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Long Covid
I'm the Mom, But No One Listened to Me
Personal Perspective: My kid got sick. I was dismissed. My voice mattered most.
Updated March 3, 2025 Reviewed by Tyler Woods
Key points
- When kids have complex conditions like Long COVID, moms struggle to feel heard.
- A mother's knowledge of her child's health is often overlooked.
- Kids with Long COVID aren't lazy. They're sick.
Last year, a neuroscientist diagnosed my son with Long COVID, and I exhaled. I felt relieved to know the cause of Marty’s crushing fatigue and brain fog. And I figured that when I explained it, other people would get it, too.
A teacher came to the house after Marty missed four months of middle school. I made his condition clear.
“Marty can’t think straight,” I said. "He won't be able to do much."
She must not have heard a word I said because she set up a schedule for a kid who had a broken leg, not an injured brain. When he couldn’t keep up, she scolded me for not raising him right.
“Marty has to learn that persistence is a state of mind,” she said.
But my kid isn’t a quitter.
Before COVID, he went to school, played sports and saw friends. But the virus triggered biological changes in his brain and body.
She dismissed my data and offered her own diagnosis.
“It’s anxiety,” she said.
I pushed back. My confident kid didn’t seem nervous. I sent her peer-reviewed papers with research from experts who understood the science.
“Kids can have mild COVID symptoms, but the virus gets access to the brain and central nervous system and causes fatigue and brain fog,” said Sonia Villapol, an Assistant Professor at Houston Methodist Research Institute, who researches neuroinflammation and long COVID.
“It’s crucial to understand that this is physiological. It’s not psychosomatic.”
I delivered that message. But nothing I said seemed to matter. It wasn’t the first time.
A pattern
As I wrote in this blog, Marty’s behavior changed when he was five. He said he felt tired ALL. THE. TIME. He took other kids’ toys and didn’t give them back. Doctors insisted he had developed a personality problem, not a health condition.
I knew something was wrong with Marty’s system. But doctors didn’t take me seriously. They misdiagnosed Marty with a mood disorder when he had a gut disease: Celiac.
Removing gluten from Marty’s diet brought him back to life, and I discovered that Marty’s inflammatory cells had a bigger impact on his behavior than my parenting.
Two years later, Marty caught COVID. When his post-viral symptoms seemed like personality changes, I thought his doctors would want to know what I’d learned in the last go-round. I arranged a Zoom meeting.
"Something is making Marty overwhelmed with fatigue," I said. "I think it's an inflammatory response in his body."
“How much screen time does he have?” the neuropsychologist asked.
“The same as other 12-year-olds,” I said. “Too much.”
“You need to set rules,” she responded.
"Poor parenting isn’t the problem," I said and tried to refocus the conversation on Marty's immune system.
But the psychiatrist was sure that Marty’s symptoms were all in his head. He suggested CBT therapy for $2800 a month.
“Marty has to function in spite of feeling tired,” he said.
“I’ll let his mitochondria know,” I responded.
I felt like I was on a planet with no volume. It turns out that when women talk about health, often no one listens.
When women aren’t heard
There’s a widely held perception that moms can fix problems that parenting can’t solve. And when they don’t do the impossible, they’re blamed.
Fifty years ago, the common view of autism was that cold and uncaring “refrigerator moms,” caused their kids to develop the condition. And schizophrenia, a genetic brain disease, was blamed on a mother's rejection.
Moms fought back. Science advanced. Conventional wisdom changed (mostly).
Today, invisible illnesses like long COVID and chronic fatigue are the new frontline in an age-old information war. But in this fight, moms are set up to fail.
Women are historically not trusted sources when it comes to health and well-being, explained Bethany Johnson, author of You’re Doing it Wrong! Mother, Media and Medical Expertise. Just ask the women who underwent IVF treatment at Yale Fertility Clinic and screamed in agony but were ignored, after a nurse stole the pain medicine and substituted saline.
According to Ms. Johnson, it’s part of a bigger problem in modern medicine. Doctors routinely misdiagnose or dismiss women’s health issues and moms get written off.
“No one listens [to mothers], even though they have the most information about their child,” Ms. Johnson said.
I was certain that something was wrong with Marty’s immune system, not his mindset. I tracked down a clinical researcher who focused on infections and brain function. She didn't ask about my parenting. Instead, she listened to my description of Marty's health experiences and saw what everyone else had missed.
“I think he has Lyme,” she said. He had two other tick-borne diseases too. The untreated infections had caused an autoimmune reaction in Marty’s brain.
He started antibiotics and saw a change.
“I feel more energy,” Marty said. But he had already missed sixth grade.
The toll it takes
Last summer, we moved to a suburb outside of New York City. I chose a public school that offered support, and I explained Marty’s health history to school administrators.
“I’m not sure how he’ll do,” I said.
But Marty seemed fine. At a school orientation, he said please and thank you. He talked about the computer he built, and how much he loves Nvidia’s 4090 graphics card and his monitor’s refresh rate.
“He’s a self-assured kid,” the counselor said. “He’ll do great.”
But after a month of school, Marty got a fever, and the fatigue returned with a vengeance.
The researcher who diagnosed Marty with Lyme prescribed anti-inflammatory medication. She explained that symptoms can flare up after a virus or infection.
Marty couldn’t make it to class. We spoke with administrators. The psychologist suggested counseling for “school refusal.”
“Don’t let him stay home,” she said.
A teacher added, “Marty can handle more than you think.”
And when Marty needed me most, I doubted myself.
At home, I screamed at my son for his out-of-control immune system.
“Find energy!” I said. “You have to get better!”
“My mind wants to, but my body can’t,” he said. “I’m too tired.”
I slammed doors. I cursed. I cried. I grabbed him by the wrists and pulled him to the front door. Nothing worked. Some days Marty watched Mr. Beast all day. Others, I unplugged the router or locked his keyboard in the trunk of my car.
Mothers know best
There’s great parenting advice about predictable problems. But when it comes to managing a kid with a complicated condition, there’s no guidebook. And society has strong assumptions about mothers whose kids act in misunderstood ways.
“People don’t grasp the complexity [of behavior],” said Dr. Jay Belsky, Professor Emeritus at the University of California, Davis who studies nature, nurture and child development.
“We have a tough time believing that someone will or won’t do something for any reason other than they’ve chosen to,” he said.
I want to believe that free will exists. I love behavior charts, better choices and strivers. But if immune cells in Marty’s body attack his brain, getting to school isn’t an option.
I realized that I needed to stop listening to the noise, so I could hear my own voice.
I fired the psychiatrist and neuropsychologist. I told the school that Marty needed home instruction. And I put my reporting skills to work and researched immune-related treatments.
“What about immunoglobulins?” I said to the clinical researcher. Studies shows that infusions of immune system antibodies can help fight infections and reduce fatigue and brain fog.
Each week, Marty gets two injections of a solution made from pooled human plasma. He can think again. He works with tutors. He has stamina and sees friends.
“Let’s add an hour of schoolwork each day,” he said.
Marty is making progress. But some days are better than others. My gut tells me to move slowly and celebrate small successes. And if Marty’s behavior isn’t what someone else expects or understands, I've decided that’s not my problem.
Epilogue:
The other day Marty told me he felt super tired.
“I can’t learn today,” he said.
I wanted to tell him to put mind over matter. That when there’s a will, there’s a way. Instead, I hugged him.
“You look exhausted,” I said. “Rest today and let’s see how you’re doing tomorrow.”
“Thanks mom,” Marty said. “I really needed that.”
I don’t have all the answers. But I know what matters most is my relationship with Marty. I’m going to trust my instincts and use my voice, regardless of who listens.
