How self-advocacy can lower the risk of misdiagnosis for women

A man and a woman, who are both having a heart attack, go to the emergency room. But it’s 50% more likely that the woman will be misdiagnosed than the man. If they were both having a stroke, the woman is nearly 30% more likely to receive the wrong diagnosis. Why is the woman’s risk of misdiagnosis so much higher than the man’s and what can women do to lower this risk?

Everyone faces some risk of being misdiagnosed and these errors in diagnosis can lead to serious injury or death. One study by researchers at Johns Hopkins University School of Medicine found that diagnostic errors for patients with vascular events (such as stroke), cancer, and infections are responsible for nearly 75% of serious harms from misdiagnosis.

But while misdiagnosis is a risk for all, some studies have discovered that the risk is significantly greater for women. Not only are women misdiagnosed at a higher rate, they’re also more likely to experience a delay in diagnosis that can negatively affect their outcomes. Women are diagnosed with cancer more than two years later than men and diabetes 4.5 years later according to one large study from Denmark.

And for diseases that are diagnosed more commonly or only in women, including fibroids, endometriosis, thyroid disorders, multiple sclerosis, and autoimmune diseases like lupus and rheumatoid arthritis, getting an accurate diagnosis can take five to ten years and require seeing multiple healthcare providers. The problem is even more prevalent for women of color.

Why women are at higher risk of misdiagnosis

There are several factors that are linked to a delay in diagnosis and misdiagnosis in women:

• Differences in symptoms: Chest pain is the most common symptom for men having a heart attack, for example. But women having heart attacks often report fatigue, shortness of breath, and jaw and arm pain as their main symptoms. For women who are having a stroke, in addition to typical stroke symptoms, they also are more likely to report additional symptoms, including nausea, a racing heartbeat, fatigue, and chest pain. These differences in symptoms have been associated with women’s increased risk of misdiagnosis.
• Not enough women included in medical research: Women have not historically been included in clinical trials of drugs or studies of medical conditions. In fact, it wasn’t until 1993 that a law was passed in the U.S. that requires women to be included as clinical trial participants. In spite of that law, some studies show women are still under-represented in trials. Because of that, much of the information available to healthcare providers doesn’t take into consideration the different symptoms, anatomy, and reactions of women to diseases and treatments.
• Medical bias. Some studies have found a link between being a woman and a higher likelihood of healthcare providers diagnosing a psychological cause for symptoms, especially pain, rather than a physical cause. This bias can increase the risk of a delay in diagnosis or incorrect diagnosis because the patient doesn’t receive the diagnostic testing she needs.

Self-advocacy can lower the risk of misdiagnosis

One of the most effective ways to decrease the risk of a delayed diagnosis or misdiagnosis is for women to proactively advocate for themselves with their healthcare providers. Effective self-advocacy starts with these steps:

• Know your medical history. Give all healthcare providers as complete a picture of your medical history as possible by gathering and sharing your comprehensive medical record and family medical history. Here’s how that information can help. If one of your parents had a heart attack at a young age, for example, your provider will know you’re at an increased risk for cardiovascular disease and can monitor your heart health more closely and interpret any symptoms more accurately with that background knowledge.
• Ask questions. If your provider doesn’t take your symptoms seriously or says the cause is most likely a psychological issue like anxiety instead of a physical health problem, ask what the most common conditions associated with your symptoms are. You should also ask why the doctor doesn’t think one of those conditions is the cause of your symptoms. If you’re not comfortable speaking up, bring a family member, friend, or a health advisor with you to advocate on your behalf and help you get answers.
• Prepare before your appointment. Providers respond well to succinct, factual symptom descriptions. Bring notes that include a description of your symptoms, when they started, when and how often you experience them, what makes them worse and better, and what worries you about your symptoms.
• Get a second opinion. If you’re having trouble getting an accurate diagnosis (or any diagnosis) with your current healthcare provider, seek a second opinion. Consider getting the second opinion from a specialist to get a different perspective.
• Change providers. If your current provider consistently does not take your symptoms and concerns seriously and doesn’t answer your questions, find a new healthcare provider. You should also look for a new provider if your current one doesn’t treat you with respect or is dismissive or judgmental.