Something Is Wrong with Me

But No One Believed Me. How 15 years of misdiagnosis masked a rare disease that was quietly destroying my mind and body.

For over 15 years, I lived with a tumor in my brain.

It was on my MRIs — not once, but twice. Yet doctors brushed past it. I was told it was probably nothing. Meanwhile, my body was crying out in every way it knew how.

Photo by The Cleveland Museum of Art on Unsplash

I was exhausted. Not the kind of tired you fix with sleep, but the kind of tired that plants itself in your bones. I could barely move by the end of each day. My moods swung unpredictably. My muscles weakened. My thoughts blurred. I forgot what I was saying mid-sentence.

And still, no one found the source.

Instead, I was sent to therapy. For 20 years. We unpacked trauma. Blamed my father. Talked about my childhood. I was labeled with anxiety and treated with anti-depressants and mood stabilizers. But none of it helped.

Because this wasn’t psychological. Not entirely.

It was Cushing’s disease.

A tumor in my pituitary gland was flooding my body with cortisol, a stress hormone. I was in full-blown fight-or-flight mode all the time — and I had no idea.

As Cushing’s Disease News columnist Vanessa Nguyen wrote of her own journey:

“The chemistry in my brain had changed due to hypercortisolism… scars are deeper than the eye can see — they are imprinted on my psyche.”

Her words mirrored my own experience: the shame, the disconnection from your body, the feeling that you are losing yourself. Vanessa was bullied for her weight. I was terrified of mine. She lost hair by the handful. My face changed so drastically I didn’t recognize myself.

We both knew something was deeply wrong — but like so many Cushing’s patients, we were dismissed. Because it’s rare.

“Cushing’s disease affects an estimated 10 to 15 out of every million people,” writes medical expert Fedela. “The body reacts to the hyper-stimulation by constantly being in a state of fight or flight. It’s 24/7 with no relief.”

That’s exactly how it felt: like my body was preparing for danger that never came. My nervous system never shut off. My brain was hijacked. I wasn’t just exhausted — I was under siege.

I was also functioning. Working. Parenting. Buying a house. Being “fine.”

And that’s the most twisted part of it: I looked just functional enough to be ignored.

Cushing’s is pretty. Ugly. Silent. Violent. And this was just the beginning.

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