‘I think I’m going to die.’ My body was shutting down. If I closed my eyes, they wouldn’t open again.’: Chronic illness warrior battling Ehlers-Danlos Syndrome says ‘hope keeps us alive’

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“When people ask me about my story, I quite often don’t even know where to start. I guess I could start by telling you who I am… I am Jess, I’m 23 years old, and I live in the North-East of England. I am a daughter, sister, girlfriend, niece, cousin, and friend. I am a cheerleader and a dancer, I am a qualified pediatric nurse. I am a do-er, a dreamer, a believer, and an organized weirdo. I am a person that is known for her smile and I’m a zebra… a medical mystery, a girl no doctors can understand because her body never does what the textbooks say. I truly go against that well-known phrase doctors get taught in medical school: ‘When you hear hoofbeats, think horses, not zebras.’ I am that zebra and this is the story of how I earned my stripes.

Courtesy of Jess Hall

I spent years of my childhood and adolescent years searching for answers as to what was wrong with my body, which in many ways now, looking back, was never ever normal. When I eventually found some of those answers, they usually just led to more questions. No one expects to be thrown into the world of chronic illness, but as a person with over 12 different diagnosed chronic conditions, I can tell you it has changed both my perspective and path in life. Since I was a little girl, I have always been a bit different, but my first signs of being ‘different’ weren’t always seen as an illness: always bendy, always bruised, always clumsy, always walking and running ‘funny’ and struggling with any long-distance. Looking back, I used to feel like my legs were turning to lead and my hips were sliding around their sockets just walking around a shopping center. I just didn’t ever tell anyone because I thought that was how everyone felt, I thought it was normal.

Throughout my childhood, problems with my bladder started to become more apparent. I spent years in and out of children’s hospitals searching for answers but never really got very far, and it was a frustration like no other. But little did I know, things would progress at such a rate by the age of 23 years, I’d have looked death in the face more than once and learned lessons no teenager or young adult should have to.

Courtesy of Jess Hall

Things really started to worsen for me when I was a teenager. Things started to go wrong in more ways than one; fatigue, joint pain, cardiac issues, problems with my immune system, increasing gastrointestinal problems, the list just grew and grew. I vividly remember countless trips to accident and emergency, outpatient appointments, and inpatient stays, all with little answers. My life became a constant cycle of trying to be believed, having everything blamed on anxiety was not easy, all while trying to maintain a semi-normal life doing exams and extracurricular activities. I remember one night I went into hospital screaming with how intense the pain was and the staff took my parents out of the room to ask them if they thought I was pretending to be ill for attention. They obviously said no, and I could not and still cannot believe the number of additional battles you face, as though the illnesses themselves are not enough! I thought once I was diagnosed, all this would change.

Courtesy of Jess Hall

Eventually, after over 12 years of searching for answers, I got my diagnosis of Ehlers Danlos Syndrome (EDS), a genetic connective tissue disease that causes a disorder of collagen. Because collagen is in everything, this condition affects pretty much everything. The type I was diagnosed with back then was known as Type 3 EDS, now referred to as Hypermobile Ehlers Danlos Syndrome (hEDS). It would take this full article for me to explain the myriad of symptoms this illness causes me and all the comorbidities that go with it. Instead, I’m going to give you a raw insight into the effect these conditions have on me as a person. Sometimes I wish I’d never got my diagnosis because people with EDS and its associated conditions face so many battles with simply being believed. We are accused of making things up and professionals often attribute all the symptoms to mental illness.

Courtesy of Jess Hall

By the time I reached 21, my diagnosis list had become more complex and my gastrointestinal symptoms basically unmanageable. I went through every feeding tube there is to have and I ended up on Total Parenteral Nutrition known as TPN (fed through a large vein in my chest). I lived in a hospital practically consistently for 2 years straight. No one can underestimate the effect this has on a person. I was told aged 21 I was in intestinal failure, a scary concept, but ultimately one that taught me never to take simple things, like eating and drinking for granted or living at home instead of the hospital, again. However, I remember this time in my life being ironically one of the most hopeful periods of my journey. I felt like a chapter of my life had sort of closed and I wouldn’t have to struggle with my nutrition anymore- even though that couldn’t have been further from the truth. I was at some peace for a little while and I’m thankful for that.

I find it funny how things never turn out how we expect them to, no matter how much we plan. This is even more true when you’re chronically ill. TPN as a form of treatment came with some extremely scary and at times, life-threatening risks. It caused me to have multiple episodes of sepsis. Anyone who has ever experienced Sepsis will know just how scary it is. My first ever sepsis episode was the most vivid. I remember quite literally feeling like I was going to die, like my body was shutting down and there was nothing I could do about it. I thought at any minute, I would shut my eyes and not open them again. There’s no fear like it. Again, the lack of understanding about my conditions from healthcare professionals led to me not being believed and people telling me my illness was a result of anxiety, when in fact I had a life-threatening infection pulsing through my veins.

Courtesy of Jess Hall

These episodes of sepsis combined with some quite severe allergic reactions meant I ultimately came off TPN. The situation itself was so complex but the way this was done was one of the most traumatic experiences of my life. I was let down by many of the professionals I trusted on so many levels and this has led to unspeakable levels of trauma, which still follow me around to this. After this happened, my nutritional status was so poor, I went back on to tube feeds, but something incredible came from this extremely traumatic event. Here we are again with chronic illness and its life lessons! What happened truly restored my faith in humanity. In a time where it became really clear I needed some seriously specialized private help, I set up a fundraising page. I am still in absolute shock about the fact my fundraising total to date is just over $8,000 with money still coming in! This is another huge life lesson that being chronically ill has taught me: to look for the good. It’s not always obvious (although sometimes it can be) and life has a funny way of creating diamonds out of dirt if you look hard enough.

Courtesy of Jess Hall

My life now is still a daily struggle, with getting through a day being a challenge in itself at times. Keeping a body alive that literally can’t do the most basic of functions at all is no mean feat. No one in my immediate family suffers from the same illnesses I have, although it’s likely my EDS comes from my mother, who is asymptomatically hypermobile. That is a challenge in itself. My illness has taken so much away from me, a life I would have had if it had not been so interrupted by chronic illness. Being a disabled young person can be a very isolating experience. I’ve been lucky to make friends who also have the same conditions as me, but when most of the world lives in a universe where illness is something that comes and goes just as quickly, you don’t realize how poorly the world is set up for people, and particularly young people with disabilities. But despite this, I have tried my utmost to make the most out of the different opportunities I have been given.

Courtesy of Jess Hall

I cannot talk about my journey without talking about my family. Every single one of them have supported me through the darkest days, and I would not be here without them picking me up from the floor (both physically and mentally) multiple times throughout my life. My incredible mom was at the center of that universe and still is to this day. She is my biggest advocate and my best friend. Chronic illness, I think, has made that stronger, but has also caused its fair share of strain on our relationship. There is something so special though about knowing the whole world could walk away and she’d still be there, still on my team and still fighting my battles. She’s doesn’t have chronic illnesses, neither do my dad or my younger brother, but I sometimes feel guilty I dragged all of them into a battle that is ultimately mine. It wasn’t theirs to fight, and by default, their lives are changed forever. I can’t quite verbalize how that feels and don’t think I ever will. I just feel so lucky for the support I’ve had, and the fact no one walked away when many would have. They have always encouraged me to still reach for the stars and it’s worked because some of the things I have managed to achieve with my illnesses are true miracles and wouldn’t have been made possible without their support.

Courtesy of Jess Hall

I have tried my best to try and continue being a person outside my illness. I continued cheerleading and dancing, representing England at the Cheerleading World Championships in 2018, along with many other things I’ve done from being small I would say made me into who I am without my conditions. Ironically though, it’s my illnesses that led me to the career I’m now in. Anyone at all who knows me will vouch for the fact I mention how much I love my job every single day but being a children’s nurse wasn’t always the plan. I always tried my hardest to get the qualifications I wanted in an attempt to spite my illnesses, so I battled through GCSE’s and then A-Levels before setting off on a Psychology degree at Durham University. I realized as soon as I got there my heart lay somewhere else. My experiences with my illnesses had shaped me into a different person to the girl I thought I was.

Courtesy of Jess Hall

The decision to leave was difficult but ultimately led me to my dream. I have always had a passion for working with children so I decided to couple it with my understanding of the healthcare world. I wanted to use all my pain, my hours spent in the hospital, and my understanding of what it meant to be chronically ill and use it for something good. I embarked on a journey to become a Children’s Nurse, which is probably the single-handed best decision I have ever made. My health took a major downward turn when I started my degree and sometimes, I look back and I’m amazed I actually made it. I spent so long stressed I would end up too sick to qualify.

I remember on one of my particularly long admissions, I truly thought my body had won and destroyed my dream. It was hanging on by a thread and I spent hours on the phone trying to convince people I wasn’t too sick to be there. I came up against my fair share of barriers about pretty much everything, finding a way to work as a student nurse with feeding tubes, doing assignments from the hospital, trying to get to university while admitted to hospital, and that was just the physical aspect, let alone any of the mental impact. But there was a resolve inside me that was so strong. I felt like I owed it to all the kids I would one day look after, those kids who were like me in that moment. I wanted to be able to tell those families there is hope despite illness, and they can dare to hope they would still have a future, even when it didn’t look that way.

Courtesy of Jess Hall

There have been some really special moments where I realized I was exactly where I was meant to be. The day I had as a first-year student where a little girl who was tube fed told me ‘she was going to be a nurse who had a tube just like me’ or the day I got my dissertation result while so unwell in hospital but found out I had received a First-Class Honors. I realized my hard work paid off. Those days getting disconnected from an infusion before getting a taxi from the hospital to get to university for my lectures, and those days completing assignments in the one good hour I would get in between mind numbing pain relief. I did that because I knew I had to use my damage for good. Somewhere in the mess, I found myself in I could use it for good. That to me is something so pure and I am still in awe I get to now do this as my job.

I qualified as a Paediatric Nurse in February 2020, with the support of my family, friends, and an incredible university, and came out with a First-Class Honors Degree in Children’s Nursing. I am now working as a qualified nurse and I don’t have any words to describe how lucky I feel. I went to my graduation ball whilst I was a hospital inpatient recovering from sepsis, and that pretty much sums up my journey, my illness, and the rest of the ‘real’ world juxtaposed against each other like some kind of weird joke, but that was my normal and somehow, we made it work. Working as a nurse with an illness is difficult in itself, managing my own health needs takes up a lot of time, and requires a lot of juggling, but that is a journey in itself I’m learning to navigate. My aim is to do my job and do it well, utilizing all my personal experiences and my training to give children, young people, and their families a care experience I’d want to have myself.

Courtesy of Jess Hall

I’d love to end with some kind of really positive message, but I sometimes feel false positivity helps no one, so instead, I’ll just say this. Living with a chronic illness is tough, and some days are about sleeping, crying, and being mad at the world, while other days are about standing up and doing what you want to do despite your illness. I’ve learned, ultimately, if you get up every day and you give it your absolute best shot, work with the body you have, you can look back and be proud of what you’ve achieved, no matter how small. Everyone’s journey with a chronic illness is different. Some people might tell me I was crazy for pushing so hard to get my education when my health was so poor, but I knew that decision was right for me.

All I know is hope comes in many different formats, but it’s probably one of the single most important things that keep us humans going. It’s a language everyone can speak in their own way. So hope for tomorrow, hope for a better day, hope for peace, hope for a cure, hope for a better night’s sleep, hope for the future, hope for anything that brings you happiness. Hope is a powerful drug, keep it alive and it keeps you alive.”

Courtesy of Jess Hall

This story was submitted to Love What Matters by Jess Hall from Newcastle-upon-Tyne, England, United Kingdom. You can follow her journey on Instagram. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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