Tilly Rose is the author of the bestselling memoir ‘Be Patient’ and a patient advocate. On her Instagram @thattillyrose she shares the daily reality of life as a patient, living with multiple rare health conditions, including Addison’s disease (primary adrenal insufficiency). 

Part 2 of Be Patient covers Tilly’s experience of living with undiagnosed adrenal insufficiency, culminating in her first adrenal crisis. She shares the challenges of reaching a diagnosis and the difficulties of navigating emergency protocols, lifesaving injections and medical alert bracelets.

Here Tilly reflects on the “double life” of living with Addison's, celebrating major life moments while simultaneously calculating cortisol doses, managing symptoms, and dealing with emergencies. She explains how her book launch became another balancing act of life as a patient, resulting in her being admitted to hospital in adrenal crisis just 48 hours later.

Tilly's journey continues, showing the resilience of patient life! Having just won EURORDIS (Rare Disease Europe) Social Media Award 2026, she continues to use her lived experience for advocacy to improve rare disease and patient care. 

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My Book Launch

Last year, on World Book Day, I was getting ready to share my memoir Be Patient with the world. Totally ‘on brand’, I handed in my manuscript whilst tied to a 24-hour oxygen machine in a hospital bed in Germany. I had gone over there in November 2023, for what I thought was going to be one lifesaving surgery to fix a diagnosis of multiple vascular compressions. This meant major blood vessels in my body had become squashed, stopping blood flow to major organs. Sadly, having these compressions undetected for so long had done so much damage to other systems in my body. It was also making my Addison’s disease (primary adrenal insufficiency) impossible to manage.

It was seriously touch-and-go but my incredible German medical team were determined I’d make it back to the UK for my book launch at Daunt, Marylebone. They knew how much this moment meant to me.

This night exposed the double life of being a patient more than ever. In so many ways it was the dream. My book launch was attended by over 200 people, from press, to influencers, charities, medical organisations, fellow patients, as well as friends and family. Donna Ashworth, Giovanna Fletcher, Abi Morgan and Frankie Bridge endorsed Be Patient. I still can’t believe their names are on the front of my book. The Times had just coined Be Patient, “an antidote to This is Going to Hurt… the other side of Britain’s hospital wards.” 

 

The atmosphere in the room on the night of the launch was electric. It felt like everything I had manifested from my hospital bed was finally happening, only in my version of events, By the time Be Patient was launched, I would no longer be a patient (a girl can dream!).

What I didn’t envisage was spending my book launch with agonising flank pain, with my adrenal glands screaming out for more cortisol. I didn’t envisage hiding in the toilet, filling up a syringe with an emergency vial of hydrocortisone using my ADSHG injection kit. I didn’t envisage 48 hours later ending up in critical care in a London hospital. This was not the plan.

I find uncertainty to be one of the biggest challenges of patient life and my Addison’s makes everything so much harder to manage; a constant guessing game of how much cortisol I’ll require to get through. So much of my life is spent reacting to situations, with no choice but to be adaptable because I never know what’s around the corner.

One of the ‘Patient Survival Tips’ I share in Be Patient is: ‘There is a difference between surviving and living. Be respectful of your body but seize life when you can.’

I have spent so much time watching life unfold from the sidelines but despite the horror show surrounding the book launch, I’ll never regret seizing that moment because that night I was there in the centre of it. It’s a memory I will have forever and no one can ever take that away.

If you look at my Instagram reel from the evening, from the outside you’d never know the double life that I was having to navigate throughout the evening. The reality was quite different. Be Patient is an acknowledgement of that daily reality so many patients are dealing with that so often isn’t visible to the world.

View this post on Instagram

A post shared by Tilly Rose │ Chronic Illness (@thattillyrose)

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Mission to impact patient care

Be Patient has become ‘more than a memoir’; it is part of my wider mission to impact patient care. I am now working with the NHS Confederation and global medical organisations and charities to give patients a voice. Following my coaching qualification from University of Cambridge, I am coaching chronically ill patients, as well as training medical organisations and bio-techs in the importance of understanding the patient perspective. In October 2025, I opened and closed the Global Tuberculosis Summit. I am now partnering with Mumsnet to raise awareness on ‘Medical Misogyny’.

 

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Volunteering with the ADSHG

In December 2025, I was delighted to volunteer with ADSHG for the Neurocrine Conference at The Royal Society of Medicine, alongside Professor Rees and other healthcare professionals. We hosted an intimate session with a small group of employees and later gave a presentation to the whole company. 

I discussed the challenges adrenal insufficiency patients face with so many in the medical community still not understanding our condition; being discharged without lifesaving emergency injections, not being told we need medical alert ID, A&E departments not following the protocols and guidelines laid out in the official documents, staff not understanding the importance of time-critical medications, how we are rarely seen by endocrinologists in hospital as inpatients, how we are often only offered appointments once a year and the absurd nature of having to make up and administer the powder/water injection at a time when we are critically unwell. This gave me a brilliant opportunity to voice the struggles of so many people living with Addison’s and adrenal insufficiency!

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EURORDIS Social Media Award Winner!

Just last week, Mum and I headed to Brussels for EURORDIS (Rare Disease Europe) award ceremony where I had been shortlisted as one of three finalists across Europe for their Social Media Award 2026 for my patient advocacy and contribution to rare disease awareness. On a personal note, it has been incredible to see just how far I have come health wise over the last year. I was able to board a plane, not to head to a hospital but to partake in an awards ceremony on an international stage and even more excitingly, I won!

In my speech on the evening, I shared my medical journey, including living with Addison’s (primary adrenal insufficiency) and advocated the importance of organisations like EURORDIS and the power of social media in opening up healthcare conversations on a global scale. I continue to remain so grateful to organisations such as ADSHG for the valuable support they provide patients and loved ones, living with rare diseases, still so often not well-understood by the medical community.

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Dandelions 

In Be Patient I write, “Dandelions don’t just grow in lush green fields but in the rough cracks between the pavement.” Dandelions have become my symbol for all the incredibly brave patients I have met along the way.

Just as dandelions blow in the wind and spread their seeds to ensure other dandelions bloom, Be Patient was my little seed of an idea that grew from my hospital bed, one of the roughest cracks of all. Now those bright yellow buds are emerging in places I never could have imagined. 

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