It’s been 4 years since COVID hit Michigan. For Long COVID patients, the pandemic isn’t over. • Michigan Advance

While every Long COVID patient presents symptoms differently, one of the main attributes is that patients are often deconditioned, have a difficult time maintaining their stamina and have overall weakness, Jabin said. 

In a multidisciplinary treatment, physical therapists will usually focus on strengthening and endurance as it relates to a patient’s mobility, while a speech-language pathologist will focus on cognition and brain fog and memory issues. An occupational therapist will focus more on helping patients achieve their day to day independence including dressing, bathing and grocery shopping, Jabin said. In some cases, getting back to driving has also been an issue. 

All of these disciplines, including psychology, work together, especially when a patient is more receptive to a particular treatment, or education from their therapists, Jabin said. 

The psychological component

For psychological treatment, Perra said Long COVID is approached from a rehabilitation perspective similar to treatment for a stroke or a major car accident. 

That also includes helping patients who may be frustrated with the lifestyle changes included as part of their treatment. 

“Figuring out how to pace is a really important part of the rehab process. And that is tackled with [physical therapy], right, so figuring out how to find the right dose of movement so that we can get stronger and build our tolerance for exercise and our energy stores,” Perra said.

“From a psychological perspective, how do I deal with the fact that I might be really annoyed or irritated that I have to pace myself, or I might fall into the trap of thinking, ‘Well, I’ll just push myself through it and then I’ll deal with it later,’ and then being in an extreme amount of fatigue and being down for the count for a few days also impacts my mental health and my relationships with other people,” Perra added. 

It’s not just finding the right dose of movement to help people build their strength and stamina. Addressing barriers and thought processes, and looking at how treatment can impact relationships with others, and how to receive support from people when a patient may need to rest, Perra said. 

“The hardest thing about making any behavioral change is not the act. It is what is between our ears, right? It’s our cognitive processes, it’s our expectations, assumptions, predictions, how we compare ourselves to our pre-COVID lives. And so psychology has a lot of skills to be able to recognize when we’re caught in unhelpful loops and to manage that,” Perra said.

When treating brain fog, treatment focuses on strategies to address sympathetic nervous system responses, Perra said.

“We’re understanding more and more about how the nervous system is affected by COVID in the long run. It’s not just that people are anxious, right? This isn’t caused by anxiety.  There are functional changes in how our body regulates itself. So learning strategies to downshift, how to stimulate our rest and digest response, those are really specific health psychology strategies we can learn,” Perra said. 

One of the most effective ways someone can counteract their body’s stress response is through controlling the rate and rhythm of their breath through breathing exercises and learning how to decrease muscle tension, Perra said.

The life-changing nature of Long COVID can also bring mental health symptoms, Perra said. Depression is fairly common in patients, as well as anxiety, in regard to symptoms getting worse or being reexposed to COVID-19.

It’s also not uncommon to see traumatic responses from being hospitalized or from the active illness phase, Perra said.

“From a mental health perspective, not only are we sort of mourning the loss of the life we thought we would have, at this point after COVID we’re also dealing with some of the mood changes, sleep changes, how we think about things changes. So psychology is an integral part to that treatment plan,” Perra said. 

How Long COVID has become the ‘silent pandemic’

Additionally, research suggests COVID-19 may impact serotonin production, so the illness is not only disrupting people’s lives in functional ways, but changing the way their bodies produce hormones and chemicals needed to effectively manage their mood, Perra said. 

While there’s still a lack of research surrounding Long COVID, Perra said one of the biggest changes that has changed since she began treating the condition in 2021 was the amount of evidence in support of symptoms reported by patients. 

“A lot of folks were told or given the message that it can’t be that bad, or it’s all in your head or you know, I had COVID, too, and I recovered just fine. So I think there’s a lot of folks that were coming to our program feeling like they weren’t believed,” Perra said. 

“We still lack evidence. We still lack research. There’s more and more coming out. And I’m really heartened by that,” Perra said. “Being able to tell someone, yes, this is why we think this is happening for you and there’s research to support that, it’s really relieving and validating for patients to hear that.”

Looking at the Long COVID recovery group, there’s a powerful aspect to being around others who may not share the exact same story, but can understand someone’s frustration in not being able to get up from the couch and load a dishwasher when they were previously able to run a household, Perra said. 

While we continue to understand Long COVID better, McCann said there are likely more people realizing they have some form of the illness.

“As we start figuring this out, you know, I think the best thing that people can do is just have empathy for those struggling with things,” McCann said. 

“Everybody’s going through something, right? If someone’s just like, ‘You know, I’m not feeling like I’ve got the energy for it today,’ they don’t need a motivational speech from you. They just need, ‘You know, I get it. No problem,’” McCann said. 

One of the most difficult parts of treating Long COVID is the slow progression and the different impacts the condition has on people, Jabin said. 

Perra also noted that the rate of improvement differs between patients because of how their symptom profile may be impacted by other health conditions. 

“This is what I tell folks at the beginning of our group treatments too: People get better. It takes time. It’s up and down. It’s different. I mean, this is a major medical event in your life, and we have to treat it as such. So it’s not that there’s no guarantee that we can go back to being the same person that we were before you had COVID, just like there’s no guarantee that you’re going to get back the same level of functioning that you had before your stroke, but there could be,” Perra said.

In her treatment sessions, Jabin said she works with patients on what they enjoy doing before they began experiencing Long COVID symptoms, using small goals to build toward a larger goal, like walking around their neighborhood, going shopping or seeing a movie. 

McCann said he is grateful he has been able to find a “middle ground” with his body to where he is able to travel and go hiking.

“There are days where, yeah, I’m not climbing a mountain, but I can at least enjoy the atmosphere of where I’m at, wander around the city a little bit or something. And, you know, on a good day, I can do more,” McCann said. 

“It’s not 100% of how you used to live your life and the things you used to enjoy, but you get to still do them at a level that still makes you happy,” McCann said.

McCann also shared frustration at COVID-19 denial.

“If there’s a way to be any less empathetic than denying the very thing that causes so many people to be suffering right now, I don’t know what that is,” he said.