Frida Hansson, 41, received a diagnosis of amyotrophic lateral sclerosis (ALS) in December 2023 after living with puzzling symptoms for years.
At that time, her teenage son had just moved in with his father, her ex-husband. Hansson felt it wasn’t the right moment to discuss her health challenges, so she kept silent.
Time passed, and Hansson admitted she never found the right opportunity to bring it up. Despite several attempts to open up over coffee or dinner, she always hesitated, saying, “Every time I’m like, nope, couldn’t do it.”
This summer, however, when her son, now 17, came back to live with her and noticed the significant changes in her health and daily life, she recognized that the conversation could no longer be avoided.
“I regret that I didn’t talk to him sooner,” Hansson shared from her home in Sweden. “I waited too long for that conversation to happen.”
The burden of anticipatory grief can be heavy, especially for parents with serious diagnoses. It often feels daunting to share such news with children. Yet, young individuals can be surprisingly resilient, as noted by Linda Mathew, a licensed clinical social worker who co-led the Talking with Children About Cancer program at Memorial Sloan Kettering Cancer Center. Not disclosing critical information—however sad or frightening—could potentially damage the trust between a parent and child.
“I think kids are so much more resilient than parents, adults, actually,” Mathew emphasized. “Kids just need reassurance that you love them and that you’re going to be OK for now.”
While teenagers process things differently, younger kids often remain in the moment. Mathew highlighted the importance of maintaining an open dialogue, encouraging children to ask questions.
When Hansson’s son eventually asked her what was happening, she recalled that it felt “almost like a breakup.” By then, she had already processed her diagnosis over the years.
Her son took the news surprisingly well. Looking back, she expressed a wish that she had included him during her initial testing period when she had so many questions herself.
“I believe now, afterwards, that he would have coped,” she reflected. “We would have coped together.”
How to talk to your kids about illness, and the merits of transparency
Mathew primarily works with cancer patients. When advising them on how to discuss their diagnosis with children, she usually begins by asking what the parents themselves understand about their condition. This helps in shaping a comprehensible explanation for their kids.
“For younger children, it’s essential to provide short, concrete, specific information and then allow them to ask questions as they need,” she advised. “Teenagers are going to want to Google.”
She suggests establishing a support system so children have someone else to turn to, such as a relative or trusted adult. Having difficult discussions over meals can ease the tension, and parents should guide their teens towards reliable online resources instead of letting them search on their own.
It’s also perfectly acceptable for parents to express emotions during these conversations, and children should understand that sharing feelings is healthy.
Every child has unique needs, especially in challenging moments, but Mathew firmly believes that withholding information isn’t advisable.
“Research supports that involving children in these discussions helps them manage their emotions better, both during and even after a parent’s death,” Mathew asserted.
Dr. Sanjay Juneja, an oncologist with significant social media presence, points out that this issue is increasingly pertinent as “unfortunately, our cancer patients have gotten younger.” While there isn’t a definitive approach for discussing serious health matters with children, he leans towards the importance of transparency. He has known patients who didn’t share their illness with their children—often because their conditions were treatable—who later wished they had.
Conversely, in the face of an incurable illness, the amount of information shared with children often depends on making the most of the time left together.
“Typically, your child picks up on more than you might assume,” Juneja said, noting this applies across all ages, even young children. When parents hold back information, especially if kids sense something is wrong, it can compromise their sense of security.
Sharing and explaining things allows children to process and adapt to difficult realities. Transparency also helps prevent resentment they might feel towards other family members who might have been privy to the situation long before them.
Hansson has a 6-year-old daughter who learned about her ALS diagnosis before her son. She found it easier to discuss her condition with her daughter, saying, “For her, I’ve always been like this.” Her daughter lives with her full time, unlike her son. However, during the years her son was unaware, Hansson worried about whether her daughter might reveal the information during his visits.
Leaning on other moms
Hansson has connected with other ALS moms through Her ALS Story, which aims to raise awareness about how the illness affects young women. How to discuss their diagnosis with kids is frequently addressed in these conversations.
“I talk with other moms every day,” shared Laura McNew from Ohio. “They help me cope by sharing their challenges and triumphs. Only they can truly understand my experience.”
McNew explained that she told her 11-year-old son about her diagnosis a year and a half ago.
“We were in the car after a shared therapy session, and it just came out,” she recalled. “I explained that my muscles were deteriorating because my motor neurons weren’t receiving signals from my brain. He asked if there were medications to help, and I had to say not really. But I reassured him that scientists are always looking for solutions, emphasizing that hope is important. We both cried and embraced. I promised him that my love would never waver, even if my body changed; I would always be his mama.”
“My husband and I decided early on not to discuss the fatal nature of ALS with our kids since they were so young,” said Megan Niemeyer from Montana. “At the time, I had little experience with grief. I encouraged others to share about my condition with their kids, but without mentioning that it’s fatal. I’m grateful we made that choice. If the kids found out, they haven’t brought it up. If they do, I feel prepared now.”
Meanwhile, Niemeyer has been creating stories and advice for her three daughters, wanting to leave them a personal touch. “I’ve been putting together photo albums, and buying personalized keepsakes—like travel bags and jewelry boxes—so they have tangible reminders of my love when I’m gone,” she explained.
Telling her son the truth felt like a weight was lifted, ALS mom says
Parents don’t need to navigate these conversations alone, according to Mathew. She suggests seeking support from social workers, mental health professionals, and school staff.
Over the years, Hansson’s health has deteriorated, but not as quickly as she expected. Most of the time, her son didn’t ask questions. Yet, in August 2026, he mentioned that he sensed “something is up.”
He likely sensed an issue for longer than he expressed, Hansson thought.
When he directly approached her, she responded truthfully. There was no anger from him; instead, he inquired how he could assist. While he may have more questions later, Hansson feels a weight has been lifted off her shoulders.
“I can speak more freely,” she remarked. “Not telling him was both unnecessary and tough.”
