For thirteen years, I lived with undiagnosed Cushing’s disease while more than forty doctors treated its individual effects without identifying the pituitary brain tumour connecting them. I experienced mass medical betrayal where every doctor looked past the signs in front of them to place the blame for my illness on me, telling me to change my lifestyle with diet and exercise, and “lay off the biscuits & crisps” despite me telling them I don’t eat those things and I was a nutrition & exercise expert being an elite international athlete and professional chef. 

The disease caused my weight to rise from ten to twenty-seven stone, completely outside of my control despite me trying to stop it. My body and appearance changed beyond recognition, and I gradually lost my mobility, independence, health, self-esteem and very nearly my mind, while continuing to build businesses and attempt to lead an outwardly successful life.

By the time I was diagnosed, nearly dead, the physical signs were so extreme that an experienced consultant recognised them from across an A&E ward – yet I was found by chance only because he happened to walk past. I later endured prolonged critical illness, three major brain surgeries and a traumatic attack by three rogue doctors in the middle of the night while too vulnerable to protect myself. Recovery from Cushing’s does not end after surgery. I am still rebuilding physically and psychologically, and I will require medical monitoring for the rest of my life.