By Jennifer Saterdal

My book is called Bitten. It shares a title with Kris Newby’s landmark investigation into the origins of Lyme disease, a book this community knows well. But where Newby’s work asks hard questions about how we got here, mine asks a different question entirely: what happens to the family inside the crisis?

My story doesn’t center on Lyme disease. It centers on Rocky Mountain spotted fever, the tick-borne illness that nearly killed my brother and me. Different illness. Same fight.

Because the Lyme disease community understands something most people don’t: that tick-borne illness is dismissed, misdiagnosed, and misunderstood at an alarming rate. That patients are told they’re fine when they are not fine. That the tests aren’t reliable enough, the doctors aren’t trained enough, and the window for effective treatment closes faster than anyone tells you. I know this story. It’s just that I know it from a different illness. And I think it’s worth telling.

Given 1-2 days to live

In the summer of 1985, my brother was six and I was nine. He was given two days to live. I was given one. We were in a Florida hospital, and the doctors had run out of answers. There were no visible tick bites. The tests were inconclusive. We were getting worse.

It was my grandmother who saved us. She was sitting at home reading a magazine when something she saw matched what she was watching happen to her grandchildren.

She brought that article to the hospital, convinced the doctor to take her seriously, and within hours we finally had a diagnosis: Rocky Mountain spotted fever. We were on the edge of the window where treatment still works. She got there in time.

RMSF is caused by Rickettsia rickettsii, transmitted primarily by the American dog tick, the Rocky Mountain wood tick, and the brown dog tick. It attacks the walls of blood vessels throughout the body.

Without treatment, death can occur within eight days of symptom onset. The rash that gives it its name — the spotted fever — is absent in up to 60 percent of cases in the early stages, which means doctors looking for it will often miss it entirely. My brother and I had spots. We were lucky in that particular way, even as we were running out of time in every other.

The family member who pays attention

What I didn’t know then, and what I have spent decades learning since, is how much RMSF and Lyme disease have in common — not biologically, but experientially. Both are tick-borne. Both are frequently missed. Both are dismissed by doctors who haven’t seen them before or who are looking for a simpler explanation. Both can be devastating when treatment is delayed.

And in both cases, the person who often catches what the medical system missed is not a specialist or a researcher. It’s a family member who is paying attention and refusing to let it go. My grandmother was that person for us. I have tried to be that person for my own family ever since.

Years later, when my husband’s testosterone came back at a level of 3 — normal is 300 to 600 — I was the one who kept pushing. We eventually found a pituitary tumor the size of a grape wrapped around his internal carotid artery. He had brain surgery. He is alive. Not because a doctor caught it early. Because someone kept asking questions until the answers made sense.

The growing tick crisis

That is what I wrote about in Bitten. Not just my survival story, and not just the facts about RMSF. I wrote about all of it — the full picture of what tick-borne illness looks like from the inside of a family that has lived it.

The book covers RMSF, Lyme disease, alpha-gal syndrome, anaplasmosis, Powassan virus, ehrlichiosis, babesiosis, and the Congressional investigation currently underway into whether the United States government conducted tick research that may have contributed to the spread of tick-borne illness in America.

I cover the Lyme disease chapter with particular care because I know this community has been fighting for decades to be believed. The bull’s-eye rash that appears in fewer than half of cases. The two-tier testing that misses a significant percentage of early infections. The “post-treatment Lyme disease syndrome” that affects an estimated two million Americans and is still dismissed by too many physicians as something other than real.

I am not a doctor and I don’t pretend to be. But I am someone who knows what it costs to be in a hospital with a loved one when the system has run out of answers. And I wrote this book for every family that knows that feeling.

What my grandmother did that summer in Florida was not remarkable by any medical standard. She read a magazine and she paid attention. She walked into a room where she had no credentials and she said: I think I know what this is.

She was the crazy lady in the room that day.

She saved our lives.

That is what this book is about. Not the ticks. The people who refuse to brush it off.

Jennifer Saterdal is a writer and tick illness survivor based in Puyallup, Washington. Her book Bitten: A Tick Survivor’s Warning About the Growing Tick Crisis releases July 13. More at jennifersaterdal.com.