Hoboken Mom Urges: Please Listen To COVID-19 'Long-Haulers'

HOBOKEN, NJ — Between the good news about coronavirus vaccines and the tragic stories of the more than 525,000 Americans who've died of the virus, there are the stories — underreported, many say —of people who survived the illness but still struggle each day with its long-term effects.

A Hoboken, New Jersey, mom of two, who was otherwise healthy until she got the virus in early April, has written two essays (linked below) to help other sufferers understand the symptoms. And she says not enough people are taking the illness seriously.

Mindi N., who has two children under 10, says she's in two Facebook groups just for parents whose children are long-term sufferers from the disease (hers recovered months ago), and has been in other "long-hauler" groups. She says there isn't enough awareness of those trying to fight their way through an unprecedented battle.

Last spring, a preschool teacher in Oregon gave a name to those who have suffered with symptoms for months: "long-haulers." The teacher owns a truck and took the name from the term "long haul trucking."

Now there are dozens of Facebook groups with names like Covid 19 Survivor Corps, which has 158,000 members, and Covid long-Haulers Discussion Group with 19,000.

In the groups, people ask questions such as, "I need some headache relief ideas. My husband has them so bad he doesn't eat much," and "Trying to find ANY helpful info on getting my smell and taste back."

Some members, while battling "brain fog" and breathing issues, have had to also grieve their spouse or sibling who passed away from the illness.

Two weeks ago, a member posted a poll, saying, "I am hearing rumors of people feeling BETTER after their vaccine. Let's see if this is true." Two hundred and nine said their symptoms seemed the same, 126 said "my long-term covid 19 symptoms have improved slightly," others have not been vaccinated yet, and some had variations of the first two responses.

'Not a fan of going to Facebook'

Mindi N., who is in her 40s, said she's "not a fan of going to Facebook with your medical issues." But when she finally began posting about her situation on social media and then joined support groups, "It was incredible to see someone ask a question about an unwavering symptom and see the responses light up on their post from people who were going through the same thing."

She said, "When I posted my essay, a few friends asked if they could share it. ...Some have noted that they have used my article as a blueprint through their covid experience." She also talked to a producer for a "60 Minutes" story on long-haulers.

Experts are not sure just how many people are suffering from what's been called "long covid," and some have had symptoms since spring but could not get a test or stayed home at first.

"Currently, the condition they are suffering from is known as long COVID, although other names are being proposed," wrote Harvard Health Letter editor Dr. Anthony Komaroff in a story updated March 1 called "The Tragedy of Long Covid." Komaroff wrote, "Published studies (see here and here) and surveys conducted by patient groups indicate that 50 percent to 80 percent of patients continue to have bothersome symptoms three months after the onset of COVID-19 — even after tests no longer detect virus in their body."

He added, "In the US and around the world, planning is underway to develop centers dedicated to research into long COVID and caring for those who have it."

Among them, Mount Sinai in New York has started a Center for Post-COVID Care.

Those who believe it's a hoax

Sufferers say it hurts even more when people act as if the virus is a hoax or is not serious, all while they're struggling or grieving lost loved ones.

In fact, there are people who post laughing emojis on news stories of doctors and nurses fighting the virus, and even recently on a news story about children in Michigan who are long-haulers (here).

Mindi said she understands why people downplay an illness that has hurt so many: fear.

"When I first joined the Survivor Corp Facebook Group in April 2020," she said, "it was so frightening to see people not getting better that I left the group (only to rejoin again in May after my hospital stay)."

But, she added, "After I got out of the hospital and was on the other side, [a local mom] and a few other friends encouraged me to share my story. It was early days back then and no one really believed that this virus was as rampant, dangerous and undiscerning as it was (and not just for the seniors and the compromised). There were and are still so many people in Hoboken still walking around maskless." (Read more: Covid 'Continuing To Increase')

She said, "I also knew I had to give back to the community of Hoboken Mommies — who in this instance quite literally saved my life. Without [a borrowed] oximeter, I would have never got to the hospital at the critical right time — I would have never realized that my oxygen dipped under 90 and would have just assumed that I had flu-like light-headedness symptoms."

Mindi said that there is a simple thing people can do to help those who are suffering:

"My recommendation to everyone," she said, "vaccinated or not, is to please lean in when you hear stories and articles about the long-haulers — because they have fought hard to be heard and their experiences are a valuable lesson to all. They are real stories not just a tally on a screen."

To read Mindi's essays on Medium about her family's battle, they are:

• June 1: My Family's Covid Experience
• Jan. 1, 2021: A Survivor's Guide To Surviving Covid

Related stories:

• NJ Mayor: 'When people would dismiss the seriousness of this ... if they had any idea their neighbor was on a respirator, they might feel differently.'
• Massachusetts Survivor: What Life Is Like As A 'Long Hauler'

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