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Strategies to help women advocate for themselves and avoid misdiagnosis

Miles J. Varn, MD
Conditions
March 20, 2022
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While everyone faces some risk of experiencing a delayed diagnosis or misdiagnosis, some studies have found that the problem is more common for women. Women are 50 percent more likely than men to receive an incorrect diagnosis when they’re having a heart attack and nearly 30 percent more likely to receive an incorrect diagnosis for stroke. They are also diagnosed with cancer more than two years later than men and diabetes four and a half years later than men according to one large study from Denmark. For diseases that are more commonly diagnosed or exclusively diagnosed in women, including multiple sclerosis, lupus, rheumatoid arthritis, thyroid disorders, fibroids, and endometriosis, getting an accurate diagnosis can take five to ten years and require seeing multiple health care providers. The problem is even more prevalent for women of color.

There are several factors linked to delayed diagnosis and misdiagnosis in women:

Symptoms that are different than those men experience. Especially in the case of heart disease and heart attacks, women’s symptoms can be different than men’s, increasing the risk of misdiagnosis. While chest pain is common in men, women having heart attacks often report fatigue, shortness of breath, and jaw and arm pain as their main symptoms.

 Male-focused medical research. It wasn’t until 1993 that Congress passed a law that requires women to be included as clinical trial participants and some studies show that women are still under-represented in trials. This means that much of the information health care providers have as their knowledge base doesn’t address the different symptoms, anatomy, and reactions of women to both diseases and treatments.

Bias. Some studies have found an association between being a woman and health care providers being more likely to believe the cause of symptoms, especially pain, is psychological rather than physical. This can increase the risk of delayed diagnosis or misdiagnosis because the patient doesn’t receive needed diagnostic testing.

How to lower the risk of misdiagnosis

To decrease the risk of a delayed diagnosis or misdiagnosis, women should proactively advocate for themselves with their health care providers. These key steps are the foundation of effective self-advocacy:

Know and share your family and personal medical history. Provide all your health care providers with as complete a picture of your medical history as possible. Start by gathering and sharing your complete medical record with your providers. It’s also important to share your family medical history. For example, if one of your parents had a heart attack at a young age, your provider will know you’re at an increased risk for cardiovascular disease and may monitor your heart health more closely and interpret the symptoms women experience during a heart attack more accurately with that background knowledge in hand.

Speak up and ask questions. If your doctor doesn’t take your symptoms seriously or suggests it’s likely a psychological issue like anxiety instead of a physical health problem, ask what the top conditions that are associated with your symptoms are and why the doctor does not think one of those conditions is the cause of your symptoms. If you’re not comfortable speaking up, bring a family member, friend, or someone else who can advocate for you to your appointments.

Prepare for your appointment. Come to your appointment with notes that include a description of your symptoms, when they started, when and how often you experience the symptoms, what makes them worse and better, and what concerns you about the symptoms. This is also a chance to highlight any relevant family medical history that could be related to your symptoms.

Seek a second opinion. If you’re having difficulty getting an accurate diagnosis (or any diagnosis at all) with your current health care provider, get additional opinions from other providers. It may be helpful to seek your second opinion from a provider in a different medical specialty, for example, a cardiologist or neurologist, if you’re not making headway towards a diagnosis with your primary care provider.

Find a new provider. If your symptoms and concerns are consistently not taken seriously, and your questions go unanswered, it’s time to find a new health care provider. You should also look for a new provider if your current one does not treat you with respect or treats you judgmentally.

Miles J. Varn is chief executive officer, PinnacleCare, and can be reached on LinkedIn.

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Image credit: Shutterstock.com

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