Ehlers Danlos Syndrome - Emily's Journey Since Diagnosis
Meet Emily, an extraordinary young woman who lives with hypermobile Ehlers-Danlos Syndrome (hEDS) alongside several other chronic illnesses. Despite the challenges posed by her medical conditions, Emily's determination to navigate her twenties with purpose and determination haven't wavered.
Today, Emily uses her online platforms to share her journey, hoping to inspire and support other young people facing chronic illnesses, navigating the hardships and stigmas that come with it.
Please start by telling us a bit about yourself…
Hello! I'm Emily, and I'm 26 years old. I live in North East England. I love dogs, music and art and I have a degree in sports rehabilitation.
I was diagnosed with hypermobile Ehlers-Danlos Syndrome (hEDS) in 2020 and since developed various other conditions including hip dysplasia, gastroparesis, and intestinal dysmotility, which has now resulted in tube feeding. Overall, I manage around nine chronic illnesses, though to be honest, I've lost track! Doctors often describe my situation as "medically complex."
Could you talk us through your diagnosis and experience living with the initial symptoms of hypermobility?
I have been living with my symptoms since childhood, often dismissed as "growing pains," which led me to believe that everyone felt the same way. Over time, my condition worsened to the point where I could no longer engage in the activities I loved. A lifelong dream to be an engineering officer in the Royal Navy and consequent applications led to medical examinations as part of the process. It was during these exams doctors identified hypermobility, kidney issues, hip problems, and Raynaud's syndrome, ultimately classifying me as PMU (Permanently Medically Unfit).
This was the first major setback I faced due to my health, and it shattered me mentally. I struggled to find purpose and felt like a burden to those around me. For a long time, I relied heavily on others for even the simplest tasks. Initially I despised what had happened to me and sadly resented life.
How has your physical and mental health changed over the years?
My physical health has been an ongoing battle, but my mental health has improved. After years of living with my diagnosis' I have learned to appreciate my body, despite its challenges, it has carried me through life quite well. I now focus on small victories and set new, achievable goals. Now, my mental health is probably the strongest it has ever been! ✨ And on the tough days, I just hear Dory from Finding Nemo saying "just keep swimming."
Having my small circle of people, both friends and family to keep me going through the good and bad days has also helped enormously. When you're navigating serious health hurdles you need people there to laugh with you, to listen to you when your angry, to hug you when your sad - that really is invaluable, because chronic illness is a rollercoaster, and you shouldn't try and deal with it alone.
As well as a great group of people, I have a huge love for dogs. My dog Henry is one of my best friends, he just knows when something is wrong, and is always there for a cuddle whenever I need it. Aside from my support system, finding a hobby that I was able to learn and enjoy has kept me sane. When I was no longer able to spend every minute at the gym, I had to find a new skill that wasn’t going to put my body at risk, so I leant into my creative side and found a huge love for art. I think it's essential to still engage in activities you enjoy, and if you can't do what you could do before, find something new to learn and to love, because everyone needs an activity that brings them joy (plus it helps with long stints in a hospital bed!)
How easy did you find it building friendships whilst learning to navigate chronic illnesses?
Being at Uni while battling so severely with my health definitely impacted how I built friendships. I found I couldn’t relate to a lot people my age because my struggles were based around pain and hospital appointments - not exactly a great conversation starter...
I also found myself missing out on a lot of things; I just wasn’t well enough to go to parties, events, or even hang out with people outside of university. Going to the lectures zapped every bit of energy I had; I just couldn’t find it in myself to add extra load onto my day. However, I did find my people; it just took a little more time. And those people became a huge part of my life that I couldn’t have lived without. It wasn’t about having loads of friends, just the right ones—and I feel super blessed that I found them.
And what was it like managing your education and your disabilities?
I started my degree when I was 21 which is also when I was finally diagnosed with EDS. I’m so pleased to say that even through the worst of my symptoms, I still managed to complete a BSc in sports rehabilitation, and I graduated when I was 24. There were plenty of moments when I didn’t think I was going to make it to the end of my course. I missed a lot of my education because of health problems, had to resit several exams and there was even practical elements that weren’t safe for me to complete. With my health being so up and down, I spent a lot of time trying to write assessments, and even my dissertation, while in and out of the hospital—which was far from ideal. Navigating a degree while living with chronic illnesses was honestly one of the most challenging experiences in my life to date, BUT I am so glad I persevered with it and managed to graduate with an upper second-class 2:1. I learned that with consistency and belief in yourself, you can achieve so much more than feels possible in the hard moments.
As well as Uni and getting your diagnosis at 21, you also had to learn to live with a mobility aid, how did you find that transition?
Yes, so my diagnosis also came with the advice to start using a walking stick. As I didn’t know much about mobility aids or have anyone around me that used them, I just bought my first stick of Amazon – this turned out to be a disaster! It caused blisters on my hand, it was loud, unstable, and I couldn't rely on it not to break, this meant I just spent more time inside because I didn’t feel safe walking outside. After a couple of years of struggling with feeling completely unstable and unsafe, I found Cool Crutches and invested in a walking stick that reignited my confidence in my mobility again.
I instantly noticed an improvement in my mobility; my hands no longer hurt, and I felt confident that I wouldn't trip over a curb. When my mobility declined further, I transitioned to crutches. This gave me more confidence to go out with my family and friends and not be concerned about uneven or wet surfaces. Investing in decent quality mobility aids was an integral part of my rehabilitation, both post-hip surgery and day-to-day with my Ehlers-Danlos Syndrome.
Before Cool Crutches, my opinion of mobility aids was mostly negative; they were painful, loud, and never felt stable. Now I’m very quick to recommend mobility aids because I found a brand I trust. I LOVE that Cool Crutches offer mobility aids for everyone! No matter your age, personality, or style, there will be a design for you. I was getting sick of being made to feel like because I was disabled I had to settle for GREY. My current favourite design is Magic Mushroom because it reminds me of my brother, and he is my absolute rock 🍄
I find living with multiple chronic illnesses and being so young incredibly isolating at times, so I choose to talk openly to my online community about my struggles, symptoms, products I use and love and everything in between, in hope that my experiences can help other people suffering with chronic illnesses 💚.
Do you feel you face any stigma due to your age and your disability? How do you think we could improve this for other disabled people facing the same?
There is unfortunately so much stigma surrounding disability as a young person. I experience this in many areas of my life especially when using mobility aids, my disabled parking badge and going into a public disabled toilet. I feel because I’m young and for the most part my disability is 'invisible', it’s very easy for people to make incorrect assumptions, but I've learnt to remember that my actions, aren't anyone else's concern.
What I would love to see more of is education in schools around disability, hidden disability, chronic illness and the fact that not everything is visible. I feel if younger people had a better understanding of the array of health problems that exist, there would be less judgement. The disabled community is a real life-saver when you are living with chronic illness, it's a supportive, understanding and loving space where you can exist and feel completely safe and accepted, so I wish this kindness stretched to the wider community 💖.
What are the top 3 things you need day-to-day to manage life with a chronic illness?
- Cool Crutches of course! I can enjoy mobility without fear or pain
- Tubie tape for my feeding tubes. It makes them look a lot less medical and much prettier
- A dog. They can sniff out when something is going to happen, even if they aren’t trained (like mine)
Have you got anything exciting in the pipeline that you'd like to share with us?
It's going to take me some time, but I'm currently working on a project where I draw chronic illness. My goal is to create art that helps those who don't live with chronic illness understand what it's like to experience these challenges!If you'd like to follow Emily and her journey through life with chronic illness, then please do give her pages a follow on Instagram and TikTok!
If you'd like to see all of the designs Emily owns plus the ones she's got her eye on next, you can >> here. We also recommend giving these other articles a read if you enjoyed this one:
