Invisible Illness
When Condescension Kills
Why medical gaslighting made it hard for me to seek out a diagnosis of my autoimmune disease
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.
Why?
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.
Originally published at https://themighty.com.
