How can you navigate medical dismissal and get the care you deserve?
First, know that what you're experiencing is real and unfortunately common. Lupus often goes underrecognized because symptoms vary so much between people and can resemble other conditions. Women, especially, face dismissal in medical settings. The Show Full Answer
How can you navigate medical dismissal and get the care you deserve?
First, know that what you're experiencing is real and unfortunately common. Lupus often goes underrecognized because symptoms vary so much between people and can resemble other conditions. Women, especially, face dismissal in medical settings. The conflicting diagnoses you've received reflect how challenging lupus can be to diagnose, not that your symptoms aren't real.
Here are steps that have helped others feel heard:
Keep detailed records - Document your symptoms, when they started, how they affect daily life, and bring photos of visible symptoms like your butterfly rash. This creates a clear pattern doctors can't easily dismiss.
Bring a support person - Having someone with you at appointments can help advocate for you and witness what's said.
Ask for specific tests - Request the tests you need rather than waiting for doctors to suggest them. Be direct about wanting lupus-specific bloodwork if it hasn't been done recently.
Seek a second (or third) opinion - You deserve a rheumatologist who takes your symptoms seriously. It's okay to find a new doctor if one dismisses you.
State your needs clearly - Say things like "I need you to document my symptoms" or "I'm not comfortable leaving without a plan for these issues." A MyLupusTeam member who went through years of misdiagnosis shared: "I went through over 10 years of symptoms before I had the correct diagnosis. Lupus can present itself like many common illnesses, and doctors don't always know to test you."
It's worth noting that some people do have both lupus and fibromyalgia at the same time, so those diagnoses aren't necessarily contradictory. However, given your butterfly rash with lip involvement, swollen lymph nodes, joint issues, and the hospitalization for what was identified as an SLE flare, pursuing clarity on your lupus diagnosis seems crucial.
Take a deep breath. You're not going insane - you're dealing with a complex condition while trying to get proper care. Your strength in continuing to advocate for yourself, especially for your daughter, is admirable. Keep fighting for answers, and don't hesitate to find providers who will listen and validate your experience.
March 30
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