well. If exposed or infected, follow current guidelines on isolation and re-entry. Even if your case is mild, the person you infect might end up with much more severe symptoms or a longer duration of symptoms.
4. Research long COVID
While COVID and long COVID have not been around for more than two years, there are already some resources in place for both people with long COVID and those who support them. Nichols says people need to “get on the darn internet and look up” information, adding that “the onus is on them,” not patients, “to educate themselves.”
Nichols referenced “The Spoon Theory,” a helpful way to understand life with chronic illness, when recommending ways to help your loved ones with long COVID. She suggested that loved ones research what it feels like to live with a chronic illness to get in the headspace of someone experiencing it.
5. Continue to offer emotional support
When someone is going through something big and terrible, sometimes the best thing you can do is simply show up. Be there for them in the way they want you to be and listen when they need you to change your style. Nichols says of her loved ones, “They have changed the way they love me and communicate with me.” These changes are going to look different for different people. Nichols says not to take the needs of a person suffering a chronic illness personally. Of the people who couldn’t do that, she said they’re “not in my life anymore, and that’s okay.” If you want to continue to support your loved one with chronic illness, you have to do it on their terms.
6. Advocate for long COVID resources and research
People with long COVID are tired because they have a chronic illness that makes them exhausted, and they’re tired from all the time and energy they put into being heard and understood. But you can be an advocate for people with long COVID. If it helps them, go with your friend or family member to doctor appointments and take notes. Join an advocacy group like Body Politic or donate to support long COVID resources and research.
7. If you’re a caretaker, take care of yourself, too
The cliche about putting on your oxygen mask before helping someone applies here. “Caretaker burnout is very real, so please ensure you have at least 2-3 hours of self-care every week, especially if you are offering long-term care. Shifting the attention from the ongoing needs of our loved ones to our own can feel guilt-provoking. Still, self-care is not selfish!” says S Anandavalli, PhD, an assistant professor in the Clinical Mental Health Counseling program at Southern Oregon University. Taking care of someone you love is a wonderful thing, but also make sure you care for your own mental and physical needs as well.
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