To celebrate World Book Day, we speak to Tilly Rose, an author and activist championing access to higher education and patient advocacy. After 20 years as a patient, Tilly made the decision to share her patient journey on Instagram and saw, first-hand, how her experiences resonated with followers.
Sharing her story online inspired Tilly to write her first memoir, Be Patient. The quote below from Tilly's upcoming book highlights her experience of living with adrenal insufficiency.
Storms are usually fleeting. They rumble for a while, then build up to a dramatic crescendo and explode. In the aftermath, it takes time and effort to clear the path but one day, the sun peeps through the clouds and patches of blue appear again. I thought that first adrenal crisis was the biggest storm I’d have to weather.
Instead, I’m stuck in perpetual sleet and snowstorm with no promise of blue skies ahead.
Tilly Rose
Tilly Rose talks us through her experiences of adrenal insufficiency, the struggle to be understood by healthcare professionals, her memoir Be Patient, and wider activism work to impact patient care.
Diagnosis
Like so many of you, I was diagnosed when I descended into my first adrenal crisis in 2018. The run-up involved months spent slowly deteriorating at home with a list of non-descript symptoms. I googled and googled ‘leg cramps’, ‘flank pain’, ‘morning nausea’, ‘dizziness’ and ‘exhaustion’, but it was all so vague. I could feel that my body was shutting down, but I couldn’t find an explanation.
When the medics couldn’t work out what was wrong, as is so often the way, they suggested I was perhaps ‘stressed’. Enter a referral to a psychologist, who told me that I needed to change my mindset:
"Tilly, it’s time to start adapting to life as a well person."
How could I adapt to life as a ‘well’ person when I was feeling so unwell?
Crisis
The day before my first adrenal crisis, I was so weak that I could no longer walk up the stairs. My mum had been relentlessly researching my symptoms, and when I collapsed on the hall floor with excruciating flank, leg pain, dizziness and started vomiting and turned cold and clammy, she called an ambulance.
“I think my daughter may be going into an adrenal crisis.”
My synacthen test later proved she was right. I was diagnosed with adrenal insufficiency (though which type remained a mystery). Although this was, of course, really frightening, I was mostly relieved. At last, I had a diagnosis to explain my symptoms. I could take my meds and start living my life! Well, that’s what I thought…
The Reality
Far from living a normal life, in the years that followed, my adrenal insufficiency remained so unstable that I could never regulate my steroid dosages, and the emergency steroid injection became a regular feature. It later became apparent that I had other medical conditions which were constantly putting my adrenal glands under strain. This is something I feel adrenal insufficiency patients should be aware of; if you aren’t managing to stabilise your cortisol levels, think, could another condition be impacting this?
During this time, I began sharing ‘chapters’ of my 20 years of life as a patient on my Instagram @thattillyrose and saw how far from being alone, there are so many zebras out there navigating the challenges of living with rare conditions, still not well understood in medicine.
My own experiences made me even more determined to raise awareness and impact change.
‘“Do they understand about Tilly’s Addison’s disease?”
“Yes, yes,” the nurse responds.
“Do they know about her emergency procedure?”
“Handover will all be done Mum, don’t you worry.’’
Quotes from Tilly's book ‘Be Patient’
Sadly, as you guys know only too well, we have had good reason to worry;
Over the years, I’ve been handed over to wards where they don’t understand adrenal insufficiency, regularly told I probably have a ‘little sickness bug’ when I’m vomiting up my hydro and constantly battling a system that doesn’t understand the importance of taking my hydrocortisone on time or the need for the emergency injection when things deteriorate.
From connecting with other adrenal insufficiency patients online, I have seen this is a pattern that emerges again and again. It has to change!
Be Patient
My upcoming book Be Patient has become my ‘something good, out of something bad.’
Be Patient is a warm, candid account of my desperate search for a diagnosis, against the backdrop of a funny, heartfelt and at times, shocking insight into patient life.
Part 2 of Be Patient covers my experience of living with undiagnosed adrenal insufficiency, culminating in my first adrenal crisis. It details the challenges of reaching a diagnosis and the difficulties of navigating emergency protocols, lifesaving injections and medical alert bracelets.
Doing for hospital patients what Adam Kay's ‘This is Going to Hurt’ did for doctors, Rose's wry and irony-rich memoir of life as a 'medical mystery' shines a much-needed light on life in the waiting room and ward.
Waterstones (2025)
For World Book Day 2025, I’m delighted to be collaborating with Addison’s Disease Self-Help Group to share Be Patient as part of my wider activism work to impact patient care. Be Patient is published on 17th April 2025.
We ask Tilly our most asked "Addison's Admin" questions
How do you remember to take your steroid replacement medication?
I set steroid alarms throughout the day on my phone and also use a tablet sorter, which I make up ahead of each week.
How do you carry your injection kit?
I ordered my injection kit from ADSHG and always carry it in my handbag, so it is with me everywhere I go. My mum also always carries a spare injection kit. I also always have a strip of hydrocortisone tablets on me.
What type of medical alert identification do you have?
I have an emergency ID set up on my phone. I also wear a silver bracelet with the universal medical alert symbol on, engraved with ‘Addison’s disease’ on the back. I have even included this medical alert symbol in Be Patient, as I’m determined that more people need to know about it! This symbol of Asclepius’ healing rod can save lives!
Hear more from Tilly
After 20 years as a patient, Tilly made the decision to share her patient journey on Instagram and saw, first-hand, how her experiences resonated with followers. She now shares her personal story in ‘chapters’ on @thattillyrose and recently launched @thatpatientcollective – a platform for other patients to share their stories and support each other along the way.
Written with humour, warmth and hope, Be Patient shines a bright hospital strip light onto the entire patient experience.
Tilly Rose
Tilly Rose is an author and activist, championing access to higher education and patient advocacy.
Be Patient is her first memoir and part of her wider mission to impact patient care.
Supporting people with Addison's and adrenal insufficiency
In April 2023, Tilly's boyfriend's brother, Oscar, ran the London Landmarks Half Marathon to fundraise for our charity. Watch Tilly's brilliant reel from the day on her Instagram. Thank you, Tilly, for your ongoing support of our charity, so we can continue our mission to raise crucial awareness and provide essential medical education.
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