This article is part of Health's series, Misdiagnosed, featuring stories from real women who have had their medical symptoms dismissed or wrongly diagnosed.
“Can you start dieting and exercising? Try to lose some weight?” That's what Jen Curran's doctor suggested after lab results showed she had abnormally high levels of protein in her urine. The old "lose weight" diagnosis, as Curran, 38, called it when she recounted the story on Twitter earlier in August.
She had just given birth to a baby girl, Curran explained in her Twitter thread. During her pregnancy, doctors found she had high blood pressure and increased levels of protein in her urine. She was diagnosed with preeclampsia, a potentially dangerous pregnancy complication, and put on bed rest for three months, she wrote.
But the high levels of protein were especially concerning to her obstetrician, who insisted Curran, co-founder of the Los Angeles theater and comedy school The Ruby LA, go to a kidney specialist after the baby was born.
So a few weeks after welcoming her daughter, Rose, into the world, she did just that. When Curran met with the specialist, the protein levels were even higher than they were during her pregnancy. (Protein spilling into the urine is usually an indication that something serious is going on, she pointed out.)
Still, the specialist decided weight loss was the cure. "Go lose some weight. Then the protein will go away. Come see me again in 4 months," Curran recalled the doctor saying.
"I wanted to believe her but it didn’t feel right to me," Curran wrote. She also noticed that the doctor was asking her questions but not listening to the answers. She would respond as if Curran had said the exact opposite of what she actually said.
Curran decided to go for a second opinion. This time, she got a recommendation for a specialist from her obstetrician. The new doctor took one look at her lab results and said, “This is not good. And there’s nothing diet or exercise can do to touch it.” Curran wrote that she wasn't entirely surprised.
After a kidney biopsy showed abnormalities in her blood, Curran was referred to a hematologist-oncologist, who then biopsied her bone marrow. The oncologist diagnosed her with multiple myeloma, a rare blood cancer.
"No other tests came back abnormal. I wasn’t and still am not feeling unwell. They barely found it. If I hadn’t had the baby, they wouldn’t have found it until it was possibly way too late," she wrote. "And if I hadn’t gotten a second opinion? Duh. I‘ll already be weeks into chemo by the time the followup with that first kidney doctor rolls around. And who knows how much longer it would have taken her to diagnose me?"
Curran's story is scary reminder of why it's important to trust your gut and advocate for yourself when you believe something is seriously wrong with your health. Unfortunately, she's not the first to bring troubling symptoms to a doctor's attention and have them wrongly dismissed as weight-related.
A 2017 review of research presented at the annual convention of the American Psychological Association found that fat-shaming by doctors was a significant problem, one that could lead MDs to not take a patient's complaints seriously because of their size or jump to the conclusion that their weight is the cause of their symptoms. Anecdotally, more reports are surfacing about women who say their health issues were blown off because a doctor didn't look past their size.
Sizeism is just one reason many women don't feel heard by their doctor. "There are many reasons that physicians might be dismissive of a patient, not just their weight," Mark Graber, MD, chief medical officer of the Society to Improve Diagnosis in Medicine, tells Health. "It may be because of their race, gender, lifestyle habits, or any number of things that put the physician off. It's a pretty common thing."
Of course, it's crucial to make sure medical professionals evaluate your health without jumping to conclusions based on your size or some other factor. So with the help of experts, we put together this checklist to ensure that your health concerns are taken seriously by physicians.
Vet doctors before scheduling a visit
Rather than just going to the doctor's office nearest your house, do some research to find the most highly reviewed doctors in your area. "Fellow patients often note how they were treated by the doctor, how much time he or she spent, how well they listened, etcetera," says Cynthia Sass, RD, Health's contributing nutrition editor. This will help you weed out doctors who don't have a good rep when it comes to listening to their patients. You could also follow Curran's example by getting a recommendation from a doctor you do trust.
Another tool to use is the Health At Every Size registry, Christy Harrison, RD, certified intuitive eating counselor and author of Anti-Diet, tells Health. The registry allows you to search for physicians in your area who have pledged to "honor differences in size, age, race, ethnicity, gender, dis/ability, sexual orientation, religion, class, and other human attributes."
Bring a list of talking points
"List your symptoms clearly and succinctly," Abby Norman, science journalist and author of Ask Me About My Uterus: A Quest to Make Doctors Believe in Women's Pain, tells Health. "Apps that help you track [symptoms] can be helpful too, especially for noticing trends over time." Having a list on hand during your visit can keep you from forgetting anything. Plus, it serves as an outline for the conversation.
If the doctor tries to steer the conversation toward weight, direct it back to your list. "Ask the doctor to take weight out of the equation and give you recommendations that have nothing to do with weight or weight loss," Harrison advises. You could even ask them what would they prescribe to a thin person with the same symptoms.
Stand your ground
"If your doctor tries to attribute your symptoms to your weight, ask what else can be ruled out and how," Sass suggests. Be vocal about new stories you've read about people who had serious diseases blamed on their size. "Tell them that these stories are examples of weight stigma being a barrier to health, and that you don’t want weight stigma to get in the way of your treatment," Harrison says.
You can also ask your MD to make a note in your file of anything they say during the appointment. For example, if you ask to get lab tests done and the doctor says that isn't necessary, ask them to make a note of it. There's a good chance they'll change their mind.
Still not satisfied with how things went? Tell your doctor that you would like to get a second opinion, and ask if they can recommend another provider. "Your doctor works for you, not the other way around. You can hire and fire them just like any other service provider," Harrison says.
Take a loved one with you
If you've had a bad experience with a doctor before, you may be anxious about your appointment. "Having someone with you can help you stay calm, focused, and open," Norman says. It could also be helpful to ask your loved one to take notes for you. "That way, you can stay present in the discussion and advocate for yourself without missing, or misinterpreting, the key information your doctor shares with you."
Recap the appointment to your doctor
Summarizing what went on in the appointment with your doctor is "teach back," as Norman calls it. "This involves explaining back to your doctor what they told you during the visit," she says. "It gives you a chance to let them know what you heard, which may not be what they said or meant to say, and gives them the opportunity to clarify or correct the information."
It's best to teach back before you leave the appointment. But if you think of a follow-up question once you're home, don't hesitate to call the doctor's office and get the answer you need.
If you have a story to share about being misdiagnosed, email us at [email protected] and join our Misdiagnosed Facebook community to talk to women who share the same struggle.
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