'Doctors couldn't tell me what was wrong - social media finally gave me an answer'

For two decades Tilly Rose's life was spent in and out of . Having suffered a range of different symptoms, Tilly was passed from doctor to doctor as they attempted to figure out just exactly why she was so ill. But after being offered the opportunity to be discharged ‘comfort care’ during one particular hospital admission, Tilly turned to for answers in desperation – and soon the pieces of the jigsaw fell into place.

“Being ill is not a choice. I describe it as a raffle of the worst kind, and sadly, aged five, I had the unfortunate bad luck of winning a paper ticket in this raffle and ended up with 20 years of emergency admissions, major operations and gruelling treatments,” she tells .

“What came with it, as is the case for many patients who have ongoing illnesses, was a double life I was constantly having to navigate. I was so desperately trying to hold on to being Tilly, but I was being forced by this illness to enter another as Tilly the patient. All I wanted, and all I've ever dreamed of, was a kind of ordinary, 'normal' life that has again and again proved somewhat impossible over the last 20 years.”

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While Tilly's journey, she now knows, began when she was aged five, it wasn't until she was 10 that she became seriously ill after suffering a burst appendix. Just six years later, she had an emergency bowel resection that nobody could explain, while she also spent her teens in and out of hospital due to recurrent pneumonias.

“The worst bit was that nobody could explain why all these things were happening to my body,” she says. “It proved really challenging to navigate because every doctor was splitting my body into different body parts, but no one was looking holistically at the whole picture other than my amazing mum who was behind the scenes relentlessly researching.”

As she searched for answers to her questions, Tilly was forced to find ways to cope with her situation. As a distraction from her experience, she gave herself a focus and set her sights on something the lay beyond the various hospital walls she'd become accustomed to. As a result, when she was 10 years old while on a trip to Oxford with her family, she set her sights on attending the esteemed . Eight years later, she found herself studying in the grand halls she'd always longed to be in.

“I held on to that dream and I got in, but whilst I was at university I found out I'd been living with 13 years of undiagnosed active tuberculosis after drinking unpasteurised milk aged five. I had 18 months of treatment and after that I started to get my life back again. I finally had this 'normal' life that I always dreamed of,” Tilly recalls.

“Sadly it didn't stop there. Over the next 18 months, a vague array of symptoms started to develop and I went into my first adrenal crisis, which is a life-threatening medical emergency where your adrenal glands aren't producing cortisol. Without it you can go into a coma and you can die. I had a weird dichotomy of this horrible diagnosis, but also this massive sense of relief that I'd got an explanation for my symptoms. I was told, ‘Tilly, if you take your steroid medication, you can live a relatively normal life.’

“That sounded fantastic, but it didn't happen. As time went on, I was taking these steroids and they just weren't registering the way that they should have been. That then eventually culminated in an admission to a London hospital where I was very seriously ill and ended up living on an open ward for almost three months.”

It was during this hospital stay that Tilly began searching for answers elsewhere. Having spent three months on the ward without receiving an explanation for her symptoms, she began posting on about her life on the ward. In a moment of sheer despair, a post asking others for potential leads about her symptoms saw Tilly's account go viral.

“It's funny because when I was a teenager I absolutely hated the idea of being labelled as a patient. I just wanted to be known as Tilly. But during the London admission, when they said they were going to have to discharge me without a diagnosis on comfort care, I was in a really desperate situation. In a moment where there was really no hope I posted on my Instagram and I asked the world if they had any ideas,” she explains.

“The response was absolutely unbelievable. I got messages from professors, doctors, PhD students, patients and their families with test suggestions, diagnosis ideas, treatment options. We made this master list of all of the ideas which my mum then spent the next year working her way through. That led to my ultimate diagnosis, which was that I was born with hypermobile Ehlers-Danlos syndrome, and I headed to Germany where I received my diagnosis and had three life-saving surgeries that saved my life.”

Understandably after spending two decades searching for answers, Tilly’s diagnosis filled her with relief. Having been a 'medical mystery' for so long, hearing the doctor put the pieces of the puzzle had been a long time coming. “When the professor was scanning me and found out what it was, I almost screamed out loud. Finding out the reason for my symptoms was scary but there was hope that life could get better, so it was also a massive relief to finally have that explanation and to have that label,” she says.

“Medicine sadly relies on labels in order to give you treatments, in order to give your cure. Medicine is all based around test results, so actually having those results was life-changing.”

On the back of her experience, Tilly has written the book Be Patient. As well as documenting her desperate search for a diagnosis, the book showcases how Tilly’s resilience and hope shone in the darkest of times. “As much as it's terrible and traumatic and upsetting, there have been moments with friends where I'm sipping on a frothy coffee and looking at the blue sky. I guess it makes those moments even more special and even more meaningful,” she explains.

“Alongside that were also the small acts of kindness that came from staff or other patients in the hospital. People often focus on the big medical breakthroughs and the scientific advancements, but in between those times, it’s the people who actually keep you going – like the cleaner who made my mum a cup of tea every day or the humanist chaplain who would come to my bedside and make me tell her about the girl that existed outside the hospital window to try and kind of keep that girl and that spirit alive.”

With a diagnosis in hand, Tilly is looking forward to the next chapter of her life as she continues to raise awareness of patient care in her book and via social media. “It's been teamwork. It's been a slow process. It's kind of epitomised, Be Patient. They've been very patient and I've been very patient,” she says. “I hope now I can soon get that ordinary life that I've always just dreamed of having, which would be incredible.”

Be Patient, by Tilly Rose, published by Monoray, £20, www.octopusbooks.co.uk

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