What Not To Say To Someone Who Has Long-Haul COVID

·9 min read
Want to help someone struggling with their long COVID symptoms? Start here. (Photo: PixelsEffect via Getty Images)
Want to help someone struggling with their long COVID symptoms? Start here. (Photo: PixelsEffect via Getty Images)

For people with long-haul COVID-19 (a range of new or ongoing symptoms that can last weeks or months following a COVID-19 infection), navigating the unrelenting health issues they’re facing is enough of a challenge. The last thing they need are words of support intended to encourage and motivate, but that really minimize and invalidate their experience.

“The majority of people in my life are supportive of what I’ve gone through since getting COVID,” Rachel Needle, a COVID-19 long-hauler and licensed psychologist at Whole Health Psychological Center in Palm Beach, Florida, told HuffPost. “But there have also been a number of people who have made hurtful comments and been dismissive of my fears and medical issues.”

The main reason you might find yourself saying unhelpful, even hurtful, things as you’re trying to support someone with long-haul COVID-19 is a lack of understanding.

“Psychologically, the less able we are to put ourselves into other people’s shoes, the less able we are to empathize and therefore offer genuine support,” said Naomi Torres-Mackie, clinical psychologist at Lenox Hill Hospital in New York City and head of research at The Mental Health Coalition.

Another reason is fear. When you feel you don’t have the “right” words to support someone and you let that fear get the best of you, it can become a self-fulfilling prophecy. “Fear can make you avoid the topic altogether, blurt things out without thinking it through or engage in toxic positivity,” Torres-Mackie said.

To help break this cycle, HuffPost spoke with people experiencing long-haul COVID-19 to find out which shows of support have the opposite effect, as well as therapists for advice on what to say instead, so you can forge a legitimately supportive bond.

Don’t say: ‘Don’t worry, everything’s going to be OK.’

This kind of statement conveys both toxic positivity and false reassurance. “Comments like this often minimize what the person is experiencing,” said Nicholas Hardy, a licensed therapist based in Houston. It also doesn’t acknowledge “the reality of their fears and worries,” he added.

Instead say: ‘Are you worried about anything in particular?’

Opening the door for someone to share their worries and fears normalizes their feelings. It gives them the opportunity to outwardly express what they may be holding in.

“When we’re unable to express ourselves in a safe environment, we either conceal our own thoughts and feelings or express them in an unhealthy way,” Hardy said. “In either case, the impact on our social and emotional well-being is damaging.”

Don’t say: ‘At least you recovered.’

Not only is a statement like this unhelpful and minimizing, it communicates a lack of understanding about the disease.

“Long-haul COVID is an ongoing set of symptoms, so there is no recovery — rather, there’s an unknown and unpredictable impact on various aspects of health, marked by points in time where symptoms are less and perhaps more manageable,” said Shemiah Derrick, a COVID-19 long-hauler and licensed professional counselor in Chicago.

Instead say: ‘I can’t imagine what that must have been like. What do you think things will be like for you going forward?’

Something like this is steeped in empathy and acknowledges the past, present and potential future impact COVID-19 will have on them. Meanwhile, “the curiosity in the question demonstrates a desire to understand and learn more,” Derrick said.

Validating a person's experience can be a supportive way to help someone struggling with long-haul COVID-19. (Photo: MStudioImages via Getty Images)
Validating a person's experience can be a supportive way to help someone struggling with long-haul COVID-19. (Photo: MStudioImages via Getty Images)

Don’t say: ‘At least you have…’

Similarly, statements that emphasize all of the wonderful things the person does have going for them can be invalidating, ultimately minimizing what they’re going through instead of perking them up.

“Focusing on gratitude can be helpful, but when you’re too quick to jump to that, it can come off like you’re downplaying the importance of the difficulties they’re experiencing,” Torres-Mackie said.

Instead say: ‘It must be so hard to have to deal with this.’

This acknowledges the difficulty and that you’re not shying away from it — that no matter how difficult things get, you’re there for them, Torres-Mackie said.

Don’t say: ‘I know how you feel. I had similar symptoms once and it was awful.’

“We’re all guilty of trying to establish connection by using ourselves as an example,” Hardy said. “However, this often shifts the focus towards us instead of the person currently experiencing long-haul COVID.”

You might feel like you helped the other person by attempting to relate, but it was actually you who benefited most from the interaction.

“When we use ourselves as the example, subconsciously, they may compare their experience to ours or question their own thoughts and feelings,” Hardy said. “If you truly desire to be there for someone, be there for them entirely.”

Instead say: ‘What has this been like for you?’

This focuses our attention and allows them to assess their experience on their own terms.

“By gently reminding yourself it’s not about you, you proactively protect yourself against unhealthy responses, such as overtalking, internalizing or subconsciously minimizing their experience,” Hardy said.

Don’t say: ‘My friend contracted COVID and said it was like XYZ, but they’re doing fine now.’

This can feel like there’s an attempt to understand, but that attempt quickly gets eclipsed by a description of — and comparison to — someone else’s experience with COVID-19 over actually listening to the person who’s trying to open up to you.

“When you round things out with something like ‘they’re doing fine now,’ that’s great news for them, but a lot of people aren’t — and with long-haul COVID, you don’t know what new challenges are around the corner,” Derrick said.

Instead say: ‘My friend contracted COVID and said it was like XYZ, but I recognize everyone’s experience is different. What was yours like, and how are you feeling now?’

This communicates some facts, an attempt to build an understanding bridge, and stays connected to the person you’re speaking to.

Keeping your focus on the difficult symptoms and emotions your friend is experiencing now, rather than a potential positive outcome or “end” to their symptoms that may not happen, shows “you see their experience as valid and will be there for them to address the hard stuff, not just the easy stuff,” Torres-Mackie said.

Don’t say: ‘But you look fine.’

“Some people see photos of me doing outdoor activities and working out and say things like, ‘You look fine, so you must be better,’” Needle said. “But just because you see me smiling and engaging in activities at certain times doesn’t mean I’m not struggling at other times.”

She still has an oximeter in her purse (and every other room in her house) and still uses a spirometer to improve her lung function. “I’m wearing a heart monitor as we speak,” she said.

Sure, there are days she feels well, but there are also days she doesn’t. “I don’t always share that with others,” she said. “It’s important not to make assumptions.”

These assumptions can result in pushing your friend or loved one into doing things they’re either uncomfortable with — especially given their experience with long-haul COVID-19 — or straight-up don’t have the bandwidth for, ultimately saddling them with feelings of guilt and isolation when they have to turn you down.

Instead say: ‘Would you feel up to making plans?’

Because each person’s experience with long-haul COVID-19 symptoms is different and ever-evolving, ask them first if they’d feel up to making plans, then let them decide what those plans might look like.

“It’s important that people are supportive, empathic and compassionate toward those who are experiencing long-hauler symptoms,” Needle said. “Respect and honor their boundaries with regards to what they’re comfortable with.”

This validates their experience and staves off feelings of isolation, because they know you’re legitimately in their corner.

Offer to look into treatment options or help someone find care. (Photo: Maskot via Getty Images)
Offer to look into treatment options or help someone find care. (Photo: Maskot via Getty Images)

Don’t say: ‘It’s likely happening because you had COVID.’

“This is an interesting one, as I’ve heard it from actual medical professionals,” Derrick said. “While I can appreciate the attempt to account for potential long-haul symptoms, this was often the end of the sentence, as if there was no further action to be taken or information to be obtained, because COVID.”

Instead say: ‘Let’s look into it.’

Yes, COVID-19 may have caused or contributed to the latest symptom your patient or loved one is experiencing, but it could also be the result of something completely different. To write off every symptom or feeling they have going forward as an aftereffect of COVID is dismissive and cold.

Looking into it anyway, or emotionally supporting your loved one as they take the steps necessary to look into it, communicates attentiveness, Derrick said.

Don’t say: ‘I hope you feel better soon.’

It seems like a nice thing to say, right? But really, it can minimize a long-hauler’s experience.

“This is a long process that might not go away soon, or ever,” Needle said. “Because COVID is still so new, there’s so much unknown about what long-haulers will experience in five, 10, even 15 years. We just don’t know.”

Instead say: ‘I’m here for you.’

Being there for your loved one as they navigate long-haul COVID-19 can mean many things — but what’s most important is letting them decide what that might look like, since it will likely change and shift depending on what they’re currently going through.

“When we’re too effusive in offering support to someone with a chronic illness, it can feel patronizing and leave the other person feeling alone and misunderstood,” Torres-Mackie said. “There’s a difference between offering help and making the assumption the person definitely needs help.”

If you’re worried about saying or doing the wrong thing, checking in with a simple, “Is there anything I can do for you?” can go a long way in not only showing support, but in validating their experience, Needle said.

The same goes for filling in any blanks they’ve expressed they’re struggling with, like lacking the energy to pick up groceries or feeling winded when they take their dog for a walk.

It’s not on you to make them feel better — and making that your mission could pressure them into pretending they do for your sake. But if you focus on little, no-strings-attached chores or errands that make their day to day easier and lighten their load, you might end up doing just that.

This article originally appeared on HuffPost and has been updated.

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