I first became aware of Olivia Goodreau about six years ago.

I was at my computer, watching the livestream of the first meeting of the federal Tick-Borne Disease Working Group, which convened in Washington DC in December 2017.

At one point, during the meeting’s public comments, a young blonde girl stepped up to the microphone and confidently said, “My name is Olivia Goodreau, and I am 13 years old…I have had Lyme disease for half of my life, and I do not remember what it feels like not to be sick.”

This poised and well-spoken teenager certainly got my attention. I imagine everybody else watching that day took notice as well.

That was just the beginning of Olivia’s public activism on behalf of Lyme patients. She and her family started an organization called the LivLyme Foundation. It has raised money to help pay for Lyme treatment for children, sponsored conferences, and given research grants to scientists.

Through it all, Olivia has functioned as the public face of the foundation. She speaks to the media, helps plan LivLyme events, and sometimes meets with legislators and prominent researchers—heady stuff for a teenager.

She has also worked with a team of design and development experts to create an app called the TickTracker. It allows people to use their cell phones to report and track the location of ticks.

And now she has written a book.

Mysterious symptoms

In her memoir But She Looks Fine: From Illness to Activism, Olivia tells her story from when she first starts experiencing mysterious health symptoms at age 7.

In second grade, weird things start happening. Her vision goes in and out, and sometimes she finds it hard to move her body. “My back turned into a wooden board,” she writes. “My feet became cement blocks.”

A bizarre episode during a school choir performance brings Olivia to the brink of collapse. She lands in the hospital and endures days of tests, including x-rays, EKGs, and an MRI. None of it reveals anything amiss. One doctor tells her she just needs to drink more water. The family chooses to keep looking for answers.

After she’s been seen by more than 50 doctors, someone thinks to test Olivia for Lyme disease. When her Western blot comes back positive, they give her the CDC-recommended protocol of 30 days of antibiotics. Initially, she feels better with the drugs. But a few days after finishing the pills, her symptoms return with a vengeance.

Eventually, Olivia is seen by renowned Lyme expert Dr. Richard Horowitz. He diagnoses her with chronic Lyme, Postural Orthostatic Tachycardia Syndrome (POTS), various co-infections and a rare blood disorder. Slowly and surely, Olivia writes, his treatments help her feel better. But it doesn’t happen all at once.

Yearning for “normal”

About this time, the LivLyme Foundation is kicking into high gear and Olivia becomes heavily involved in the world of Lyme activism. She clearly takes great satisfaction from this, but she also longs for normal teenage experiences like friends, parties, and school activities.

Regrettably, some unfortunate instances of bullying mar her middle school years. (I’m aware of other young people with Lyme disease who also have been harassed at school. Not only do these kids have to deal with their miserable symptoms, but they must also put up with bad behavior from classmates. It’s the pits.)

A particularly compelling aspect of the book is the advice Olivia gives in the form of six letters. “Dear Parents,” “Dear Doctors,” “Dear Classmates,” “Dear Politicians,” “Dear Scientists and Researchers,” and “Dear Significant Other” speak to what ailing young people need from others in their lives.

Though not mentioned in the book, social media posts tell us Olivia will attend UCLA in the fall. (My alma mater!)

I suspect she will continue as a force to be reckoned with in the world of Lyme advocacy—or anything else she undertakes.

If you want an inspiring read, pick up a copy of But She Looks Fine: From Illness to Activism.

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