Long COVID has affected many people around the world. Tune into this week’s episode of Money, I’m Home as Lynne is joined by Dr. Jim Jackson, author of Clearing the Fog: From Surviving to Thriving, to discuss the effects of long COVID, how to live with it and how to move forward with a meaningful life.

 

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0:00:06.8 Lynne Jarman-Johnson (LJJ): Money, I’m home. Welcome in. I’m Lynne Jarman-Johnson with Consumers Credit Union. From finance to fitness, we have it all. And today we have an extremely special guest. You’re a native of West Michigan, yet you’re also the Director of ICU recovery at Vanderbilt University, and here you are at Consumers Credit Union.

0:00:27.3 Dr. Jim Jackson (DJ): Both true. Yeah, it’s lovely to be here. My family’s been here since 1840 or so. So, a long time, and I’ve been in Nashville for almost 25 years, but Michigan will always be home.

0:00:39.5 LJJ: Well, we so appreciate. This is Dr. Jim Jackson, and I’ll tell you what, I have been reading his book called, Clearing the Fog, and if any of you have a family member or you yourself has suffered from any long COVID symptoms, you’ve got to get this book, and I am just honored to have you here today to talk about what’s going on in recovery.

0:01:01.7 DJ: Yeah, thank you. I think this is probably a podcast number, 21 or 22, I lost count at some point, but I think the word you used recovery is really important, because I think there’s this idea that you get COVID, you get long COVID, and you never recover from long COVID, and I think that’s a really pessimistic idea. There are a lot of people, I know them, who recover from long COVID, not everyone does, but many people can. Many people can recover fully and many people can recover substantially, even if they’re not exactly who they were before.

0:01:33.4 LJJ: Tell us a little bit about your background and how did you start getting into this? And then all of a sudden the pandemic hits, what a grace that you’re giving people to say, we can think positively.

0:01:45.0 DJ: Yeah, thank you. Back in 2000, my wife and I moved from LA to Nashville, and that was a great move. Living in LA turned out to be great because everybody else complains about traffic in Nashville and I don’t. I don’t because it’s so much worse in LA, so that’s been a good perspective. But seriously, in 2000, 2001, I started doing research on survivors of intensive care. People who were profoundly ill in the ICU, and we noted that after they’d been in the ICU, they had brain injuries, they had lung problems, they had mental health issues, and we started working on trying to figure out how to help and support them. And I was doing that, I was doing that happily, and we were having great success doing that when the pandemic emerged. And little by little, ICU survivors with COVID, started coming to my clinic, and before long, COVID patients who had never been to the ICU, they found out about the work we were doing and they said, “Can we come too?” And it was a little bit like the movie Field of Dreams. Where if you build it, they will come. We built a program and people just started coming and coming and coming, and they continue to come, and I think the work we do has been, as you referenced, really hopeful. It’s been really helpful, and it’s been positive and it’s been empowering for patients.

0:03:05.2 LJJ: Well, your book has some wonderful stories of people who suffered in so many different ways, and I think that’s where it’s okay to say, You know what? Your symptoms might not be like the next-door symptoms that someone might have, but it’s really important to have that transparent communication.

0:03:23.5 DJ: It really is. It’s important to be transparent, it’s important to create an environment where you’re welcoming people to put it all on the table. Very often our patients hold back a lot because they worry, especially in the mental health realm, that if they acknowledge having anxiety or depression, they’re going to be really stigmatized. So, our approach is really different, we want you to come as you are, if you’re debilitated, tell us you’re debilitated, if you’re depressed, we’re not going to shame you. We are going to try to lay out a very strategic and crucially, a practical plan to try to help you get better, and if you can’t get better, we’re going to help you find a way to accept that, and that’s going to be empowering too.

0:04:05.6 LJJ: One of the chapters has a conversation about a Zoom call that you had. I just had to pause because one of the patients that you had couldn’t even sit up. Right. But that was okay, it was okay to have that conversation with, as a group where you’re not shaming somebody for what they can’t do that day.

0:04:26.1 DJ: Right, we see that pretty regularly, we turn on the Zoom and people are laying in bed, they’re laying in a recliner sometimes surrounded by their dog and a pillow, and Brene Brown, famous author, she says showing up is a skill. Just showing up is a skill, and so we affirm our patients, just showing up is actually pretty meaningful and special, and if that’s all you can do on a given day, depending on your situation, you’ve done a lot, and our patients, of course, they do far more than show up. They lean into really hard things, and I think what they learn is that recovery isn’t easy. But at the end of the day, it’s worth it.

0:05:06.4 LJJ: One of the things that you’re going to find while reading this book is the differences of patients and their level of expertise in what they did, and now all of a sudden their life is drastically changed. What happens when an individual goes to their family physician, or maybe even goes into ER and they’re treated like, this is… No, this is not real.

0:05:30.3 DJ: It’s incredibly disrespectful, I think. And it happens so much. It happens even now, which is shocking, but it does. And you just referenced this, so many of our patients are from wide-ranging professions, but many of them in the words of Will Rogers, are doctors, are lawyers or Indian Chiefs, they’re not making up symptoms, they’re not angling for disability, that’s not what they’re wanting. So, the idea that they go to an ER and they’re presenting with some obvious complaints and someone says some version of, it’s all in your head. Maybe they don’t say it quite that way, but that’s kind of what they say often, it’s incredibly demoralizing for our patients. Disrespectful, I think, and often what it does is it harms them so badly because they decide I’m not going to go back to the doctor again because I don’t want to be told for the second time or the 50th time, it’s all in your head. So, there are a lot of people who could be getting treatment, but they don’t because they’ve been burned effectively.

0:06:33.2 LJJ: Doesn’t that just lead into the conversation which you mentioned, which is mental health and building that group that can care for you to try to help you? But you know, one of the things that you talk about in your book is that there literally is a prescriptive plan, it’s not just, here’s a story, feel better, you literally will work with each individual to find out what it is that we can do to help you personally.

0:06:58.7 DJ: Yeah, that’s right. In the mental health realm, I think there are a lot of effective treatments for things like PTSD for OCD, which has emerged, in a lot of people with long COVID for anxiety, and I think the idea that these treatments work is kind of a best kept secret. There are a lot of people who don’t pursue mental health treatment for a lot of reasons, but one of the reasons is they don’t think there’s a lot to it, and the truth is, if you have debilitating anxiety, there’s a path to help improve that, if you have significant PTSD, there’s a path to help improve that, and if you get the right treatment, you’re going to get better.

0:07:35.7 LJJ: You see it every day.

0:07:37.1 DJ: I do see it every day, and part of the reason I know that, I talk about this in my book a lot is that in 2019, I developed my own chronic illness, I developed OCD. And really turned my life upside down. Like my long COVID friends, I didn’t want it, I didn’t ask for it, I wanted to get rid of it. I felt very hopeless about it until I found someone that could help me navigate it, and in some ways, I see my role very much as a navigator, the patients are doing the work, they’re the ones that bring the courage to the table every day. We help them find a lane that they can operate in, and we help them navigate a lot of hurdles, and when we do that, we see them improve.

0:08:17.5 LJJ: I love the fact that you say, if a treatment plan isn’t working, acceptance actually can be a very healing thing.

0:08:25.6 DJ: Yeah, I think acceptance has a little bit of a bad rap. I think a lot of people take it to mean, “Hey, I love having long COVID” or whatever the illness is we’re talking about. “I love having MS,” doesn’t mean that at all. It simply means that if it’s not getting better and this is where I’m at, what are my options. I’m going to find a way to pursue a meaningful life with this. So I talk a bit in the book about the four As of acceptance, and those include things like you acknowledge it, you allow it, you accommodate and make room for it, and then ultimately this is no simple thing, you learn to appreciate it, and people are not happy initially at the thought of appreciating long COVID, but often they begin to recognize that there are some beautiful things happening in their lives that perhaps the illness has given to them, and when people reach that place, it’s really lovely to see.

0:09:27.0 LJJ: You know, we mention the fact that there’s so many different symptoms that can come in with long COVID. Where is it when somebody should really take stock and say, this is crazy?

0:09:38.2 DJ: Yeah. I think there are two key considerations, and there are a lot of symptoms. There have been papers published that point out that some patients report 100 symptoms, that would be the exception to the rule, but we see that at times. Typically the symptoms occur in what I call the unholy trinity of symptoms, those are mental health, those are physical, which is usually fatigue and those are cognitive, and I worry about those symptoms for two reasons. I worry about them, if they persist, that is, now it’s been three months, now it’s been six months, they’re not going away. And if they are severe enough that they’re impeding your daily functioning, if they’re not doing that, it’s not that you don’t need to be concerned, but often people won’t seek treatment, but the indicator for treatment is they’re persisting and they’re significant enough that they’re disrupting.

0:10:28.1 LJJ: So, you mentioned treatment, and so many people, I don’t even know where to start, and if they start with someone who says it’s all in your head, how do you get past that and tell us about your clinic.

0:10:39.5 DJ: I should point out, there are some things that are hard to treat, right? There are some things we don’t know how to treat. Fatigue has been one that has been a consistent challenge for a lot of physicians, there are many patients who developed long COVID in 2020 and they’re still profoundly fatigued, but we do treat what we can treat, and the things that we can treat in particular are cognitive problems which I prefer to call brain injuries and mental health challenges. And I think for your listeners, one of the great places to start wherever they live is with a long COVID clinic. There are about 300 long COVID clinics in the United States. In Michigan, I believe there’s one at Henry Ford Hospital, there’s one at the University of Michigan. There may be others also, and the people that lead long COVID clinics are the experts in long COVID. Now, they’ve been learning on the job, because this phenomenon is only three years old, but if you can find a long COVID clinic, that’s the right place to start and you typically want to be careful about a few things, you want to take a very thorough history, take it to the doctor, you want to take a family member or friend with you because you may be having cognitive problems, you want to make sure you can report all of those accurately, you want to make sure you can characterize as you’re leaving what the doctor told you, but a great place to start is a long COVID clinic.

0:12:01.9 LJJ: Tell us about what you have started and your success in the hope that you’re bringing.

0:12:06.6 DJ: Sure, so we have a long COVID Clinic at Vanderbilt, staffed by a number of excellent internists and also a physiatrist. A physiatrist is a physician that specializes in Rehabilitation Medicine and rehab, I think, we think is a key to this when properly delivered along with things like speech and language pathology treatment, occupational therapy. In our particular case, a lot of the work that we do is group therapy. So, we have right now about five support groups, we see about 100 patients a week, actually from around the world, and it’s really helpful. We have a waiting list of 60 people, it isn’t only support groups, but that’s a powerful recipe when people get together and they connect with other people who get them, there’s incredible healing, there’s profound healing that occurs in that context, so that’s one big thing we do.

0:13:03.0 LJJ: Well, I can’t thank you enough for connecting with us, and if you’re interested, it’s Clearing The Fog: From Surviving to Thriving with Long COVID. And I’ll tell you what, not only do we have someone here who is local, but he is also making an impact around the world. Thank you so much.

0:13:20.5 DJ: Thank you, and I would say if any of your listeners want to reach out to me if they’ve got questions. If I hear from every one of them, that could be a challenge. But they’re welcome to contact me, I’ll be glad to follow up.

0:13:31.9 LJJ: That is awesome, thank you so much.

0:13:33.7 DJ: Go blue.

0:13:34.1 LJJ: Ooh.

0:13:34.9 DJ: Go Green.

0:13:37.8 LJJ: Go Green. Go Broncos. [laughter]

0:13:40.1 DJ: Better yet, go Broncos. Thank you.

0:13:42.2 LJJ: Thank you so much for listening. Hey, Jake Esselink, thank you for your production skills, we hope everybody has a safe week, and don’t forget, it is okay to ask your doctor for help and also to continue on, if you feel like you’re struggling, we definitely want you to get better.

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