How to Support a Loved One Who Has Long COVID
As mask requirements are starting to lift, people are heading back into the office, and we’re getting back to a sense of “normal,” for many experiencing lingering pervasive and debilitating symptoms following a COVID infection, “normal” is a feeling they wish they could back to as well.
While most people recover fully from COVID-19, more and more people are having a harder time recovering. The condition is referred to as “long COVID” and those affected by it are referred to as “long haulers.” According to the World Health Organization, long COVID has an extensive list of symptoms (more than 200 have been reported), but shortness of breath, cognitive dysfunction, which many people call brain fog, as well as fatigue, appear to be the top three symptoms.
But possibly one of the most frustrating aspects of the syndrome is the fact that there is no clear end date. The duration of the condition can range anywhere between three months to potentially nine months and there are no comprehensive treatment plans to address symptoms quite yet.
Pair that with a societal apprehension to believe those suffering from relatively “invisible” illnesses and it creates a perfect storm, says Ken Jones, a psychologist and director of behavioral health at Texas Health Arlington Memorial Hospital.
“We’ve seen quite a few clients who have anxiety and depression related to long COVID. Many have to go on short term or even long term disability due to pervasive symptoms,” Jones explains. “Not being able to take deep breaths or having trouble breathing can cause anxiety and panic on its own, so mix that in with the drop in performance that can come about due to mental fog and fatigue, then the fear of losing your job because of it, and the added fear of not knowing how long this is going to last…it can really take you to a dark place.”
Jones says support from those around them can go a long way in helping those suffering from long COVID. Below are some ways he says you can best support someone who is dealing with the syndrome and its symptoms.
Listen and Believe
One of the biggest struggles long COVID sufferers bring up is the problem of not being believed.
“We are fighting to be believed, let alone get help,” says Lauren Nichols, a patient advocate and vice president of Body Politic, which defines itself as a global network of chronic illness allies and health and disability advocates.
As a result of both her chronic symptoms and the stigma of not being believed, Nichols says she now suffers from depression. Unfortunately, Jones notes this is common among long COVID patients, and individuals who currently suffer from or have a history of suffering from mental health issues, are going to be at a higher risk of flareups or spikes in these disorders, anxiety, depression and PTSD.
Check in with them on a personal level and if they open up to you, actively listen. Active listening requires more than passively listening to someone. It involves engaging by showing empathy and support. Active listening not only shows them that you care about what they have to say, but it helps them feel seen and heard.
Avoid interrupting, finishing their sentences, or filling in their pauses. Let them share in their own time and their own words, even if it takes them a while to get the words out. Although it’s going to be tough, try to focus on what they’re saying, not what you want to say to them.
It can also be helpful to take a moment to pause, collect your thoughts then summarize out loud what they’ve said to make sure you understand fully and there’s no mix-up. Something along the lines of, “It sounds like you’ve been feeling hopeless lately, and you can’t find the energy to do anything, even though you’re trying. Is that right?
Then offer compassion and validation. This can sound like:
- “That sounds pretty rough, but I believe you and you’re not alone. I’m here to support you in any way I can.”
- “I imagine feeling that way all the time must make you feel exhausted. You’re going through so much.”
- “I can see why you feel that way. I’d feel the same way too.”
“Take it seriously. It’s not just a drop-off in performance, it’s not just someone playing up their symptoms, it’s not something someone is doing to get attention; it’s connected to something very real and medical,” Jones explains. “Let them know that you’ve noticed things have been a little different from usual, or that you’ve noticed they’re struggling a bit, and ask them how they’re doing. If you just focus on the negatives, they may keep trying to push harder to perform better, which is actually going to make things worse. It’s going to trigger a cycle of increased anxiety and panic of not being able to get your work done no matter how hard you try, and people tend to spiral from there.”
Connect Them with Resources
Look for ways you can actively help someone experiencing long COVID, whether that’s taking over household tasks such as cooking and cleaning, cooking or providing meals, running some errands for them or picking up some household items, allowing flexible working hours, or helping out with the kiddos or pets when you can. Ask them where and how they need the most support. Sometimes they may just need a shoulder to lean on, while other times they may need physical support.
Jones says his biggest fear for those with long COVID is that they may be suffering in silence.
“I recently heard about an individual who worked in a leadership role and was known for being very sharp and accomplished in her role. She developed COVID and then subsequently long COVID and eventually had to go on short term disability because of the symptoms. Unfortunately, she ended up taking her life,” Jones says. “It’s really a difficult story because it was said after the fact that she truly struggled with the loss of being able to do her job. Those are the stories we don’t want to repeat. We want to make sure these individuals are getting the support they need.”
Because of this need, Jones says Texas Health Behavioral Health is hoping to create a program in the near future supporting those experiencing long COVID and connecting them with others who are going through the same thing.
“We want to provide emotional support and some sense of community for them using a group format so that they don’t feel like they’re going through this alone,” he adds. “As we continue, we need to address the behavioral health component. I think if we can start supporting on the behavioral health side of things, while the medical side is still working to catch up a bit to come up with treatments, that can go a long way in giving people hope.”
Show Some Compassion
At the end of the day, Jones says it boils down to treating others how you’d like to be treated.
“If someone comes to you and tells you they’re suffering, where’s the harm in believing them? What risk does it pose to you to show them a bit of compassion and empathy? Kindness is free to give but priceless to receive,” he adds. “We’re all tired of COVID, everyone wants to move into something that feels normal as quickly as possible, but it’s important that we maintain compassion for those who aren’t able to back into the groove as quickly as others are.
“We just need to be kind and compassionate to one another. I know that sounds really basic but that goes a long way towards helping people feel like they’re not alone and that there is hope.”
Texas Health Behavioral Health offers a complimentary assessment and additional resources at 18 locations throughout North Texas. For additional information or to find resources, visit TexasHealth.org/Behavioral-Health or call (682) 626-8719.