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‘You’re in a room of people that get it’: Long COVID support group navigates life after COVID together

‘You’re in a room of people that get it’: Long COVID support group navigates life after COVID together

After contracting a COVID-19 infection, Nate Freeman lost hope as symptoms of long COVID lingered well after his infection.

A support group for long COVID patients that began meeting this year gave him hope for the first time since he fell ill.

As many struggling with addiction go to Alcoholics Anonymous meetings to find community, Freeman sees parallels between addiction recovery and long COVID recovery.

“You have to recognize that I’m dealing with something that I can’t control,” Freeman said. “I need to get help. I need to ask for help. I need to not do it alone.”

The Long COVID Informational, Discussion and Support group meets for two hours monthly in the Longs Peak Conference Room at UCHealth Medical Center of the Rockies, 2500 Rocky Mountain Ave., in Loveland. The group’s facilitators welcome virtual attendees with an understanding that some people may not be able to attend in person.

Dr. Matthew Light, a pulmonary disease and critical care medicine specialist for UCHealth Pulmonology Clinic in Greeley and Loveland, manages patients in northern Colorado with long COVID. Hearing his patients’ individual long COVID stories made him think about the benefits of putting a group with shared experience into the same room.

Light then decided to start the support group, acquiring the help of Michaela Martinez, a registered nurse and clinical educator with UCHealth. The two have long COVID themselves, so they can relate to and understand what patients are going through.

By the first meeting in February, patients and facilitators openly discussed their symptoms, remedies and different paths to recovery while also sharing information on the latest, often limited data on long COVID.

The facilitators allow attendees to suggest topic discussions through an online form that Light then researches and presents at future sessions.

Light and Martinez brought in registered nurse Maggie Hinz and Chaplain Ryan Wooley to help run the group, forming a team with a mix of perspectives to help bridge the gap through ideas, experiences and resources.

The Long COVID Informational, Discussion and Support group is the only group of its kind in Colorado, according to a Colorado Department of Public Health and Environment page.

The many faces of long COVID

The Centers for Disease Control and Prevention defines long COVID as a chronic condition that transpires after a coronavirus infection and remains present for at least three months.

Symptoms from a COVID infection can linger or worsen for weeks, months or even years. More than 200 long COVID symptoms have been identified, according to the CDC, including chronic fatigue, neurological problems, shortness of breath, muscle aches, joint pain and more.

Nearly 1 in 5 adults in the United States infected with COVID-19 will develop persistent symptoms classified as long COVID, according to the CDC.

A CDC Long COVID Household Pulse Survey found more than 15% of Colorado adults report having experienced long COVID. The data only calculates those who have recognized their condition as long COVID or received an official diagnosis, meaning the percentage of people suffering from the aftermath of a coronavirus infection could be much higher than reported.

The condition affects all kinds of people, and recovery, symptoms and effective treatments can vary from case to case.

Freeman and fellow Windsor resident Craig Moddelmog began attending the support group for the same reason: to find people who understand. Through the group, Freeman and Moddelmog have spotted the similarities in their COVID journey and the differences in their recovery.

Both men started seeing long COVID symptoms appear about 3 1/2 years ago after contracting COVID-19 infections before the vaccines were available. People who had more severe COVID-19 cases that resulted in hospitalizations or intensive care are more likely to develop long-term symptoms.

The morning Moddelmog was supposed to return to work after his two-week quarantine, his wife noticed he couldn’t communicate properly. He was then hospitalized with stroke symptoms for three days. Moddelmog barely remembers his time in the hospital, but on his last day, he felt like he woke up and came back to life. That was just the beginning of his long COVID story.

Freeman, on the other hand, was never hospitalized.

Both men turned to the vaccine a few months after their infection in hopes it would help with lingering symptoms, but they felt their long COVID symptoms only got worse.

Since contracting the virus, Freeman said he’s experienced just about every symptom. He’s dealt with severe stomach issues, vertigo, nervous system dysfunction, extreme fatigue, sun sensitivity and cognitive impairment, impacting his physical coordination and thinking.

Fatigue hit him the hardest. He sometimes wakes up from a 12-hour sleep to eat breakfast and then goes back to bed for a couple more hours, exhausted by the trip from his room to the kitchen.

The symptoms became so severe that Freeman had to quit a job he loved because he couldn’t function anymore. People would catch him falling at work, and he’d forget what he was saying in the middle of sentences.

Once a social butterfly who would never forget a customer’s name, Freeman feels long COVID left him unemployed and chronically fatigued.

Moddelmog also suffers from chronic fatigue, which has been identified as the main symptom after infection. Moddelmog, however, has had the fortune of holding onto his job as he battles long COVID. But some days are harder than others.

“The hardest decision you have to make some days is getting out of bed,” Moddelmog said.

Light has called the stories of every long COVID support group attendee “incredible” because most were highly motivated, high-functioning people until they were struck down by chronic fatigue syndrome. He hopes the group will help people pull through and create “happy endings” for those struggling.

Craig Moddelmog of Windsor continues to battle symptoms of long Covid after three and half years of being diagnosed. Moddelmog has been attending the northern Colorado "Long COVID Information, Discussion and Support (IDS) group" at UCHealth MedicalCenter of the Rockies. (Jim Rydbom/Staff Photographer)
Craig Moddelmog of Windsor continues to battle symptoms of long COVID after 3 1/2 years of being diagnosed. Moddelmog has been attending the northern Colorado “Long COVID Information, Discussion and Support (IDS) group” at UCHealth Medical Center of the Rockies. (Jim Rydbom/Staff Photographer) 

Validation makes a difference

Due to stigma and a lack of information about long COVID, validation becomes key for patients, Light said. It’s not uncommon for COVID patients to feel like their symptoms are all in their heads, to feel like no one understands or to hear people say they don’t believe long COVID is real.

Many of the persistent symptoms require patients to use mobility aids or rely on oxygen equipment, but plenty of long COVID cases aren’t so visible. Most of the time, people will look at Freeman and think he just needs to exercise more or do more physical therapy, he said.

These doubts and misunderstandings can leave people with long COVID feeling isolated and alone. Like other patients with chronic conditions, long COVID patients can often lose hope in the medical system as they seek care.

The cycle often starts with a visit to their primary care doctor before getting referred to a specialist who runs several tests, which can all come back normal. Medical professionals will then determine nothing’s wrong and offer a “basic Band-Aid type” of remedy, Freeman said.

This means patients must advocate for themselves even as their conditions have made functioning in their day-to-day lives difficult.

During Moddelmog’s battle with chronic symptoms, doctors have told him that his blood looks like he’s 10 years younger than his age and that he’s healthy based on his heart tests.

Freeman presents with physical symptoms, but medical professionals can’t find evidence that the condition has affected him neurologically.

“I don’t discredit the doctors, but … nobody’s trained for this, and the system is not set up to handle it,” Freeman said.

Light often wonders why there aren’t more doctors who have experienced long COVID speaking up. As a doctor with long COVID himself, Light has seen how much it means to his patients.

According to his calculations based on the U.S. population of practicing physicians between 35 and 64 years old and data on long COVID, about 88,000 American physicians have experienced long COVID. But he’s never met another doctor who has mentioned having the condition.

Even if there’s no cure for long COVID, being heard by a physician and finding somebody who will listen is just as important, Light continued. Light’s presence and understanding have been life-changing for Nate and Craig as they’ve struggled to find support from the health care system.

“Unless you’ve had long COVID, it’s really hard to understand long COVID,” Light said.

The support group further builds a community where people feel heard and validated to eliminate those feelings of isolation, uncertainty and neglect.

For the first time since his infection, Freeman has found local people dealing with COVID’s aftermath and even some who have recovered. That community has fueled Freeman’s fire to continue fighting to regain his life before COVID-19.

“Just the fact that there is one is comforting,” Moddelmog said of the support group. “Even if you don’t know a soul, you’re in a room of people that get it.”

Finding answers together

Support group attendees dealing with debilitating long COVID symptoms commonly say they’d try anything to get their health back to normal.

Moddelmog has tried supplements, IV therapy, functional medicine, an inhaler and hyperbaric oxygen therapy — which involves entering into a chamber to breathe in pure oxygen in a pressurized environment. For this treatment, he traveled to Louisville five days a week for two months for a total of 40 treatments.

Functional medicine helped make his fatigue less severe and helped speed up his rebounds. Before this solution, his crash-and-burns would knock him out for a week to 10 days before he began to rebound.

Faith and food changes have helped “move the needle” toward recovery the best, Moddelmog said. He said adopting a plant-based diet has helped him feel much better on good days.

Freeman, who’s been sober for more than seven years, said he stays in recovery if he stays away from alcohol. With long COVID, it isn’t as clear how to keep recovering, but he will try anything, he said.

He’s cycled through other restrictive diets and hundreds of supplements. He changed his diet so much that he dropped his average blood sugar levels from almost diabetic to below prediabetic.

Finding a doctor who is a good advocate, a nutritionist who believes him and a therapist who understands his past and experience with long COVID has been his biggest help.

Due to the unknowns of long COVID, Light provides research updates at each session to ensure people have reliable information and a safe place to ask questions and discuss the data.

Light conducted an educational update on nicotine’s role in long COVID at the June meeting. Non-tobacco nicotine products like patches, gums and lozenges in low doses have become an option for long COVID patients to improve symptoms and have higher levels of energy.

However, Light has not seen any convincing proof from his research that nicotine supplementation is a treatment for long COVID. He recommended those interested in trying low-dose nicotine to discuss it with their doctor.

Along with tackling physical symptoms, the group discussed the mental element of long COVID and its impact on physical health. At the latest meeting, Freeman and Martinez delivered a presentation to encourage attendees to take their lives back from COVID and keep a positive mindset.

The presenters urged patients to reevaluate their language. Instead of saying things like, “I can’t go for a run anymore,” for example, they recommended, “I can’t go for a run yet.”

“I used to always say, ‘I’m sick,’ ” Martinez said. “I’m not sick. I am recovering. If you can change that mindset … you’re going to start functioning your mindset into a better state. And it will in turn help your physical body as well.”

Freeman and Martinez also encouraged attendees to be creative with their limits and to find their “why?”

Due to his severe symptoms, Freeman has had to give up on his hobbies of aviation shows, taking photos and playing the guitar. But he has turned “lemons into lemonade” by doing flight stimulators from home. His loss of coordination in his hands impacted his ability to play the guitar, so he has become an avid music listener instead of playing.

“We’re all the same, but we’re all different,” Freeman said. “We’ll figure it out together, but you’ve got to figure it out on your own.”

Craig Moddelmog of Windsor, works in his Loveland office on June 18, 2024. Moddelmog continues to struggle with symptoms of long Covid for three and a half years.(Jim Rydbom/Staff Photographer)
Craig Moddelmog of Windsor works in his Loveland office on June 18, 2024. Moddelmog continues to struggle with symptoms of long COVID for 3 1/2 years.(Jim Rydbom/Staff Photographer) 

Growth in numbers, quality

The work that comes with the long COVID support group has been helpful for Light and Martinez’s own health journeys, in addition to being rewarding for their health care careers as well.

Light has found himself in a battle between usual work responsibilities and wanting to learn more about long COVID. The support group, however, has kept him on track to educating himself by preparing topics of discussion, gathering data and presenting it.

Before the group, Light and Martinez often don’t feel up to the two-hour session due to the drain of a regular work day. But after, they feel energized to learn more and find new ways to help.

“I checked the email as I was walking out to my car and already had emails from participants just saying how much it meant to them that we were doing this and how grateful they are for the meetings and the content that we’re providing,” Martinez said after the June 10 meeting. “Just being able to see how we’re affecting other people’s lives and benefiting them is amazing and adds that energy to keep going.”

Both Martinez and Light have high hopes for the future of the support group.

A lack of long COVID treatment, experts and programs in northern Colorado has left the support group facilitators “dreaming big” about what they want the support group to become, Light said.

The group wants to expand its efforts into a comprehensive long COVID program in northern Colorado with additional specialists, a multidisciplinary clinic and a physical therapy program.

The first meeting in February brought in about 30 attendees, and more recent meetings have grown to include about 50-60 people, combining the in-room and virtual participants, Martinez said. The full contact list, which includes those who have reached out to the facilitators or have come to the group, sits at 115 people, she added.

Those running the support group want to reach as many people with long COVID as possible. Thanks to the online opportunity, participants even come from beyond Colorado’s borders, joining from Nebraska, Kansas and Texas.

Light anticipates the group will become the main long COVID support group in Colorado with an interest from the Denver metro area to use the support group for a multidisciplinary clinic. Equally as important as the numbers, the quality of the group has grown since its origins five months ago, Light said.

“We’re long COVID patients, too, so we’re all trying to figure this out together,” Light said. “So we’re hoping the group can just continue to grow and become this self-sufficient organism.”


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