Frida Hansson, 41, was diagnosed with amyotrophic lateral sclerosis (ALS) in December 2023 after years of experiencing confusing symptoms.
Around that time, her teenage son moved in with his dad, her ex. It didn't feel like the right time to tell him what was going on with her health, she said. So she didn't.
Years passed. Hansson said she never found the right moment to bring it up. She tried, several times, to come clean over coffee or dinner. "Every time I'm like, nope, couldn't do it," she said.
But when her son, now 17, came to live with her this summer and saw how much had changed with her health and day-to-day needs, she realized she couldn't avoid the conversation any longer.
"I regret that I didn't talk to (him) sooner," Hansson, who lives
in Sweden, told USA TODAY. "I waited too long for that conversation to happen."
The anticipatory grief that comes with a fatal diagnosis is often overwhelming for many adults. For parents, the news might feel too heavy to give to their children, too. But young people are resilient, said Linda Mathew, a licensed clinical social worker who co-led the Talking with Children About Cancer program at Memorial Sloan Kettering Cancer Center. And not telling them big news − no matter how sad or scary − could, in some cases, ultimately break the trust a parent has with their child.
"I think kids are so much more resilient than parents, adults, actually," Mathew said. "Kids need just reassurance that you love them and that you're going to be OK for right now."
Teenagers are different, she said, but younger kids live mostly in the moment. For kids of any age, she said, the key is to keep an open dialogue and make sure they know it's OK to ask questions.
When Hansson's son finally did ask her directly what was happening, she said, "it almost felt like a breakup." She was already "over it," having had years to process everything her diagnosis means.
Her son handled the news well, she said. Reflecting back on it, Hansson said she wishes she included him in the process back when she was going through tests and had more questions herself.
"I believe now, afterwards, that he would have coped," she said. "We would have coped together."
How to talk to your kids about illness, and the merits of transparency
Mathew works mostly with cancer patients. When she talks with patients about how to tell their children about their diagnosis, she said, she always starts by asking them what they understand themselves about their health before thinking of a more digestible way to explain it to their kids.
"For younger kids, it's really giving them short, concrete, specific information and then letting them ask you questions as needed," she said. "Teenagers are going to want to Google."
She recommends setting up a support system beforehand, so children know they can turn to an aunt, uncle, grandparent or other trusted adult if they want to talk it through more. She also recommends having the conversation over a meal so it doesn't feel as scary, and telling children not to turn to AI or Google about the diagnosis on their own, instead giving teens trusted online resources to use.
It's OK for parents to cry during those conversations, she said, and kids should know that it's good to express their own feelings, too.
While every child is different and needs different things in these intense moments, Mathew said she never recommends withholding information.
"We strongly believe, and research shows, that the more you involve children in the dialogue, the better they are to manage their emotions throughout and even after the parent dies," Mathew said.
Dr. Sanjay Juneja, a triple board-certified oncologist with more than 475,000 followers on TikTok, said this issue is becoming more pressing because "unfortunately, our cancer patients have gotten younger and younger." While he doesn't think there's any one right way to talk to kids about cancer or other grim diagnoses, he leans toward the merits of transparency. He's had plenty of cancer patients not tell their children who don't regret it, he said, especially if their disease is treatable.
But when parents are up against incurable illness, Juneja said, the amount they share with their children often has everything to do with maximizing the good days they have left together.
"In general, your child is aware of a little bit more than you may be expecting," Juneja said, adding that rule applies to kids of all ages, even toddlers. If parents withhold information when kids suspect something is wrong, he said, it can fracture their trust.
The more you share and explain, he said, the more you allow your child to process and adapt to this new information. Transparency also protects children from feeling resentment toward other family members who maybe knew the gravity of the situation long before any information was shared with them.
Hansson also has a 6-year-old daughter, who knew about Hansson's ALS diagnosis earlier than her brother. It's been easier to talk about it with her daughter, Hansson said, because "for her, I've always been like this." Her daughter lives with her full time, while her son does not. But Hansson was stressed during the years her son didn't know, hoping her daughter wouldn't accidentally mention it when her brother came to visit.
Leaning on other moms
Hansson is connected with other ALS moms through Her ALS Story, a campaign to spread awareness about how the disease impacts young women. How to tell their kids about their disease is a common topic of conversation.
"I talk with other moms every day," Laura McNew, an ALS mom who lives in Ohio, told USA TODAY via email. "The other moms help me cope by sharing their struggles and joys. Only they can understand me fully."
McNew said she told her 11-year-old son about her diagnosis a year-and-a-half ago.
"We were in the car together after a joint therapy session, and it just spilled out of me," she said. "I told him that my muscles were dying because my motor neurons weren't getting the message from my brain. He asked if there were any medications that could help, and I said not really. I told him scientists are researching all the time, and that it's important to remember that there's always hope. We both cried a lot and hugged. I promised that my love (will) never waver, and that though my body would change, I would never stop being his mama."
"My husband and I decided very early on that we were not sharing the death aspect of ALS with our kids because they were so little," Megan Niemeyer, another mother with ALS who lives in Montana, told USA TODAY via email. She added that she herself had "very little experience" with loss and grief at the time. "I asked people to please share freely what’s happening with me to their own kids, just leave out the 'it’s fatal' part. I’m so grateful we did. If they stumbled upon the fact over the last four years, they haven’t said anything. If they do bring it up, I feel much more ready."
In the meantime, Niemeyer said, she's writing stories and advice for her three daughters to have forever. "I’ve been obsessively putting photo albums together, buying personalized lifetime items like travel bags, makeup bags, compact mirrors, jewelry boxes − pretty much doing everything in my power to help remind them of my love for them when I’m gone," she said.
Telling her son the truth felt like a weight was lifted, ALS mom says
Parents don't need to prepare for or even have these conversations with their children on their own, Mathew said. She suggests leaning on social workers, mental health counselors and school staff for support.
Hansson's health has worsened over the last several years, but more slowly than she expected. For most of this time, her son hasn't asked any questions. But in August 2026, she said, he told her he knew "something is up."
He probably knew something was wrong for much longer than he let on, Hansson said.
When he asked her outright, she answered honestly. He wasn't angry, she said, but asked what he can do to help. She knows he might have more questions later, but in the meantime Hansson said she feels like a large weight has been lifted from her shoulders.
"I can speak more freely," she said. "It was unnecessary and hard for me, not telling him."
Madeline Mitchell's role covering women and the caregiving economy at USA TODAY is supported by a partnership with Pivotal and Journalism Funding Partners. Funders do not provide editorial input.
Reach Madeline at memitchell@usatoday.com and @maddiemitch_ on X.
This article originally appeared on USA TODAY: These parents have a grim diagnosis. When should they tell their kids?
