One of the many indignities of being a patient is that you won’t always be taken seriously. Perhaps the most frustrating—and startlingly common—experience is being told your medical symptoms, which have nothing to do with mental health, are anxiety.
Steph Fowler can tick off a long list of conditions she was initially told were anxiety or otherwise all in her head: endometriosis, a stomach infection from H.pylori, insomnia, and mast cell activation syndrome. She was sent for a full neuropsychiatric evaluation before her doctors eventually diagnosed her with Long COVID. Figuring out what was really going on “is such a mixed bag,” she says. “It’s a combination of relief that somebody knows I’m not making it up, and that I can trust myself. Anger and frustration also come in, plus the grief of knowing it could have been different.”
Fowler, 43, a therapist in Chicago, has now shifted her practice to supporting clients who live with chronic and misunderstood illnesses, often helping them advocate for themselves when dealing with doctors who dismiss their symptoms as anxiety. “It’s been alarming to discover how common this is,” she says.
We asked experts what to do if a doctor doesn’t take your symptoms seriously and instead dismisses them as anxiety.
Bring someone to appointments with you
It’s helpful to have someone with you, Fowler says, especially if you tend to get nervous or have a lot of symptoms to remember. A friend “can help jog your memory, but also give outside validation and input about what they’ve seen happening,” she says. Some research suggests that physicians sometimes treat female patients differently than they do males; anecdotally, Fowler has found that if you bring a man to your appointment, “they might listen more,” she says. “I’ve unfortunately felt this and experienced this, and I know clients who have experienced this, too.”
Read More: 8 Symptoms Doctors Often Dismiss As Anxiety
Track your symptoms
Lots of apps—like Bearable and Visible—allow you to digitally track health symptoms like mood and migraines. The more information you can supply your doctor with, the better, Fowler says. Or you can simply use a pen and paper, writing down what you’re experiencing, the exact date and time, any potential triggers (like what you ate beforehand), and how long it lasted. “It’s an unfortunately necessary use of energy and capacity—which, if you’re sick, is limited,” she acknowledges. “But it can really help make your case and see trends over time.”
Describe your symptoms clearly
Good health care hinges on strong communication. Before talking to your doctor, spend time planning the best way to paint a vivid, accurate description of your symptoms, suggests Dr. Robert Gee, assistant dean of student affairs and a behavioral sciences professor at Ross University School of Medicine. “I’m short of breath even when I feel calm,” for example, tells a different story than “I feel anxious sometimes,” he says. Make sure you mention where you feel pain, what medications you’re taking, any associated symptoms, and whether anything exacerbates or relieves what you’re experiencing. Be prepared, too, to rate how severe your symptoms are on a scale of 1 to 10.
Encourage your providers to collaborate
Ideally, your provider will practice “collaborative care,” which means specialists like a psychiatrist or social worker are embedded within the primary care unit. That kind of integration can help ensure physical symptoms aren’t mistaken as mental-health symptoms, says Dr. Monika Roots, co-founder and president of Bend Health, which provides pediatric mental-health care. “They’re helping that pediatrician or family physician or internal medicine doctor think through, ‘Hey, have you looked at this lab, have you looked at that vital sign?”
Read More: Long Dismissed, Chronic Lyme Disease Is Finally Getting Its Moment
If you’re not able to go to a collaborative-care practice, you can still ask different doctors to communicate with each other. For example, Roots say, you could ask your primary care doctor: “Could you talk to the psychiatrist I’m also seeing?” Or ask your psychiatrist: “Could you talk to my primary care physician?” Doing so encourages collaboration, she says, and helps ensure doctors are comparing notes and making sure they don’t miss an important diagnosis.
Ask specific questions
You can help your doctor feel like you’re part of the team, Gee says. He suggests phrasing a request for additional workups like this: “Could we do a few extra tests just to rule things out? It would really help to put my mind at ease.”
If your doctor continues to brush off your symptoms as being all in your head, Fowler recommends responding like this: “If it’s not anxiety, what else could it be? And how are you ruling this out?” If your doctor still isn’t willing to run tests, ask them what symptoms—or duration of symptoms—would indicate they would be necessary. Doing so “helps the doctor show their work to the patient,” she says. “It helps make apparent why it is that they’re not thinking this is a heart attack or a stroke or any of the big scary things people might be concerned about.”
Ask your doctor to document that they opted not to pursue further testing
If you believe you need additional testing, and it’s not happening, tell your clinician you’d like that marked in your chart. “It’s a paper trail,” Fowler says. “It also causes doctors to slow down and consider that this is documented.” Upon reflection, they may decide to pursue more tests after all.
Appeal to your doctor’s human side
Fowler has found it can be helpful to ask: “If you had a loved one with these symptoms, what would your next steps be?” The question often spurs doctors to consider the situation with genuine patience and care. That way, “It’s not just the patient they’re seeing at 12:35 before their lunch break,” she says. “If it’s somebody they care about, they’re more likely to be engaged.”
