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Why Medical Gaslighting Made It Hard for Me to Seek Out a Diagnosis

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My immune system’s betrayal began with such small, innocent things.

Little red, itchy dots on my arms and legs, coming and going with no consistent cause and no lasting harm. I Googled and asked the WebMD. Hives. OK. Maybe I’ve developed an allergy to my detergent. I changed it, but the little red dots still came and went. They didn’t bother me too much, so I went on my way and tried to pay them no mind.

One day my eyelid began twitching. A tiny muscle pulsed and writhed until I pressed my finger into it, willing it to stop. A few days later, it was my thumb, moving on its own to a beat I could not hear. The muscle dance changed partners to keep me guessing. Sometimes a rumba in my shoulder. Other times a cha cha in my cheek. I thought, maybe stress? But it caused me no pain and each episode never lasted long, so I pushed it aside.

Then my eyes became so dry I could no longer wear contacts, no matter how often I used drops. Must be allergies. No cause for alarm.

I developed fatigue that never seemed to fade, no matter how long I slept. I had a general feeling of being unwell, on the verge of becoming sick, but the illness never came. So why see a doctor? As a working mother, perhaps this was just to be expected from burning the candle at both ends.

A year later, my immune system had escalated from these light skirmishes to an all-out war. I had crushing, electrifying, aching pain everywhere that I could not ignore. My weariness was a weight I could no longer carry.

I finally accepted, I am no longer what I was, and I wanted to know why. I found my answer, though it brought me little solace. Rheumatoid arthritis with a side of peripheral polyneuropathy and Sjogrens’ syndrome thrown in for a bit of spice.

No one gets hives or a twitchy muscle or two and thinks autoimmune disease. But no one should feel sick and tired all the time and write it off. I knew something was wrong, but I never sought a doctor’s care.


Long before chronic illness entered my life, doctors were disbelieving and minimizing my concerns, my pain, me. So I did the same. Only after reaching a crisis point did I finally fight for my right to be heard and seen and treated like a rational person who knows when something just isn’t right.

Trust your instincts more than a doctor’s M.D. Value your well being more than your pride. Condescension can only kill if we allow it to prevent us from finding a doctor who will listen and believe. When I finally trusted my own judgment more than I cared about a stranger’s, it was easier than I expected to find the help I needed.

Getty image by noiponpan.

Originally published: May 1, 2019
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