Long-COVID Wish: ‘We Want to Go Back to Normal Life’

After living with multiple effects of long COVID since March 2020, Kelly Keeney of Beachwood, NJ, has this message for the world: It’s real. And it’s really awful.

A career mortgage processor who had been hoping to turn her passion for dog-training into a full-time business, Kelly’s job instead is managing seizures, short-term memory loss, extreme fatigue, bone pain, balance issues, blurred vision and an irregular heartbeat. Working with doctors, including a team at the National Institutes of Health learning from her experience, Kelly’s health has improved, but only slightly.

And while she finds validation in research such as a September 2021 study published by the U.S. Centers for Disease Control and Prevention showing that one in three people who survive COVID-19 suffer from long COVID, all Kelly wants is to feel better.

In the meantime, she pretends. “People with chronic illness aren’t faking being sick; they’re actually faking being well,” Kelly said. “We want to go back to normal life, and a lot of times we’re tired of talking about the fact that we’re sick. So we just say, ‘Yeah, we’re fine. We’re OK.'”

Kelly deeply misses feeling OK. She still can’t reconcile how a “mild, stay-at-home case of COVID” turned her from a person juggling two jobs and a busy social life—oh, to be back playing pub bingo and drinking wine with friends—into someone who seldom ventures far from home.

“I burned three candles at both ends for a long time,” Kelly said. “And now I just wish I could do something like go on a little, three-day vacation and not have to use a cane or a walker.”

Vaccines were not yet available when Kelly’s COVID symptoms emerged in March 2020. Although she didn’t feel great—a slight fever and a bit of a dry cough—she was able to continue working from home. But six weeks later, when it seemed like things should be on the upswing, Kelly lost focus.

“I started having difficulty typing the right words, and I was misspelling things,” she said. “The more time I spent on the computer, the less I could function.” Symptoms multiplied, with Kelly experiencing intermittent headaches, fatigue and neck pain so severe she couldn’t comfortably sit up.

This was early in the pandemic, when long COVID was less-defined. Kelly said, “To be honest with you, I thought maybe I was crazy.” But in an online support group she found through a “60 Minutes” report on the after-effects of COVID, Kelly found solace—and company in numbers.

When Kelly joined the Long COVID Support Group, a private Facebook group, in July 2020, it had about 1,400 members. Today she is among the moderators of a group that has grown to 45,000 people across the world living with long COVID. She also is a member of COVID Survivors for Change, which advocates for legislative change at the state and federal levels.

“The support groups are pro-science and anti-miracle,” Kelly said. “But mostly, we just want people with long COVID to know they’re not alone.”

To that end, Kelly has also helped the CaringBridge team create a Long COVID Support Center. A resource inspired by those who have used CaringBridge through COVID—including Kelly—it confirms the healing power of community. “People with long COVID can feel really sick, even when others can’t see it,” Kelly said. “To hear, ‘Wow!’ and to have your symptoms acknowledged … there’s healing in that.”

Although Kelly’s symptoms linger, she also has found healing in the companionship of Jampa, her Greater Swiss Mountain Dog. The breed is known for loyalty and protection, and with long COVID requiring Kelly to be more patient with herself, Jampa has been patient, too. “Dogs just know when their people need them,” Kelly said. “I don’t know how I could manage without my boy.”

It is Jampa, and Kelly’s passion for dog-training, that keep her working toward restoration of health. While so much about long COVID remains unknown, including whether some or all of her symptoms will ever fully resolve, Kelly imagines feeling like herself again.

And what will she do if her path toward healing also includes a cure? Kelly said: “I’m going to train dogs. I’m going to have a canine day camp here at my house so people can drop off their dogs, go off to work and pick them up at the end of the day. I hope that’s what I’ll be doing. Fingers crossed.”