Tilly Rose: 'I have realised this story is so much bigger than just me'
BY Alessia Quaranta
8th Apr 2025
Tilly Rose studied on our Writing Your Novel – Three Months course and our Five-Day Memoir Writing Intensive in 2020. Her memoir, Be Patient: Life, loss and laughter from behind the hospital curtain, comes out on 17 April from Octopus!
We spoke to Tilly about the challenges she faced in writing about her search for a diagnosis, and how storytelling – specifically memoir – can help others process their own difficult experiences.
Tilly, you were a student on our Writing Your Novel – Three Months course and our Five-Day Memoir Writing Intensive in 2020. What key insights did you gain from studying with us?
Over the years, I’d heard authors talk about how their finished book was completely different to the story they had set out to write, how they’d binned multiple manuscripts along the way but how this was all ‘part of the process.’
Throwing away an entire manuscript – surely not? I remember thinking.
Fast forward a few years, I’d officially ‘binned’ my YA manuscript, treating it as a ‘good practice’ and I was moving onto my next novel and memoir. Like lots of writers, I was full of ideas but I needed to learn how to structure them into actual books.
This is when I decided to apply to CBC. I was so excited when I was offered a place on both the selective novel and memoir courses.
I learnt so much on the courses about how to shape all the ideas whizzing around in my head into actual narratives, with movement and structure. I was also given a real insight into what felt like the mysterious world of submitting to agents and being provided with feedback on my proposals. Applying for the CBC courses was the best thing I ever did. I went on to be offered representation for Be Patient by five agents, something that seemed totally impossible before. I am so grateful to CBC; you played a huge role in Be Patient’s development from a few funny scenes drafted on a Word document, into a book now ready to be shared with the world!
Many of our students find lifelong writing friends on our courses. Are you still in touch with anyone you met on our courses?
Yes! We still have a WhatsApp group and it has been so exciting to see other members of the cohort go on to receive publishing deals too.
In your book, you share experiences from over 20 years as a patient. How did you balance the emotional weight of these stories with the humour that permeates the narrative?
When most people picture being in hospital, they picture needles, medications and procedures but that’s just surface-level stuff. At its core, being a patient is like being dropped in a social experiment you never signed up for. You may be in for 24 hours. You may be in for a month but one thing I can guarantee is that you’ll be exposed to life and human beings as you’ve never seen them before.
Be Patient shines a bright hospital strip light onto humans at their worst (cue Jean: ‘my shit was ginger this morning’) or best, depending on how you look at it. With that comes raw emotion, but also a particular dark humour that we cling on to in challenging times.
Initially, my Be Patient book proposal was more a series of humorous vignettes; scenes I’d observed in wards and waiting rooms. My agent made me realise that in order to truly reflect the patient experience, I needed to ask myself how I really felt at the various stages. I needed to pause on those difficult emotions and give them space to be expressed.
The narrative now follows the rollercoaster that is patient life; we jump between shock, heartbreak, laughter and tears. Sometimes these are within the same scene or even the same moment because that is the reality.
Be Patient offers a unique perspective on life behind the hospital curtain. What challenges did you face in writing about such a personal and potentially difficult subject, and how did you overcome them?
For many years I tried to keep my illness hidden, determined to be seen as ‘Tilly,' not ‘Tilly the patient’ but in 2022 after three months in a London hospital I was being discharged with no diagnosis on ‘comfort care.'
At my most desperate, I decided I had nothing to lose by posting on my Instagram @thattillyrose and asking the world for ideas. The world answered. Medics, nurses, PhD students, professors and patients from all over the world got in touch with test suggestions, diagnoses ideas and treatment options. This led to the most unbelievable outcome, showing me the power of social media for social good.
This ultimately led to my publishing deal for Be Patient. Opening up at my most vulnerable allowed me to see how, far from being alone, billions of people are having to navigate patient life and everyone has a tale to tell.
I’ve gone from the girl who didn’t want to tell her closest friends she was ill, to now sharing my story with the world in a book. The process of writing Be Patient has turned out to be really cathartic for me but I also have realised this story is so much bigger than just me. We will all be patients at some point in our lives. Be Patient is everyone’s story.
It has become my ‘something good out of something bad’ and part of my wider mission to impact patient care.
As someone who has been through such extensive medical treatment, do you think storytelling – specifically memoir – can help others process their own difficult experiences?
Absolutely! Again and again I’ve found myself in hospital beds, listening to medical memoirs and asking myself, ‘Tilly why do you keep immersing yourself in this world you so want to escape?’ I realise it’s because these true life stories are relatable to my life at that point in time; they encompass the emotions I’m feeling. These memoirs give a kind of acknowledgement that in essence I think we’re all searching for.
I share ‘chapters’ on my life as a patient on Instagram @thattillyrose and have had so many messages from followers saying I’m validating their daily reality. I always say had I just shared my medical developments in an official document no one would have read it. It is the human story, the emotion, the absurdities, the eclectic mix of characters, my descriptions of my mum, dad, boyfriend and auntie (my team as they have become known), our dialogue, our interactions with staff and other patients, this is what is engaging people.
Be Patient takes the reader back to the beginning before I started my Instagram and tells the story of my 20 years as a medical mystery, inspired by my diaries along the way. Being a medical mystery means I’ve experienced every corner of the healthcare system and become the expert no one wants to be – the expert patient. My aim with Be Patient is to cover the entire patient experience and acknowledge the human beings at the centre of our healthcare system.
What authors do you always reach for? Did any books help inspire you on your writing journey?
I actually read Adam Kay’s This is Going to Hurt when I was stuck in hospital alone for a month during COVID. He was writing about a system I knew so much about. I found it so relatable. I instantly thought, ‘it does hurt. It hurts a lot. There has to be a patient reply to this!’
I’m now so excited by Waterstone’s recent review of Be Patient:
‘Doing for hospital patients what Adam Kay's This is Going to Hurt did for doctors.’
Growing up, when my health was deteriorating and everything was beyond my control, Virginia Woolf’s A Room of One’s Own was also a defining text in my journey; the concept that a woman needed ‘a room of her own’ to write fiction really spoke to me. Reading and writing were the two things I could do from the sofa and hospital bed.
Over the years, as a family we’ve found words to be a huge comfort and have developed a family game with Matt Haig’s The Comfort Book and Donna Ashworth’s Growing Brave poetry. Someone holds one of the books and flicks from back to front. The other person closes their eyes and says ‘stop’ when it feels right. Then they read the page it lands on. The words always have a way of carrying just the right message for that specific person at that moment in time. I cannot get over that Donna Ashworth has now endorsed Be Patient. To have her beautiful quote on the front of my book is unreal!
What are you most excited for readers to take away from Be Patient? Is there a particular takeaway or message you’re hoping to leave them with?
I think patient life is something which is yet to be truly acknowledged and I hope when reading Be Patient people see that whilst my story may seem exceptional, patient life is something that will affect each and everyone of us. Whether we are fighting for ourselves or our loved ones, it is something we should all be invested in.
Be Patient exposes a system designed to care that puts restrictions on the very nature of that care but along the way, we ultimately see it is the people who shape the patient experience; from Mrs Sarma the cleaner who makes my mum a daily cup of tea, to Maverick doctor who stays late at night researching my case, to my patient pal Abebi sharing wise words at my bedside, to baked goods arriving on the wards from loving friends and family, this is a story about both momentous decisions but also small acts of kindness. It’s also full of patient survival tips on how to get through or support any patients in your life.
Be Patient shows the human side of life behind the hospital curtain and it is part of my mission to impact change. It is the patients who see and more importantly feel what goes on in our hospital wards. The dream is for the health secretary to read it too!
On a personal level, Be Patient is a story of courage and a story of hope. At the core of the narrative is my mum’s phrase, ‘giving up is never an option.'
Be Patient shows that when we are at our most broken, the little things end up meaning more. We savour seeing the blue sky, walking through a lush green field, sipping on a frothy coffee and laughing with friends. These small wins are moments that are always worth holding on for.
I hope people will see Be Patient as a book they can gift to any patients in their lives, giving them the acknowledgement and determination to keep fighting.
Finally, what’s next for your writing journey?
Well, a lot has happened on my journey since I finished writing Be Patient. My epilogue touches on this but I feel there could be a whole new book detailing how the next part of this extraordinary journey has continued to unfold.
Get your hands on a copy of Be Patient.
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