More than a patient

Written by Ellie Howe.

There was a point in my life, not too long ago, where I believed I would never be anything more than a patient.

At fifteen, my entire world was turned upside down when I suddenly found myself unable to eat or drink without experiencing relentless pain, nausea, vomiting, and diarrhoea. But when I turned to my local GP and hospital for help, I was repeatedly dismissed as anorexic or dramatic.  

“People your age can fight for our country.” I remember one consultant telling me, “Go home and man-up.”  

At first, I wondered if I was being treated this way because I’d been stereotyped due to my age. But as I continued to navigate the system I realised that this is something women often experience within our healthcare system, regardless of age, ethnicity, or background.  

The consequences of this can be devastating. In my case, it wasn’t until my health reached a life-threatening point that I was finally referred to a specialist hospital, where I was diagnosed with a condition called Gastroparesis. The muscles in my digestive tract had become so paralysed that food could no longer pass through my system as it should and, consequently, my body could no longer process food in the way it needed to survive. I was immediately admitted as an inpatient, fitted with a Hickman line, and started on a form of IV nutrition called TPN (Total Parenteral Nutrition). These were the answers I had fought so hard for, and I truly believed that with the right team now caring for me, I would finally get my life back on track again. Unfortunately, what I didn’t yet realise is that although TPN was keeping me alive, there was no cure or dedicated treatment for my illness.  

“There is nothing more we can do,” a registrar explained to me gently at the end of a three-month admission, as he told me he was referring me to palliative care, “you are just going to have to accept that this is your life now”.  

At only 18 years old, to be told I had no hope or prospects for my future, was absolutely devastating.  

I was in our local hospice on my nineteenth birthday when my mum told me about a surgeon she had found through internet forums who had operated on many cases like mine. Desperate for anything that might help, and feeling as though I had nothing left to lose, we booked an appointment to see him. After reviewing my case, I was in disbelief when he told me that I was a candidate for surgery and, importantly, that he believed it could give me my life back. 

Although many of my other doctors advised me against the operation due to the risks involved, the glimmer of hope this surgeon had given me was something I couldn't shake. After years of being told there was nothing more that could be done, the possibility of being able to truly live again was something I knew I had to fight for. Out of the hundreds of drugs and treatments I had tried, it turned out that hope was the most potent and effective one of all. 

It has now been just over five years since I underwent that life-changing surgery and was given a second chance at life. The surgery gave me back the ability to eat and drink without pain, nausea, or sickness, and allowed me to come off TPN completely this past March, after seven years of relying on it to survive. As well as this, two years ago, I enrolled in an access course to finally complete my A-levels, an experience once taken from me, and this September I will be starting university to study English. 

Inspired by everything I had been through with my health, I also started a project called A Note of Hope. Over the past year, I have interviewed, written, and published more than forty stories from people living with chronic illnesses all over the world. Through these stories, I have tried not only to honour the challenges people have faced but also to celebrate the things that have brought them joy in their darkest moments, to offer hope to those who might be navigating similar challenges.  

Every day I receive messages and comments from people who resonate with the project. But recently, I received feedback from a member of the community that deeply resonated with me: 

"Ellie is doing such incredible work, making people feel heard when sometimes all they've been is ignored." 

As I reflected on the young girl I once was who so desperately wanted someone to listen, I felt overwhelmed with pride and gratitude to now be someone who can offer that to others.  

Everything I have been through has shaped me and made me deeply passionate about advocating for other patients, through A Note of Hope and working with The Patient’s Association. Today, I am proud to say that I am a patient, but also an advocate who is determined to use their experience to help drive change. 

Ellie is speaking on the panel of our Patient power: energising the 10-Year Health Plan through patient partnership webinar, during Patient Partnership Week 2025. Find out more and book your free place.