Not only is long-haul COVID-19 (now clinically known as Post Acute Sequelae of SARS-CoV-2, or PASC) incredibly debilitating, experiencing a health condition that didn’t exist in the recent past can be pretty isolating.
Living with long-haul COVID means someone might feel good one day only for the symptoms to hurl them back onto bedrest the next. People may also fear that friends, family and colleagues think they’re exaggerating — or have unrealistic expectations of their recovery.
As the friend, family member, or colleague of someone experiencing post-viral COVID-19, it’s important to offer support that does not inadvertently minimize these symptoms and cause people to feel more alone in their struggle. Here’s how to do that, according to experts:
First, stop talking about the illness as something that will resolve soon.
Nobody enjoys seeing their loved one sick. However, in wanting to ease that pain, you may pressure the person to move forward when they’re not ready, said Jennifer Mann, a psychotherapist and media adviser for Hope for Depression Research Foundation.
Asking “if they are feeling better yet” can have a negative effect. “Even though the intention is kind, it can come across as impatience, or an expectation that they should have been feeling better by now,” which can stir up guilt or self consciousness, Mann said.
The same goes for telling them you “hope they feel better soon” or to “get lots of rest and they’ll be back in no time,” said Lauren Selfridge, a psychotherapist who works with individuals with chronic illness.
We’re still learning what happens over time with long-haul COVID, so how long symptoms will persist remains unpredictable. Because of this uncertainty, avoid slipping into the mindset of leaving the person to recover first and reconnect when they get better, Selfridge said.
“This may not be just a ‘getting through’ period, it’s actually life happening,” so it’s important to continue to reach out to your loved one, she said.
Adjust your expectations for what your loved one can or can’t do.
“Your friend or family member may not have the same energy level or ability to show up,” Selfridge said. “And someone could have more energy than others on some days, but that doesn’t necessarily mean everything’s ‘just fine.’”
It also doesn’t mean seeing the person mainly through the lens of their illness, but seeing them as a multifaceted person who is going through challenges. They need you to modify your expectations of how much they can give in the relationship, while not defining their abilities or assuming what their energy levels are on any given day, Selfridge said.
Ask them what they feel up to doing. Sometimes people don’t know how they’re going to feel, said Lucinda Bateman, medical director of Bateman Horne Center in Utah. They may need to cancel or cut plans short at the last minute. Prepare to be flexible and give them unbridled permission to do this.
Beware toxic positivity.
Steer away from telling the person they could feel better if they adopt a more positive attitude, Selfridge said.
“The reality is that our bodies are going through something,” she explained. “And as much as psychology can positively impact the body, it doesn’t necessarily completely eradicate a medical diagnosis. So it can be really offensive and really painful to be going through a challenging illness, and have somebody saying you should be thinking about this differently.”
Mann raised several phrases people say that might seem supportive but can be invalidating when someone is still dealing with the repercussions of COVID-19, including “you’re stronger than you think,” “I know you can do it,” and “you’ll get through this, be strong.”
Ask how they are feeling emotionally, and be ready for their true answer.
Let your loved one with long-haul COVID know that you’re available if they want to chat about how it feels to deal with the issue. Make sure it’s when you have time to listen, and let them share without interrupting.
Someone might be more likely to open up and share their emotional experience because you’re more likely to understand those feelings ― like fear or anger ― even if you don’t have the illness yourself, Selfridge said.
Know that your loved one might change their mind about how they want to cope with their illness.
Someone may go through periods where they prefer not to pay attention to or talk about how they’re feeling, and periods where they want to talk about it, Selfridge said.
Saying something like, “I don’t know what to say or ask you, what would be a good way for me to talk to you about this? Do you want to talk about it?” gives them permission to change their mind, and demonstrates your willingness to respect whichever way they are choosing to cope at that time.
Initiate conversation and connection. Don’t wait to hear from them.
“Living in a body that is struggling means having less bandwidth, sometimes cognitive bandwidth or emotional bandwidth, to be extroverted in our communication,” Selfridge said.
They may not call or text as much as they used to, but don’t let that stop you from continuing to communicate with them. Continue extending invitations for virtual hangouts (and when it’s safe to do so, in-person catch ups) even if they decline them.
Better yet, find creative ways to reach out to your loved one, even if they cannot join your social hangouts, Selfridge suggested. They may appreciate receiving a five-minute recording from the friend group saying hello, or want to join the weekly Zoom call without their video on so they can just lay in bed.
Offer a hand with specific tasks, instead of asking how you can help.
Asking someone to let you know how you can help “places pressure on the person to have to come up with ways you could be helpful, and then ask you to do these things, if they do need your help,” Mann said. They may feel uncomfortable and worry about burdening others with requests.
Instead, create the action plan for them. Check if bringing over dinner for a couple of nights would be helpful, or if they’re up for scheduling a quick phone call on Monday nights, so all they need to do is say yes or no.