If you’ve ever had a doctor dismiss your symptoms or downplay how you feel, you’re not alone. A new study analyzing the experiences of more than 11,000 people with chronic conditions — including lupus — found that being ignored or not believed by healthcare providers can have serious emotional and physical consequences.

Dismissal Can Delay Care and Add to Emotional Burden

Researchers reviewed 151 previous studies involving people with conditions that are often misunderstood, such as systemic lupus erythematosus (SLE), fibromyalgia, and endometriosis. They found that many people faced “symptom invalidation” — when a doctor ignores, questions, or misattributes their symptoms. This often led to anxiety, depression, and in some cases, symptoms similar to post-traumatic stress disorder (PTSD). Some people even avoided or delayed future medical visits out of fear of being dismissed again.

“We found that patients can question reality,” said Allyson Bontempo, lead author of the review and postdoctoral fellow at Rutgers Robert Wood Johnson Medical School. “They ask, ‘Am I making this up? Is this all in my head?’ We also found symptom invalidation is associated with depression, suicidality, and healthcare-related anxiety that actually can rise to the level of trauma responses.”

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Dismissal was especially common when symptoms didn’t match textbook definitions, weren’t visible, or were blamed on stress or emotions. For people living with lupus, this can be a familiar and frustrating experience — especially when symptoms come and go or affect multiple systems in the body.

How To Be Heard and Taken Seriously

If you’ve ever walked away from a doctor’s visit feeling unheard, it can take a toll. Feeling dismissed may make it harder to trust your care team or advocate for what you need.

Researchers highlighted steps doctors can take to improve communication. Among them, Bontempo recommended that doctors validate people’s experiences, regardless of whether they can diagnose them.

“I don’t recommend reassurance about it ‘probably being nothing serious’ to patients who have a lot of distress about their symptoms,” said Bontempo. “Patients appreciate clinicians communicating their uncertainty and admitting they don’t know something.”

People living with health conditions such as lupus can also take steps to feel more empowered at medical appointments. Try to do the following:

• Keep records — Bring a list of your symptoms, when they started, and how they affect your daily life. A symptom tracker or health journal can help you communicate specifics to your doctor.
• Come prepared — Write down your top concerns ahead of time and ask direct questions during the appointment.
• Bring support — A trusted friend, partner, or family member can help advocate for you and remember what was said during the visit.
• Speak up — If something doesn’t feel right, it’s OK to say, “I don’t feel like my symptoms are being taken seriously.” Try to express concerns in a calm, constructive way — focus on how you feel rather than placing blame.
• Be collaborative — You can be assertive and appreciative at the same time. Let your doctor know what helps you feel heard, and acknowledge when something is working well.
• Reach out for support — Nurses, social workers, and support staff can be great allies in your care. They can answer any questions you have or help you communicate your needs with other healthcare professionals.
• Consider switching doctors — If you continue to feel dismissed or unheard, it may be time to seek a second opinion or switch providers. You deserve a care team that takes you seriously.

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Find Your Team

On MyLupusTeam, the social network for people living with lupus and their loved ones, members come together to ask questions, give advice, and share their stories with others who understand life with lupus.

Have you ever felt dismissed by a doctor? What helped you feel heard and supported? Share your tips and experiences in a comment below, start a conversation on your Activities page, or connect with like-minded members in Groups.