How I overcame medical gaslighting on my journey with Cushing’s

I was diagnosed with Cushing’s disease two years ago, at age 30. Last year, I had surgery to remove a 3 mm pituitary tumor. The tumor was causing a host of symptoms, including weight gain, moon face, buffalo hump, muscle weakness, bone pain, fatigue, and hair loss, resulting in a poor quality of life.

The problem is that Cushing’s disease is rare, so many doctors don’t know much about how to diagnose or treat it. This lack of understanding caused my diagnostic and treatment journey to be long and challenging.

Shortly after my diagnosis, I learned that rare diseases are often represented by a zebra. Dr. Theodore Woodward, a medical researcher and Nobel Prize nominee, once said, “When you hear hoofbeats, think horses, not zebras.” He was referring to how doctors are taught to first look at the most common causes of symptoms presented, rather than possible rare ones.

I understand the logic behind this, but what happens when doctors don’t seem to believe that zebras exist at all?

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Medical gaslighting

Imagine going to a doctor’s office. You explain all of the symptoms you’re experiencing and how they’ve diminished your quality of life. The doctor has their nose in the computer, poking their head out only occasionally while seemingly half-listening to what you’re saying.

You’ve waited for this appointment for months, and the doctor gives you minutes. They seem disengaged, rushed, and uninterested, but you persevere, hoping to find answers to what ails you. Eventually, the doctor looks up at you, only to 1) say they don’t believe you, 2) suggest basic lifestyle changes, or 3) refuse to order any testing.

Congratulations. You have just endured medical gaslighting.

According to GoodRx, “Medical gaslighting is when a healthcare provider dismisses your complaints or concerns. They don’t seem to take you seriously or blame your symptoms on a vague cause (such as stress). And they may send you home without a proper diagnosis or treatment plan.”

My experience

In the years before my diagnosis, I’d occasionally bring up the idea that I might have Cushing’s, but many doctors brushed off my concerns. I was told my high blood pressure could be chalked up to nerves, and my rapid weight gain could be reversed by eating a low-calorie diet. My buffalo hump was simply a result of my weight gain.

Eventually, I stopped asking questions and noting my symptoms. These exchanges with healthcare professionals felt defeating and made me question my own reality. Was I actually experiencing serious symptoms, or was it all in my head?

It took time to realize I wasn’t crazy or making up my health issues.

How to recognize and respond

In order to combat medical gaslighting, I had to first acknowledge it and learn to recognize when it was happening. To help prevent it, I worked to find a doctor who’s very familiar with Cushing’s disease and how to treat it.

Throughout my journey, I learned that I had to advocate for myself and ask questions. I also needed to show my doctors what I was experiencing. I did this by documenting my symptoms at their worst.

Processing with therapy the emotional turmoil of this disease and the gaslighting I experienced was absolutely critical.

Lastly, I relied on my support group. It was enormously helpful to talk with people who routinely replied, “I get it.”

If you believe something may be wrong with you but feel you’re not being heard, I encourage you to speak up. If one doctor doesn’t want to listen, find one who will.

How have you combated medical gaslighting? Please share in the comments below.

Note: Cushing’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cushing’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Cushing’s.