What Is Medical Gaslighting? And What Should You Do if Doctors Ignore Your Symptoms? Watch Maria’s TODAY Show Report—and Read This Sunday Paper Original—for the Answers

Meghan O’Rourke was in her 20s when she started to feel unwell, and she spent most of the following decade dealing with a cascade of autoimmune issues. In an effort to understand how she lost so many years of her young life to pain and fatigue, she wrote an investigative piece for The New Yorker. Yet unlike most stories the journalist works on, that piece didn’t feel finished after it was published.

“I wrote that article out of a sense of mission,” O’Rourke told The Sunday Paper. I had been mysteriously sick since my 20s, but there was no clear-cut test saying this-is-what’s-wrong-with-you. At times, I didn’t even believe I was sick.”

What didn’t help were the number of healthcare practitioners O’Rourke saw who didn’t believe she was sick, either. “I heard everything from, ‘You’re just tired’ to ‘Well, I think it’s just because you have your period,’” O’Rourke told Maria Shriver on TODAY. “I felt so alone when I was sick, and I distrusted myself.”

For so many women, going to the doctor and being told your concerns aren’t serious—or that they’re simply the result of being tired or stressed—can be maddening. Sometimes called medical gaslighting, this common behavior leaves patients feeling dismissed and worse, it can lead to very real and even dangerous symptoms being ignored. This is one of the reasons O’Rourke wrote The Invisible Kingdom: Re-Imagining Chronic Illness.

“We need more visible narratives of people whose personal story resists the tidy recovery,” she says. “With chronic illness, it’s a harder story to tell—but an important story for so many.”

Watch Maria Shriver’s special report for TODAY on medical gaslighting and what to do about it below—and keep reading for our conversation with O’Rourke about her journey to health, and what she wants everyone to know about getting the care they deserve.

What was the experience like writing about your very personal health journey for The New Yorker—and what was the response?

I wrote that article out of a sense of mission. I had been mysteriously sick since my 20s. When I wrote that article, I was in my 30s. No tests could tell what was wrong with me, doctors didn’t know. I was dealing with symptoms like brain fog and fatigue, drenching night sweats and hives. But there was no clear-cut test saying This is what’s wrong with you. At times, I didn’t even believe I was sick.

I got a diagnosis of an autoimmune disease, and I became interested in why—in our hyper diagnostic age and despite being quite sick—I could not get a diagnosis. What I found is that autoimmune diseases really challenge the Western medical system. We lack good tests for them, symptoms come and go and are exacerbated by stress, and they often happen to young women. It was out of a sense of mission to tell that story that I wrote the piece for The New Yorker. And I very quickly realized that it wasn’t just me who had this frustrating experience getting a diagnosis. Tens of millions of women have similar experiences.

You interviewed a lot of other women for your new book, The Invisible Kingdom. What was that like for you—and what did you hear from them?

It was therapeutic. During the 15 years before my diagnosis, I thought something was wrong with me. Maybe I was too sensitive, shouldn’t eat sugar, maybe I was to blame for what was happening to me. When I reported the piece, I heard so much of the same—a lot of, Am I at war with myself? I felt alone. When nobody recognizes your illness, you’re made invisible. And in that moment, it’s your sense of reality that distorts even though it’s other people’s reality that’s distorted!

Talking to others was so important. It helped me see I was such a small part of a larger story, and there was a real problem we needed to correct and a real crisis of invisible illness. Talking to other patients was the first step to feeling less invisible.

Were you especially surprised by anything throughout the course of your reporting?

I was surprised to hear what a huge role the microbiome played in the growing rates of autoimmune disease. When I first started reporting, nobody talked about the microbiome. But it became clear that problems in our microbiome are playing a role in the rise of autoimmune conditions. As I researched this, I ended up trying some of the tactics shown to promote a healthy microbiome, and it made a huge impact on my health.

The other thing that was really surprising was realizing how naïve I was at the beginning of my journey. I had these specialists at different hospitals who don’t communicate with each other. I realized you can get more integrated care, including integrative medicine and practitioners who use different modalities. I’ve found a couple integrative doctors who helped me manage my condition.

When I got sick, I had the American narrative in my head: Just do it. What doesn’t kill you makes you stronger. I thought I had to put all my effort into getting better. Thankfully at some point, I realized I had to make a shift from focusing on the idea of recovery to living the best version of my life with chronic illness.

We need more visible narratives of people whose personal story resists the tidy recovery. With chronic illness, it’s a harder story to tell—but an important story for so many.

Is this why you wrote the book? To make these “invisible illnesses” more visible for the rest of us—including healthcare practitioners?

Usually I finish an article and I’m done. But in this case, I knew there was more to say. I got hundreds of emails with stories saying something along the lines of, You’re telling my story! It made me feel that I had a voice I could use to bring attention to this problem that impacts so many Americans.

I got obsessed. I wanted to understand how medicine got to this point. I was interested in what felt quite mysterious: Why when you’re a patient and you walk into a doctor’s office, why is it often so hard for him or her to believe you? All too often, that experience is like walking into a restaurant and the server asks you what you want yet when you respond, he or she says, “I don’t actually think you’re hungry.”

There are a whole host of structural reasons for why this is. But I wanted doctors to understand the context of this problem! For people with mysterious immune diseases it’s hard to measure those diseases, and symptoms come and go. Those symptoms can look psychological, so we are doubted and disbelieved rather than doctors saying, “Wow, this is a mystery and I want to help you.”

So, in the book I provide a history of how we ended up here, and how can we make change happen.

What’s your best advice for others in your same boat—those who might be reading this and saying, “Yes! This is happening to me!”?

First of all, trust yourself. Imagine a friend of yours is going through what you’re dealing with. What advice would you give that friend? Then, give that same advice to yourself. Taking care of your health and advocating for yourself is your job, and you have every right to be relentlessly assertive about your need for care.

Also, if you have doctors who aren’t true partners in your care, move on. This doesn’t mean doctors will have all the answers, but they should be curious and open to dialogue. Those doctors are out there, it can just take time to find them. So be patient, but persevere.

Finally, find the friend or trusted person in your life who can really listen to what’s going on and tell them what you need. There’s a lot of shame around illness, especially if you don’t know what it is. Trust that your friends want to help. You need that support—and it’s OK to reach out for help.