Becoming a ‘Cushie’ and Taking the First Step in My Healing Journey

I’ve always been an anxious girl. I had friends growing up, but I tended to stick close to my parents and spend time with adults rather than meeting kids my age. Over the years, my anxiety worsened, and I developed depression, too. But despite my challenges, I achieved good grades at school and took part in extracurricular activities: I was a member of the swim team and took piano and karate lessons. Everything changed during my last two years of university, as the life I knew began to fall apart. 

My name is Katherine, I go by “Kat,” and I had Cushing’s syndrome. I say “had” because, technically, I am cured. My cortisol levels are normal and I have no physical limitations. I’ve named my column “Perpetually Cushie” because my experience with this disorder has forever changed my life.

I was 10 when I observed my first sign of Cushing’s disease. On a camping trip with my parents and best friend, while wearing my bathing suit, I noticed long, purplish lines on my inner thighs. I pointed them out, but we thought nothing of it. Reflecting on it now, I realize that it was unusual for a 10-year-old of average body weight to have stretch marks.

During my sophomore year of college, I developed other physical signs. I began gaining weight. I was active and had been able to eat whatever I pleased. However, that year I became heavier, but chalked it up to the “freshman 15.”

Slowly over my junior year, I started to feel unlike myself. I gained more weight and developed severe acne after years with a clear complexion. I was continually lightheaded while sitting, standing, walking, moving my head, or keeping still. My dizzy feeling didn’t change according to my levels of hunger, thirst, or tiredness. I was fatigued and experienced “brain fog,” making focusing at school increasingly difficult. I had trouble sleeping and needed to get up numerous times during the night to use the restroom.

My symptoms worsened, forcing me to move home for my senior year. I gained more weight, was sleeping less, and then I began having daily migraines. I was in pain, every joint in my body hurt. I began to work out to try to lose weight and ate little, but I couldn’t drop the extra pounds. I eventually became so weak that I was unable to walk on the treadmill. Soon my mom had to help me out of bed in the mornings.

As my physical activity diminished, I went from restricting my food intake to being unable to control my relentless hunger. I was ravenous, eating frequently, and consuming bigger portions than my dad at dinnertime. I went from 110 pounds to 180 — I gained the final 20 in one month. A weird symptom that remains unexplained was extreme tooth sensitivity. I couldn’t breathe through my mouth in an average-temperature room without tearing up with pain. 

My hands shook uncontrollably — a symptom that would finally shine a light on my disease. All the doctors I had consulted about my symptoms during that year said I was experiencing anxiety and depression. My history with anxiety didn’t help my case, but I knew that something more was going on. During one doctor’s visit, when I drew his attention to the tremors in my hands — due to excess cortisol — he performed a physical exam.

For the first time, a doctor saw me without a sweater and long hair hiding my neck. He observed my body shape, which had the typical “buffalo hump” and “moon face,” fat accumulation in my trunk, and supraclavicular fat pads. He suggested that I see an endocrinologist.

His referral marked the first step of my healing journey when I began to feel like myself again.

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