Patrick Barkham, a respected British journalist and nature writer, has written a deeply personal and powerful piece in The Guardian about his daughter Milly’s long, painful descent into what turned out to be Lyme disease—and the medical system’s failure to recognize what was happening to her.

Though Barkham lives in the U.K. and his family sought help through his country’s National Health Service, their experience mirrors what my family and so many others in the U.S. have faced: a confusing maze of specialists, inconclusive tests, and a growing sense that conventional medicine doesn’t have the answers.

Milly was once a vibrant, energetic child. But over time, her health deteriorated—fatigue, pain, and neurological symptoms left her unable to attend school.

Doctors labeled her with chronic fatigue syndrome (ME/CFS), offered psychological explanations, and prescribed treatments that didn’t help. As Barkham writes:

“We were told she had chronic fatigue syndrome, and that there was no cure. But what if something else was going on—something treatable?”

Eventually, after a long and arduous search for answers, Milly was diagnosed with Lyme disease—likely from a tick bite her mother recalled from years earlier. But by then, the illness had taken a profound toll.

Her story is not just about Lyme. It’s about how easily patients, especially children, can be misdiagnosed, dismissed, and left to suffer without help.

As someone whose own family had to step outside the medical mainstream to find answers, I found Milly’s ordeal painfully familiar. Whether in the U.K. or the U.S., families like ours often end up seeking help from outliers—practitioners willing to look beyond rigid protocols and truly hear what the patient is going through.

I urge you to read the full article. It’s not just a story about one girl—it’s a reflection of a system that too often fails too many people. And that’s something we must all work to change.

Milly in 2021, on the day in the Lake District when she probably contracted Lyme. Photograph: Patrick Barkham

TOUCHED BY LYME is written by Dorothy Kupcha Leland, President of LymeDisease.org. She is co-author of Finding Resilience: A Teen’s Journey Through Lyme Disease and of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.