The story of Tilly
When I was just five years old, I visited my great aunt’s farm in Ireland and ate a bowl of cereal with a jug of thick, creamy milk; an act which was set to change my path forever. Unbeknown to me, this was unpasteurised milk, straight from the cow’s udder, containing M. bovis Tuberculosis.
For the next 13 years my life became a constant cycle of ambulances, hospital admissions, waiting rooms, procedures, repeated pneumonias and major surgeries as I desperately searched for a diagnosis.
Things hit rock bottom when, in my second year of university, the doctors announced all the tests had been done. The antibiotics were no longer effective. Whatever this illness was, was going to kill me.
My mum pleaded with the medics to do more tests and, after another admission for yet another bout of pneumonias, a consultant called me at home. She’d done a test for Tuberculosis. It had come back positive.
I commenced 18 months of lifesaving chemotherapy treatment for multi-drug resistant M. bovis TB.
I saw over 50 consultants, at over 15 hospitals. I describe this illness as a cruel one, for it wasn’t just a case of being ill, it was a battle; a battle to be believed, a battle to be diagnosed and, eventually, a battle to be treated.
Just when I thought I’d got rid of that ‘patient’ label and finally had my life back I went into my first life threatening adrenal crisis (turns out having TB for that long can really mess up your body). For the last three years I have been navigating life with extremely unstable Addison’s Disease; three years of lifesaving emergency injections and now a hydrocortisone pump injecting steroid through a cannula into my body 24/7 to keep me alive.
In 2021, I began my #LifeBehindTheLens campaign, opening up about the reality my health situation online and presenting the not-so-perfect life, often not shared on social media. I saw first-hand how my experiences resonated with followers.
I have just signed with a brilliant literary agency with my memoir, Be Patient, a warm, darkly comic account of my own desperate search for a diagnosis, against the backdrop of a hilariously funny, heartfelt and, at times, shocking insight into life as the patient. My ‘something good, out of something bad’.