Parents worry.

When our children are first born, we worry they aren’t eating or sleeping enough. We worry we might accidentally roll over and squish them when we nap together. We worry they aren’t talking or potty trained soon enough.

When they’re older, we worry they’re watching too much TV. We worry they’re getting bullied at school. We worry they’re going to come home with lice.

One study found parents worry an average of 37 hours a week. All this worrying can feel like a full-time job!

Parents with a chronic condition worry about these things and a lot more.

We worry about how to explain our frequent flares and hospitalizations to our children without frightening them. We worry about missing their ballet recitals, school plays, and karate meets. We worry about canceled trips, family get-togethers, and playdates. We cycle between feeling anxious and afraid about our condition and guilty we might be too sick to meet our children’s needs. 

This kind of worrying can be deeply isolating.

Yet it shouldn’t be given that 6 in 10 Americans have a chronic condition. Among the most common are heart disease and cancer; autoimmune diseases like lupus, multiple sclerosis, and severe asthma; infectious diseases like long COVID and Lyme; and genetic diseases like cystic fibrosis, Parkinson’s, and type 1 diabetes. 

These conditions keep us from being able to do a lot of everyday activities. They require day-to-day care, medication, and support. Yet we rarely get this from our doctors or nurses who are overwhelmed by staffing shortages and a system that is geared toward caring for acute illnesses, not chronic ones.

And we almost never get support when it comes to how to parent with a chronic condition.  

Before my son turned three, I had already been hospitalized five times. One morning while I was weeding our garden, I started wondering how I was going to explain my stays in the hospital to him when he got older. 

I went online to find a book about parenting with a chronic illness that had guides for those kinds of conversations and I was startled when I couldn’t find it.

How can more than a billion people on earth have a chronic condition–hundreds of millions of whom are parents–yet so few resources exist? 

So, I decided to write the book I wanted to read.

It is called The Art of Parenting While Sick because there is indeed an art to it. We need to think more creatively about parenting than able-bodied parents do.

The book covers a wide range of topics including how to:

• meet your child’s essential needs (that only a parent can) regardless or your ability or mobility level
• identify your child’s day-to-day physical or social needs you can’t meet (for example, if you’re too tired to go to the playground when you’re in a flare) and how to create and tap into a support network to make sure those needs still get met
• create guidelines to reduce family conflict and create a more harmonious, cooperative household
• talk to your children, family, and friends about your condition, limitations, and hospitalizations
• cope with the six major emotions that come along with living and parenting with a chronic illness–grief, anger, guilt, shame, anxiety, and fear
• brainstorm and implement your own guardrails for participating in online support groups
• handle the trauma that comes along with ongoing symptoms, struggling to find the right medical care, and hospitalizations

Each chapter includes a story about a parent with a chronic condition. Hearing directly from parents has been the most meaningful part of my research.

If you are a parent with a chronic condition and you are interested in being interviewed as part of my research, please contact me here.

You can also fill out this short survey. It should only take around 5 minutes.