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COVID changed their lives. What those with long haul symptoms want people to know

sueCOVID-2.jpg
Zoe Meyers
/
inewsource
Sue Shrinkle-Emmons is shown at her home in Vista, Aug. 5, 2022. She has been suffering from long COVID since contracting COVID-19 in April.

Sue Shrinkle-Emmons, had been careful to avoid COVID since the pandemic began. She took every precaution she could.

It wasn’t until April of this year that the 39-year-old eventually caught it, after she and her husband had traveled to Hawaii for their honeymoon.

COVID for Shrinkle-Emmons was like the worst flu she ever had. She spent the first few days barely able to get out of bed, bogged down by headaches, muscle weakness, malaise, and brain fog. While she was able to get ahold of therapeutics to treat her infection, these symptoms never really went away.

Late last month, she was diagnosed with long COVID, a post-viral syndrome that has been the focus of growing concern surrounding the long-term implications of the pandemic, given the life-altering effects that it has on a person and its already significant prevalence in adults.

Nearly one in five adults who have contracted COVID-19 nationwide are currently experiencing prolonged symptoms, according to recent estimates from the Centers for Disease Control and Prevention, with younger adults seeing three times as many cases of these conditions compared to older age groups.

In California, about one in four adults who have ever had a COVID infection experience long-term symptoms, according to the CDC data. Based on these rates at the state level, inewsource estimates that about 274,880 San Diegans could be living with post-COVID conditions; however, there are currently no county-wide numbers.

Experts are worried about the potential increase in the number of people who experience these conditions as new variants emerge and high rates of activity paired with minimal public health precautions remaining in place continue to push transmission rates up.

For those already living with these long-term conditions, the current surge’s impact has been profound, as reinfection poses a threat to any recovery efforts that help them return to a normal life.

“Many long-haulers live in a state of hypervigilance,” said another patient with long COVID, Kristy Malone. “We don’t have the luxury of forgetting about the risk of COVID when we live daily with the consequences of what it can do.”

A condition anyone can get

Long COVID has been the subject of mounting concern for experts as a severe outcome of an infection with the virus, given its ‘debilitating’ and sometimes ‘disabling’ impact on those who experience it.

Experts interviewed by inewsource stress that this condition is currently one of the biggest risks associated with an infection, as scientists still do not know how it develops and how to best treat it.

Unlike other severe outcomes, such as hospitalization and death, where most of the risk is associated with those who are immunocompromised or are in older age groups, experts say that long COVID has the potential to display in anybody who has been previously infected, regardless of how severe the initial infection was or their overall health.

Before getting COVID, Julia Moore Vogel, 37, was the kind of person that worked hard to make every minute of the day productive — she was a seemingly healthy and active person. Nowadays, pacing dictates her daily routine since prolonged COVID symptoms have made what she used to be able to do quite difficult.

“I used to fly across the country for meetings and then I would fly back and go for a jog for three miles or something and not think anything of it,” she said. “Now, if I wanna go anywhere, I have to plan it very carefully.”

Monica Lovato, 46, caught the virus in August 2021, causing prolonged COVID symptoms. Prior to her infection, she led a similarly active lifestyle, frequently going on runs and skating.

“I was pretty healthy … I wasn’t so worried about COVID like I am now,” Lovato said. “Now, it's totally different … I just can't find myself anymore.”

Shrinkle-Emmons, unlike Lovato and Moore Vogel, was considered immunocompromised prior to her coronavirus infection. Given her pre-existing conditions, she had been especially careful to avoid the virus — taking advantage of every vaccination opportunity as soon as it was available to her. She got her second booster two weeks before catching the virus.

Some research suggests that vaccination is effective in reducing the risk of long COVID. One recent study found that individuals who had been fully vaccinated were 15 percent less likely to develop long COVID, while chances of more severe symptoms were reduced by 50 percent.

“By all means, I should have been really protected against a bad case of COVID and I walked away with a pretty crappy case of it,” she said.

Living with an invisible illness

Not much is known about what causes long COVID and how to treat it, since there are nearly 200 symptoms associated with the condition and it displays differently in every person.

Some of the most common symptoms include chronic fatigue, decreased endurance, shortness of breath, chest pain, and decreases in cognitive function like short-term memory loss or confusion, often referred to as ‘brain fog.’

Studies have also shown that individuals with prolonged symptoms are also associated with a higher likelihood of developing mental health issues such as depression, anxiety, insomnia, and post-traumatic stress disorder.

Despite the array of ways long COVID can present, by almost every account, these conditions have had a sweeping impact on those experiencing it.

Often referred to as an ‘invisible disease,’ many individuals struggling with post-COVID conditions might appear fine on the surface but are struggling to deal through these changes — fundamentally changing every aspect of their lives, including how they operate in a social environment and what they’re able to do at work.

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Zoe Meyers
/
inewsource
Sue Shrinkle-Emmons sits at her desk in her home office in Vista, Aug. 5, 2022.

Shrinkle-Emmons felt that as she tried to ramp up her work activity to get to the pace she was at before her acute infection. Her exhaustion from trying to meet where she was made it difficult for her to do any of the other regular activities she used to be able to do.

“I couldn't take our dog out,” she said. “I could barely take care of myself, like washing my face and brushing my teeth were really hard. Sometimes at night, I wouldn't be able to move off the couch because I was so fatigued.”

Taylor Brune, 31, similarly found difficulty working after getting diagnosed with long COVID. She was a certified medical assistant before catching the virus at the beginning of the pandemic.

She had tried to return to work in a hospital but could not keep up with the demanding nature of her job because the physical exertion made many of the symptoms she was experiencing worse. Because of this, Brune had to leave her job and forfeit her dream of becoming a doctor.

“I spent the last 10 years going very slowly, working in the medical field, dedicating my life, doing research, doing pre-med,” she said. “Because of my health, it changed everything. And that dream had to be given up.”

After getting diagnosed with long COVID, she became uncertain about what to do next. Without a source of income, she found it difficult to pay her bills. She had to go on state disability to help supplement her loss of income.

“I was crying myself to sleep every night,” Brune said. “(I was) praying to God, like, ‘Miracle, please,’ (because) I don't know what to do … I’m just getting sicker and I need treatment.”

Lovato, who is also a medical assistant, also struggled to balance the demanding nature of her job with her treatment. While some long COVID patients have been able to adjust their work life to better accommodate their condition, Lovato has not been able to do that, remaining on her feet for the better part of her week.

“I wish I could honestly work from home or part-time because there's times where I’m at work I can't handle it, but I have to push myself,” she said. “I wish so bad that I could financially not have to work … but we wouldn’t be able to afford it. We wouldn’t be able to make ends meet.”

Coping with these new burdens has been a challenge for Lovato and others, as mechanisms they once were able to turn to are no longer an option. Physical activity and social interaction, both methods that some people use to deal with life-altering events, are that much harder given long COVID symptoms.

Things that make interaction difficult, such as cognitive issues and low energy thresholds, worsen feelings of social isolation given the state of the pandemic in many long COVID patients — oftentimes further compounding already existing grief, depression, and anxiety.

“People who are going through this type of loss of their bodies, their health … it’s a very traumatic thing,” Brune said. “They can't do the same things they used to because of the physical symptoms … a lot of long COVID patients are learning how to grieve their past lives.”

Are you struggling with long COVID? Resources, including support groups and long COVID clinics, can be found here.

You can also email Kristy Malone, who spoke with inewsource for this story, to find additional mental health and virtual support group options.

Navigating the medical system

The novelty of the coronavirus has posed many issues for those dealing with long COVID as they seek treatment, as there is still so little that is known about the condition.

“We don’t have decades of research to understand the condition and develop treatments,” said Malone. “Doctors are learning along with us, and we are also learning how differently this condition can present for each patient.”

Given the variability in how the condition can present, many long COVID patients have struggled to get doctors to listen to them as they were seeking a diagnosis and care.

“It’s really frustrating when you are trying to advocate for yourself … trying to tell a doctor how bad you feel and what you're met with is not a lot of curiosity and trying to understand,” Shrinkle-Emmons said. “So much of the long COVID stuff is patient-led and I just needed (my doctors) to hear me.”

Some experts say that this is indicative of a system that oftentimes does not allow physicians to spend enough time with their patient to really listen to their concerns. Oved Amitay, president and CEO of the patient advocacy group, Solve M/E, said it’s these structural difficulties that led to the dismissal of issues raised or medical gaslighting.

“If you're going to a primary care physician and they will kind of do just a routine testing, they will really not identify anything,” Amitay said. “That doesn't mean that there aren't things that you can uncover, but you need to dig deeper … and really pay attention to that patient.”

Like many other people with chronic illness, hyper-awareness of their treatment is common, with many taking it upon themselves to find ways to manage their symptoms.

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Zoe Meyers
/
inewsource
Supplements that Sue Shrinkle-Emmons takes to treat her long COVID are shown on the kitchen counter of her Vista home, Aug. 5, 2022.

“We're all kind of treading water,” Moore Vogel said. “Care is very expensive and for most people it doesn't make a big difference … so I am doing the best I can with what I've got and if it gets worse, I have to change my strategy and just do what I can.”

Others have experienced difficulty in managing the load of different specialists they now have to see to deal with their individual symptoms, which places a huge financial burden on those with the condition as most insurance can only cover so much.

“It's been a series of trial and error on some things,” Brune said of her treatment. Despite contracting the virus in March of 2020, it wasn’t until August 2021 when her care really ramped up: “I just was in a state of unable to work. I went to different doctors, different specialists and they all said the same thing, ‘can’t really do much, there’s damage.’”

Only recently, some hospitals have begun to open up multidisciplinary clinics that are specially designed for COVID recovery, helping individuals navigate the complexities of their treatment in one place.

“I’ve had patients that had COVID at the end of 2020, and here we are into 2022, but they didn't know where to go,” said Dr. Jignasa Puri, team physician with the Scripps COVID Recovery Program at Scripps Mercy Hospital San Diego.

“They've been suffering for the past year going to this place and that place and this doctor and that doctor,” she continued. “Now that these programs (have) consolidated … these people are coming and they've had COVID for well over 18 months now.”

While the creation of these programs is a major step forward, experts stress that there is still a way to go in order to meet the needs of those struggling with long COVID.

“The biggest issue is that we need to just spend the resources and the effort to identify better diagnostics and ultimately better treatments,” Amitay said. “That's really what people are desperately looking for.”

‘What COVID takes from you’

COVID-19 cases have been on the rise since the beginning of May, with the emergence of additional variants of the virus. In the last few months, two new, volatile variants have pushed case numbers up even further, prompting the CDC to move San Diego County into the ‘high-risk’ tier of their community transmission tracking system.

The county recorded 48,019 positive cases in July, with as many as 2,620 cases counted in a single day. Throughout the month, there were 16 days that hit numbers that surpassed 1,660, which was the highest number of cases recorded on a single day during the Delta wave.

With high rates of transmission county-wide, experts have been worried about the potential for increased severe outcomes as a result of infection, particularly since attitudes towards the pandemic have shifted from fearing infection to the notion of inevitability.

These severe outcomes, which at the beginning of the pandemic were narrowly focused on hospitalizations and deaths, now include the development of long-lasting symptoms for some experts, given the far-reaching effect it has on a person’s life.

“Long COVID is one of the most important reasons why people should continue to protect themselves against COVID, even if they don’t consider themselves high risk,” infectious disease specialist at UC San Diego Health, Dr. Lucy Horton, said to inewsource last month. “It’s important for everyone to continue to get vaccinated, get boosted, and make choices that are safe in the current situation where we’re experiencing a surge.”

For long COVID patients, the high rates of transmission poses a threat to their care, as reinfection can set back any progress that has been made in their treatment.

“Whenever I get COVID, just any progress that I've made … it feels like it was taken away,” said Brune, who has caught COVID two more times since her initial infection.

Although every wave creates additional risk for long COVID patients, this latest surge has those with these conditions frustrated over the lack of precautions being exercised by the general public engaging in summertime activities.

“There's people out there that are, you know, are suffering, it's a serious disease,” Lovato said. “It makes me really angry inside, because so many people are dealing with this … with long COVID … and other people just don't care.”

For many struggling with these conditions, this poses an additional barrier to feel some sort of normalcy in their life since they cannot connect with people outside their homes in the same way they used to, given the risk that reinfection poses on their treatment progress.

“If people knew what long COVID felt like, they would not find it difficult to wear a mask,” Malone said. “People say ‘you can’t let COVID keep you from living your life,’ because they don’t realize that’s exactly what long COVID takes from you — the ability to just live your life however you choose.”

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