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SCCM Pod-496: Moving From Surviving to Thriving With Long COVID

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Millions of people have long COVID and may experience cognitive, mental health, and physical side effects. Elizabeth H. Mack, MD, MS, FCCM, is joined by James C. Jackson, PhD, PsyD, to discuss practical strategies to move patients from merely surviving to thriving. Drawing on research and vast clinical experience with ICU survivors with long COVID, Dr. Jackson highlights the value of acceptance, self-care, boundary setting, social support, and posttraumatic growth—coping strategies that can help patients foster meaningful lives, even in the face of chronic conditions.

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Dr. Mack: Hello and welcome to the Society of Critical Care Medicine podcast. I’m your host, Dr. Elizabeth Mack. Today, I’m joined by Dr. Jim Jackson to discuss the practical strategies that can be employed in helping patients with long COVID go from surviving to thriving. Dr. Jackson is a psychologist and the director of behavioral health at the ICU Recovery Center at Vanderbilt Medical Center in Nashville, Tennessee. He has vast clinical experience with ICU survivors with long COVID. Welcome, Dr. Jackson.

Dr. Jackson: Thank you, Dr. Mack. It’s lovely to be with you today.

Dr. Mack: Awesome. Before we start, do you have any disclosures to report?

Dr. Jackson: I have no disclosures.

Dr. Mack: Great. Well, what a few years! We have really been through it as a nation, as a world, and particularly as an ICU community. I am grateful to folks like you who are doing the hard work of, after folks get out of the hospital, really working on leading folks to that thriving state. I just wanted to talk for a bit about some of your work and your findings in terms of long COVID. This creates significant problems for many people. Are there differences between people with long COVID who survive versus thrive? If so, can you shed a little light on that?

Dr. Jackson: It’s a great question, and I appreciate your thoughtful introduction. I think, for a long time in the ICU arena, we thought that if patients survived, that was a great outcome. They’re critically ill, they’re critically ill with COVID, they’re on ECMO, whatever, fighting for their lives, and we thought, gosh, if we can just get them to survive, the battle is won. It’s a great thing when people survive. But I think if you ask patients, many would say, “If the only thing that has happened is I’ve barely survived, then I’m still barely surviving. What kind of life is that?”

The goal, I think, needs to be a little more robust than mere survival. What we’ve learned, and we learned this prior to COVID as well, is that people can thrive on the heels of really hard things. I think the starting place in some ways is to invite people to even consider the possibility, to be open to the possibility that, even though some of the consequences of their critical illness and their COVID persist, they can still find a way to thrive.

“Recovered” is an interesting word. Too often, I think, we have this notion that, unless I’m fully recovered, whatever that means, I can’t really be okay, I can’t have the rich life that I want. But as you know, many of our COVID ICU survivors are not fully recovered and they’ll never fully recover. They’ll have ongoing problems of a pulmonary nature. They may have ongoing needs for oxygen. They may have neuropathy that persists. They’re not fully recovered. Our message to them is, let’s consider the possibility that, even if you’re not fully recovered, you can still live a rich life, and you can live that rich life by following your values, by engaging in meaningful things, by pushing the limits that you often feel trapped within and realizing that you can probably do more than you think you can.

Dr. Mack: That makes good sense, and I appreciate the positive spin on that. I’m wondering, how do you find a way to accept a new normal with regard to functioning with long COVID? Should people try to accept this? Why or why not? Tell us your thoughts.

Dr. Jackson: It’s a great question. People have different opinions, patients do, about the phrase “new normal.” Some people embrace it, some people really reject it, particularly dislike it. It’s a term that I rather like. But again, the term is a little bit of an acquired taste. Whatever you want to call it, new normal or not, the fact is, for some people—and we should say this with a lot of compassion— some people are different than they were before and, even though they’re going to improve, they may not go back to exactly where they were. Many will, but some won’t.

So the question and the challenge is, what do we do for those people? At a certain point, one of the options becomes, if this isn’t changing, how can I find a way to accept it? This process of acceptance takes place in fits and starts. Five steps forward, two steps back. People are all over the map as they’re engaged in this acceptance journey. It takes some time. But with time and, crucially, with support, people often can come to grips with the fact that their life is different than it was before but still really rich.

I’m thinking of one of our patients, a really delightful young woman who was critically ill in the ICU and who lost most of the toes on one of her feet. Really limiting, really disruptive to this young, athletic woman, yet she was determined that she was not going to let this stop her. She decided that she wanted to become a surfer. Not too long ago, my colleague Dr. Carla Sevin and I received an email from her with a video. The video showed her surfing and she said, “Sometimes after a trauma, people can not only survive, they can find a way to thrive.” It’s a picture, I think, of what’s possible, embracing a new normal, not just accepting it. But it’s not a simple thing, it’s not something done on your own. It’s something, learning to accept, that’s done in a supportive community where you see other models of people who are doing it successfully.

Dr. Mack: Thank you for that beautiful example. I think many of us can relate to something similar to that and it gives us hope to know that they can find meaning post-injury and illness. Along those lines, what do you see as the role of social support and relationships and coping with long COVID?

Dr. Jackson: Long COVID is really isolating for a variety of reasons. One of them is very practical. People who had COVID and developed long COVID don’t want to get COVID again so they’re often very hypervigilant. They’re often understandably reluctant to engage in social gatherings, to get out and immerse themselves in communities. That’s the last thing that they often want to do because of the fear and anxiety they’re feeling. So there’s a practical element to their isolation.

But along with that, they often feel misunderstood. Often they feel like their encounters with physicians are minimizing. Often they feel like people are gaslighting them. Often they feel like family and friends have an attitude, which is “You’ve been sick for too long now. Just grit your teeth and get on with life. Stop complaining.” That’s how people often relate to them. They feel like they’re pretty alone and indeed often they are. That’s why we really prioritize trying to create vehicles to get long COVID patients into the community.

One way we do it at the CIBS Center at Vanderbilt is, we have a network of support groups for long COVID survivors. There are online support groups you can join that have literally thousands of people in them. Survivor Corps is probably the most famous, a couple hundred thousand members, I think. But we have peer support groups, psychologist-led, and in those groups we typically have 80 or 90 people per week who transition through these groups, and they’re hugely helpful for a couple of reasons.

One, it’s really important to have other people hear your story and affirm you, validate you in ways that nurture you, that give you dignity. It’s really important. Along with that, there’s a modeling element, that is, you’re in a support group. You see people who are giving themselves grace and compassion, you learn to do the same. You see people who are a few steps further along than you are on the recovery process; that’s inspiring. All of those reasons, I think, make these support groups really potent.

Not everyone has access to a support group, admittedly. There are literally millions of people with long COVID. In our support groups, we only see 80 or 90 people a week. But this idea that you can connect with others in some forum or other, and you can learn to be vulnerable, you can learn to receive support on the way to giving it, it’s really important. This is not a time for highly individualistic models of recovery. Patients do best, long COVID survivors, ICU survivors, regardless of COVID status, when they are ensconced and embedded in communities of supportive people who care for them. They do the worst, I think, when they try to navigate on their own. We’re not built to go it alone; we need each other.

Dr. Mack: Very important stuff and certainly a little bit out of our usual wheelhouse as intensivists. But good to hear about the meaning and the why for a lot of those social support functions. Thank you so much for that. Some people report coping with long COVID by finding meaning in their struggles and their suffering. How does this process work? What does that look like for some folks?

Dr. Jackson: Viktor Frankl, the famous philosopher, psychiatrist, Holocaust survivor, wrote the book Man’s Search for Meaning, which has been a seminal work since it was published. In it, Dr. Frankl talked about this idea that you could survive hugely difficult things. You could survive life in a concentration camp, in his case, if you could find a way to make meaning or make sense of what it is that’s happening. How you make sense of things at the end of the day is perhaps even more important according to him than the reality of what’s happening on the ground.

I think that’s a really important insight, that if our patients can find a way to make meaning of what happened, they tend to function much better. Now, it’s not for me as their psychologist to tell them what the meaning is they’ve got to extract from this traumatic situation. But it is for me to invite them to consider the possibility that they could find a way to make meaning out of this. That I think is our job to point them to the well, if you will, and ask them if they want to take a drink. Many of the patients we’ve engaged with have been quite successful in finding ways to make meaning.

For some of them, it’s anchored in religious faith, for instance. For some of them, it’s not. I’m not sure that it matters, but however they can make meaning of it is very helpful. For some of them, the way they make meaning of it is they say, “I’ve been given a new opportunity, a new lease on life that I didn’t have before. I realize now how short and precious life is and I’m going to engage it really differently than I used to.” For some, that’s a process that happens. They make meaning of it that way. For others, they begin a life of advocacy. They really throw themselves into this important cause of supporting other long COVID survivors. They engage in media. They engage in grassroots efforts. They find meaning by helping other people, volunteering. It doesn’t exactly matter what it is. It starts with an openness to the idea that I can find some meaning from this, and that that can be powerful, that can direct my life, and it can guide me.

Dr. Mack: Great. Thank you for that. I think many of us can relate to those forms of processing and finding meaning. I’m wondering, how important is it to grieve our losses? There can be a lot of loss with long COVID. I’m curious, how do folks go about this? How important is it?

Dr. Jackson: Thank you. I think if people are listening to this podcast, it’s really important that they’re not hearing—because I don’t want to suggest—that this is all unicorns and rainbows and happy dances; I mean, this is really hard. When we talk about new normal and we talk about acceptance, we have to equally talk about the fact that, for many people, what has happened is they’ve experienced a profound loss. You can’t push that down, you can’t really run from it, you can’t really deny it. I mean, you can, but that’s not a healthy way to engage it. You really have to work through it. Robert Frost, the poet, famously said, “The only way around is through.” The only way around the context of ICU survival, if you will, is to look these losses in the face to work through them on the road to acceptance. So I think it’s really important.

This grieving, it takes a long time and it’s important to allow it to take as long as it takes. You can’t put it in a box and say, “I’m setting a goal. One month from now, I’ll be done grieving.” That might work; it might not. You need to give grieving the space that it needs and you need to work through it. If you don’t work through it, it will raise its head again and again and again. But even as you’re grieving, this doesn’t have to be completely stepwise. You can be engaged in recovering and living. Those can happen at the same time.

Dr. Mack: Thank you so much for that. I’m wondering how we as clinicians can help people with long COVID find ways to cope, at least even while they’re still in the hospital as they’re experiencing these losses or potentially some of us may interact with patients once they have left the hospital. What are your thoughts on that?

Dr. Jackson: It’s a great question. I talk about this quite a bit in the book that I’ve written, Clearing the Fog: From Surviving to Thriving With Long COVID: A Practical Guide; that’s a long title. The book is being published by Little, Brown Spark. It comes out in May of this year. One of the things that it highlights is that clinicians have a clear role to play in helping nudge patients and support them and empower them along this path. I like the term “invitation” and I think that’s a key term. I like to invite patients to consider new ways of thinking about things and I think that’s an opportunity for us to help people consider the possibility that things can get better, that their lives can be meaningful and whole, even as we affirm the difficulties that they find themselves in and how profound they are.

Often, one of the key roles of clinicians, especially post-ICU, internists, primary care physicians, etc., often a key role is asking the right questions of long COVID patients, making the right referrals, and advocating for them that way. For instance, when we have encountered long COVID survivors, especially people who are in the ICU, we find that many, many, many of them have significant cognitive problems and we know that those cognitive problems reliably improve when they receive cognitive rehab. It happens, not a guarantee, but typically with cognitive rehab, they get quite a lot better. But it’s a very rare thing that their physicians refer them for cognitive rehab, I think because there’s a notion about what constitutes a brain injury and, in the minds of many people, this isn’t it.

I think these are brain injuries. Clinicians might refer you for a TBI, they might refer you for a stroke, they might refer you to cognitive rehab if you have those challenges. Very rarely do they refer our long COVID survivors to cognitive rehab and yet, when they do, they typically get better. Very rarely do we find that they refer our patients to mental health support, yet with mental health support, these patients often get better. Probably a quarter of COVID ICU survivors have symptoms of PTSD. Probably a fourth or a fifth have symptoms of depression. Many have anxiety. So, in that encounter in the clinic with a PCP, an internist, whatever, even with an intensivist before discharge, having that honest conversation, How’s your mood? Are you anxious? Are you depressed? What’s going on? etc., all of that is very important because the answers to that conversation can set into motion referrals that can be really empowering and lead to improvement in the lives of patients.

Dr. Mack: Thank you so much for all of this wonderful information. Lots of practical tips for us as caregivers. Anything that we haven’t touched on that you’d like to share with the audience?

Dr. Jackson: I think we’ve covered so much ground and had a really great conversation. You’ve asked such thoughtful questions. I just want to encourage the clinicians listening here to hang in there and continue to do good work with long COVID survivors. The work you do makes a huge difference. They need you and, with your help and appropriate treatment, they can find a way to transition from surviving to thriving. Thank you for being a part of their story, friends, and thank you for being a part of that journey.

Dr. Mack: Well, thank you, Dr. Jackson. This has been really enjoyable. I know I’ve learned a lot, and really appreciate you taking the time to be on but, most of all, for doing the good work with patients and really very incredible work, very important work. Thank you for that.

Dr. Jackson: Same to you, Dr. Mack. Thank you.

Dr. Mack: This concludes another edition of the Society of Critical Care Medicine Podcast. Thank you all for joining and remember to rate, review, and subscribe. For the Society of Critical Care Medicine Podcast, I’m Dr. Elizabeth Mack.

Elizabeth H. Mack, MD, MS, FCCM, is a professor of pediatrics and chief of pediatric critical care at Medical University of South Carolina Children’s Health in Charleston, South Carolina.

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Knowledge Area: Patient and Family Support