The first time my friend Leucas came to visit, it was a cold, dark January in Canada, but we made the best of it. Leucas got the hang of layering pants to stay warm, taught my eight-year-old daughter, Rose, how to ice skate, and we enjoyed butter tarts by the water.

Nine months later, Leucas returned—but this visit felt completely different. They flew from L.A. to Toronto with only a few hours’ notice, and during our long days together, we barely talked. Instead, Leucas spent the whole time looking after my one-year-old, Calvin, while I handled Rose’s medical care.

It had all started a few days earlier with seizure-like movements—and then everything changed. Rose’s eyes, usually so bright, couldn’t focus on us. They were wide and unfocused. Over the next few hours, she lost the ability to use the bathroom, speak, walk, sleep, or eat. My husband David eventually moved with her to the basement, where she cried for hours on end as new, painful neurological symptoms took over.

We later found out that a mild virus our family had caught weeks earlier had caused swelling in a part of Rose’s brain called the basal ganglia. After a week without sleep and three trips to the emergency room, she was diagnosed with PANS, a condition where the immune system attacks the part of the brain that controls impulses, movement, and emotions. But when I called Leucas and asked for help, we didn’t have a diagnosis yet. All we knew was that Rose’s life was in danger, and we had to keep her safe while also caring for Calvin. Leucas arrived that same evening.

Getting Rose the care she needs has been exhausting—that’s usually the main point of any story I tell about the past year. But there’s also another side to this, and that’s what this long crisis has done to my friendships.

I’ve always been someone who thrives on friends. In elementary school, I had a sleepover every Friday, two playdates on Saturday, and something else on Sunday. In high school, I’d spend evenings lounging on my beanbag, feet up on my yellow daybed, chatting away on my cordless phone.

I’ve tried to explain how intense these bonds are to my husband, a quiet book lover who’s kept the same small circle of friends for over 30 years—the nicknames, late-night secrets, boardwalk meetups, shared clothes, and carefully folded notes. When I studied abroad at St. Andrews, I covered a whole wall with posters full of inside jokes shared with my flatmates from England, France, Alaska, and D.C. On Thursdays we went dancing, and on Fridays we piled into bed, watching Robert Redford movies on someone’s laptop while splitting packs of Tesco cookies.

I love meeting new people, and I love the comfort of friends who’ve known me for decades. I love that giddy feeling of laughing over wine in the evening. I love hearing the details of my friends’ lives. So why has it been so hard to share the details of my own lately?

Rose has now been seriously ill for a year. She doesn’t go to school anymore, barely leaves the house, and hasn’t seen a friend since September 2025. For the first three months, she couldn’t even stand the feel of our hands on her back. She’s slowly getting better—learning to dress herself again, relearning to read—but it’s a slow process. My husband is on government leave to care for a critically ill child. One morning this spring, I realized I hadn’t left my neighborhood in six months. How can I explain how completely our lives have changed?

On one hand, friends have been a lifeline during this time. Leucas flew in to help. My sister came next. My friend Jane has sent us more meals through DoorDash than I can count. My writing group brought food. Others sent money for more meals. I’ve been incredibly lucky to have loyal support from both newer and lifelong friends—people who keep checking in, no matter how grim my updates are. But even those relationships have had their struggles.Things have shifted between us as we’ve become less certain of what to say to each other. It feels like we’re yelling across the gap left by my family’s losses, and the struggles in their own lives get swallowed up in all that darkness.

Then there are the people who pulled away. New friends who didn’t want to deal with the drama. Older friends who stopped reaching out after a few weeks. A handful who keep asking about everything except Rose. In my isolation, I’ve sometimes wondered if it matters that some of her symptoms are mental health-related, that her illness often leads to suicide in kids. Does this kind of bad luck seem catching, like it might somehow spread to people who used to see their own family lives reflected in mine?

This isn’t a criticism of how others have let me down—I’ve let my friends down in countless ways this past year. Before this crisis, I thought about them often, keeping up with their jobs, relationships, and parents’ health. Now, I barely think about anyone outside my own family. I forget birthdays. I lose track of their trips, illnesses, or arguments with their moms. I know plenty of people are dealing with their own pain and loss, pushing through hard days, but I’m so worn out that there’s nothing left for anyone beyond my front door.

That said, I’ve built intense new connections with other parents of kids with PANS, the doctors who treat them, and the advocates fighting for them. PANS is brutal on its own, but there’s a web of unfairness that makes it worse: people wait years for a correct diagnosis, insurance refuses to cover the best treatments, and the tens of thousands of affected kids have only a handful of doctors available.

The slow gap between research and real-world care is hurting children, and once you’ve seen it, you can’t ignore it. When I’m not worrying about keeping my kids alive, I’m writing, working on a podcast, talking to advocacy groups, or reading medical studies. It’s a relief to meet someone else who’s witnessed this nightmare. What a gift to share the details without having to explain how awful it all is.

And then there’s a feeling anyone in a crisis will recognize. Before, our family moved in step with other young families—new boots in winter, scrambling for summer camp spots in April, a pillowcase of Halloween candy, and checking for ticks. Now the year has no shape. There’s no real difference between summer and fall, or a random Thursday and Thanksgiving.

While the days blur together, I’ve become rigid in a new way. I know not everyone can care about fighting PANS as much as I do, but I still wish they would. I’ve got the passion of a recent convert: join me in this work, or I’ll move on.

Almost everything about me has changed this year—how I see the world, how I see myself, and, for the first time in 43 years, how I approach friendship. I hope there’s a day soon when I’m laughing with friends over a bottle of Sancerre and a half-eaten plate of radishes and lemon bars. Partly because I miss it, but also because it would mean my daughter is finally doing okay.

Frequently Asked Questions
Here is a list of FAQs based on the theme When your child is in trouble you quickly see who truly shows upand who disappears

General Understanding the Concept

1 What does this saying actually mean
It means that during a crisis involving your child peoples true colors are revealed Fairweather friends and even some family members will fade into the background because they dont want the drama or the burden The people who truly love you and your child will step up without being asked

2 Is it normal to feel angry at the people who disappear
Absolutely It is a profound betrayal to feel abandoned when you are most vulnerable Allow yourself to feel the anger but try not to let it consume you Your energy is better spent on your child and the people who are helping

3 Does this mean I should cut off the friends who didnt show up
Not necessarily immediately Some people genuinely dont know how to help or are paralyzed by their own anxiety However you should definitely adjust your expectations You might downgrade them from inner circle to casual acquaintance If they show a pattern of abandonment its healthy to distance yourself

4 Why do people disappear during hard times
There are several reasons fear of saying the wrong thing their own inability to handle heavy emotions a belief that they might catch the bad luck or simply selfishness Sometimes its because they dont want to be asked for money or major favors

Dealing with the Disappearers

5 People keep saying Let me know if you need anything but then they vanish Why
That phrase is often a polite script not a real offer It puts the burden on you to ask which feels awkward and exhausting When people truly want to help they say Im bringing dinner on Tuesday or Im taking your other kids to the park at 3 PM

6 What should I do when a close relativefriend ghosts me during my childs crisis
First give them one chance to explain A simple text like Ive noticed we havent heard from you we miss you