By Melissa Wagoner
At this point, most people have contracted COVID at least once during the past four years. For the majority, the experience was akin to getting the flu. They were sick for a few days, or even a week, but then the symptoms faded and they resumed their normal lives.
That’s the story for most, but not all.
“[W]e never really got better,” 49-year-old, Sarah (who has asked that her real name not be used), said of the experience both she and her, now 13-year-old, daughter had in March 2020. “The fever finally ended but the shortness of breath and headaches, along with crazy levels of sun sensitivity… made me realize something was very wrong.”
And she wasn’t alone, fellow Silvertonian, 47-year-old, Kiki Aalbue, came down with COVID around the same time.
“My heart would shoot up to 170-plus BPM,” Aalbue recalled, “then I would sit down and it would drop into the thirties. I’d stand up and it would shoot up to 60. It was all over the board… I knew that there was something very wrong…”
But, uninsured and unable to return to work, Aalbue didn’t have access to medical care. Instead, she began to reach out online, asking if anyone else was experiencing the same never-ending symptoms.
“I would have thought I was completely insane if I hadn’t had other people around who were having such unexplainable experiences,” Aalbue said, recalling the support women like Sarah provided during a time before the terms Long COVID or Long Haulers Syndrome were coined.
“I was so blessed to have friends who went down in the same wave as I did…” she said, “sharing medical information, our own experiences, and sharing what was going on in our own lives. I wouldn’t have made it through without those ladies!”
It’s a group that has continued to grow as the number of people experiencing Long COVID has increased, even as answers about what causes the condition has not.
“People aren’t educated in the severity of Long COVID and don’t understand why we can’t just get up and get on with life,” 45-year-old, Aja Gabriel – who contracted Long COVID in November 2022 – said.
“I am truly exhausted and disappointed in people telling me ‘I need to go back to work.’ Most of us can barely get out of bed in the morning… How are we going to go back to work? How could I work an eight-to-ten-hour day in the dental field without dropping dead? My speech is so slurred at times, how could I possibly interact comfortably with the public?”
Along with speech impairment, Gabriel also regularly experiences extreme fatigue, brain fog, memory loss, insomnia, muscle aches and weakness, difficulty swallowing, ringing in her ears and a sensitivity to light. And those are just the physical symptoms.
“It caused severe depression as well as anxiety for me…” Gabriel, who is now an unemployed, single mom, said. “It really takes a toll on you emotionally because there is such limited resources and treatment available to us. Not just from a clinical standpoint but financially…My whole life was ripped out from under me… I feel like I am just stuck in this evil queue waiting to see what I am supposed to do next in life. I have had so many trips to the ER and Urgent Care for things, I can’t even count.”
And those trips are often futile.
“Because LC is so new most medical professionals aren’t trained, so they think they have to give you a label,” Gabriel explained, listing chronic fatigue, brain injury, stiff person syndrome and cancer as just some of the diagnoses she has received. “Can you imagine being told these things and then just floating around in the medical system, nobody knowing where to start…?”
Forty-six-year-old, Beth can.
“My doctor doesn’t know much about it and is just now starting to refer me to specialists,” Beth (who also asked that her real name not be used) said. She described her own two-year experience with Long COVID as being filled with many of the same symptoms Gabriel experienced, along with nausea, vertigo, faintness, a rapid heartbeat, breathlessness, chest pain and tingling in her extremities.
“I need a nap most days,” she said. “I can’t schedule more than one thing per day. If I go grocery shopping, I have energy for nothing else that day. Same goes for doctor appointments… I’m a wreck. I feel like a burden, like I’m failing my kids. Depression and anxiety levels are extremely high.”
And her greatest wish – that doctors would discover a way to treat her symptoms – seems light years away.
While the Center for Disease Control acknowledged Long COVID’s existence in July 2021, there is still no definitive diagnostic test, no clear set of symptoms and no cure beyond establishing “a personal medical management plan that can help improve… symptoms and quality of life” according to the CDC.
It’s a cycle that Aalbue – who has, in the past nine months, seen nutritionists, occupational therapists, speech therapists, physical therapists, dentists, dental surgeons, mental health therapists, and her general practitioner – has found untenable.
“[I]t’s all way too much…” she confirmed. “One doctor’s appointment requires the entire day, plus the day before to rest up for it, and possibly a day after to recover. When I’m having three or more appointments in a week, it is completely wrecking everything else and that doesn’t even take into account… that I’m having to do all of these exercises… throwing my system into absolute distress. I’m not well enough for the cure!
“It’s such a weird place to be, advocating for care, finally getting to a point of having that care, but not having enough left in yourself to actually be able to do the treatments… So, at this point, I’ve taken a step back from many treatments… I’m trying to prioritize.”
Because some of the treatments are working.
“I am seeing a therapist regularly for the first time in my life,” Aalbue said. “I’ve gotten all the tests and stuff to be sure I don’t have any illnesses or major things wrong… I have good reason to take care of myself, take a really good look at my health and improve everything I can.”
And Sarah and her daughter have seen improvements as well.
“A Long COVID doctor tested our ferritin…” she said, referring to the blood protein that stores the body’s iron, which, in both Sarah and her daughter, was extremely low. “As soon as we started taking a gentle iron supplement our symptoms were reduced.”
The two also got tested for Lyme disease, which can present symptoms similar to Long COVID. The tests were positive.
“We began to understand that COVID may have been a hard enough hit to our immune systems that it allowed underlying Lyme to flourish…” Sarah said. Admitting, “Without this Long COVID journey Lyme could still be carving away our health without us understanding what was happening. We are getting treatment and improving, that’s a blessing.”
But it isn’t the end of her story, just as it isn’t the end of the story for anyone suffering from Long COVID – at least not yet.
“There’s a lot we don’t know, but there is a lot we do know about this condition already,” Aalbue said. “I don’t want people scared. I don’t want people freaking out. I want people educated and aware and doing everything that they can to minimize Long COVID in our community. In the long run, it benefits all of us to remain safe. The pandemic isn’t over. And Long COVID is definitely only just begun.”
