Long COVID could affect at least 1 in 7 N.J. adults. The symptoms can be devastating. – NJ.com

Before she caught the coronavirus, Rut Mulero was a globetrotter. She worked with the Peace Corp in Ukraine, volunteered with HIV-infected orphans in West Africa, and earned her masters from Johns Hopkins University.

But in the three years since she was first diagnosed, Mulero has been exhausted. Shes had to take disability leave from her job as a remote nurse, and dreams of hiking Machu Pichu in Peru are on hold. Even talking to friends on the phone is too much energy some days, she says.

Mulero is one of a large, but largely unknown, number of New Jersey residents who have been living with prolonged COVID-19 symptoms after their initial illness, usually called long COVID or post-acute COVID.

While New Jerseys Department of Health doesnt collect data on long COVID, a study conducted by the National Center for Health Statistics and the national Census Bureau suggests that up to 14% of all adults in New Jersey will meet the criteria for long COVID after an initial infection.

Thats at least 1 million people in New Jersey.

That is an underestimate, Lauren Stiles, the founder and president of Dysautonomia International, a non-profit advocacy group for people living with conditions of the autonomic nervous system, including long COVID.

There are a lot of people who have long COVID who never knew they had COVID when they actually had it because they were asymptomatic, or they just had a little mild thing, Stiles said. So its very hard for those people to relate their new onset chronic symptoms to COVID.

The symptoms of long COVID can be nebulous and theres no definitive diagnostic test.

Symptoms can include shortness of breath, brain fog, joint pain, prolonged loss of smell and taste, and fatigue, according to Dr. Sabiha Hussain, the director of the Long COVID Program at Robert Wood Johnson University Health and Rutgers Health.

That is absolutely the most difficult part of this, is that it is because the symptoms are so sort of, one, varied and, two, so common with other disease entities that people are having a hard time figuring it out, Hussain said.

When Mulero first developed COVID symptoms in January 2021, itstarted off like a bad flu - muscle aches, fever, headache. Initially, things seemed to get better, but weeks later, the post-COVID symptoms began. The headaches devolved into intractable migraines, and the aches seeped into her bones.

I woke up one time thinking I had broken my hips because I was in so much pain in my hips and I could barely move, Mulero said. I really thought I broke my hips while I was sleeping.

She developed visual hallucinations, her sense of taste became distorted, and fatigue became so bad she could barely stay awake.

It was worse than malaria, and malaria was pretty bad, Mulero said.

She started taking hormonal birth control pills to see that would ease the post-COVID symptoms, and for a few months it seemed like that did the trick. But in December 2021, less than a year after her initial infection, Mulero caught COVID a second time.

She hasnt been symptom-free since.

Her post-COVID symptoms are different now, Mulero said, presenting like myalgic encephalomyelitis / chronic fatigue syndrome, a debilitating condition that causes extreme fatigue.

I wake up fatigued, so my battery is already depleted versus everybody else, she said. I can only do so many not so many, so little things, during the day.

Ryan Thomas first contracted COVID in May 2022 on a work trip, and never saw an improvement.

Fatigue is just one of the symptoms that has derailed his life. Adrenaline surges cause what felt like eight hour long panic attacks, which turned into intense memory and concentration issues, he said.

Thomas has struggled to find doctors to take him seriously, and he says an application for disability benefits was denied because he sometimes feels good enough to play video games for a little bit.

Long COVID was added as a qualifying disability under the Americans with Disabilities Act in 2021.

Whenever I see a doctor, or even a specialist, sometimes even post-COVID clinics, there is a 50/50 chance that they are going to believe that what Ive said is true, Thomas said.

There just arent enough doctors to treat all of the patients, said Hussein, the long COVID clinic directo. Even during educational seminars shes run with the Department of Health, doctors would say they did not want to treat post-COVID symptoms, Hussein said.

The major thing was, the complexity of care is just too huge, Hussein said. Primary care doctors cant handle the breadth of a long COVID symptoms in the time allotted for a typical appointment, she said.

Patients who think they might have long COVID, or who have been diagnosed and need a managing physician, can check patient support groups on Facebook for recommendations of knowledgable doctors, Stiles said.

Patients are really, really struggling to find doctors who feel comfortable treating it and who actually know what to do for them, Stiles said. And even if patients can find a good doctor, some of them are not accepting new patients or have months-long weight lists.

Adding to the challenges in diagnosing and treating is the vast spectrum of symptom severity. Not every patient who develops long COVID will become totally disabled, said Dr. David Sousa, the medical director at the Atlantic COVID Recovery Center.

Weve seen people with very severe very debilitating disease, and weve seen people with more mild symptoms, and it sort of varies, he said.

Some people recover from long COVID, but the condition is too new to understand the longterm ramifications.

Hussein compared the impact of long COVID to 9/11-related cancers, saying, We thought that it would likely not result in anything but you know, weve had now we have the World Trade Center program going on for 25 years.

Our experience is that its been an individual scenario, and there are some people who struggle with symptoms for quite some time, and there are some people their symptoms dissipate, Sousa said.

Mulero and Thomas, in separate interviews, both discussed the mental health impact of long COVID and having to come to terms with a new normal.

I cant really say that I have a lot of hope for the future. I would like to be able to say differently, but I cant in good conscience, Thomas said. Its a weird thing to say, but I miss being able to wake up in the morning and I want to do something and just doing it.

Mulero isnt done planning for the future.

Some of her symptoms are getting better with new medications. Shes seeing a doctor at the RWJUH Long COVID Clinic and says shes to the point where Im a bit functional where I can actually have a life of some sort.

Her long-term disability benefits have run out, so shes going to go back to her virtual nursing job soon.

I want to climb Machu Picchu. How am I going to do that now? I dont want to think that I cant do it, she said. But I do have to understand that I do have limitations now that prevents me from doing the things that I would really like to do.

Her days still require meticulous planning to make sure she doesnt over-do it. She cant walk too far, and even just showering and cleaning the bathroom in the same day is too much. She grieves a life that she can no longer live the way she used to but that life isnt over yet.

I have to come up with a different way of how Im going to travel, how Im gonna get to where I want to go, Mulero said.

Editors Note: If youre facing a mental health challenges, youre not alone. Mental health disorders affect people from all areas of life and all ages, but are treatable. Call Mental Health Services Administrations national helpline at 1-800-662-HELP (4357) for treatment referral and information. If you are in crisis, please call the National Suicide Prevention Lifeline at 988 or contact the Crisis Text Line by texting TALK to 741741.

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Katie Kausch may be reached at kkausch@njadvancemedia.com. Follow her on Twitter @KatieKausch.

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Long COVID could affect at least 1 in 7 N.J. adults. The symptoms can be devastating. - NJ.com