MARY’S STORY

I’m Mary, I’m 22 and I live in Wiltshire. I have Ehlers-Danlos syndrome (EDS), a connective tissue disorder that affects my body in a lot of different ways. My joints are fragile and dislocate easily, so I normally use crutches or a wheelchair to get around. It also affects things like my blood pressure control and how my stomach works, and I currently have a feeding tube.

I was diagnosed with EDS when I was 18, and outside of my family I didn’t know many other people with the condition. It was quite a lonely time and I massively struggled to be independent at university as my health deteriorated. Watching my friends thrive at student life whilst I was struggling to function was painful. Most people had never heard of EDS so I was constantly having to explain myself. It was during one of those explanations that someone said ‘that sounds just like my housemate, let me introduce you guys!’ and I met Sam, my first friend with EDS. Meeting someone who understood what it was like to live with this crazy condition was such a breath of fresh air. Constantly explaining everything was exhausting but with Sam I didn’t have to explain anything, she just got it!

I left university after just a year when I realised I needed to prioritise my health. Over the next few years, I came to connect with more people who shared my condition, meeting most of them through social media. Now I am fortunate enough to not only have a number of friends with EDS, but also friends with other chronic conditions who equally understand the challenges of life with a disability.

THE GOOD

One of the best parts of having other EDS pals is being able to celebrate each other’s achievements. Life with a chronic condition is undoubtedly hard, and often you have to fight harder to achieve the things you want.

A couple of years ago, I went on a rehabilitation course to learn new ways to work with my body and become more independent. One of my big goals was to be able to do my own washing – this may sound insignificant, but it was a big step for gaining my independence. I remember the first time I managed to do my washing without dislocating any joints, it felt amazing! I messaged and told some of my friends and they all celebrated with me, they understood how big a deal it was.

One of my big passions is climbing, and when I first tell people I climb they tend to look from my wheelchair to my feeding tube and give me a look of disbelief. But through this sport, I have met a wonderful community of other EDS climbers. We share hacks with each other on how we make climbing more accessible for us as well as celebrating each other’s personal victories. It’s like permanently having your very own cheerleading squad on standby, always ready to cheer you on.

THE BAD

Life doesn’t always go to plan, especially when you’re somewhat medically complicated. Having the support of other people around you who are managing chronic conditions is so important. You can rant and rave as much as you need to and they will always be there to listen, because they understand what it’s like.

My EDS friends are also an amazing source of knowledge. When you have a rare condition, you often come across professionals who know very little, if anything, about your illness. When you come across new symptoms or problems, it’s often down to you to play detective and figure out what’s going on. Having a group of people to turn to and ask, ‘is it just me?’ is a huge help. I’ve often found I will learn more about my condition from the experiences of others than from a professional’s textbook.

Although life with a rare disease is often challenging and occasionally lonely, I feel incredibly fortunate to have so many wonderful friends in my corner. So here is a shout-out to all those people – thank you for listening to me, supporting me, helping me, and loving me. You are all wonderful.

We might be rare, but we aren’t alone.

TO LEARN MORE ABOUT PEOPLE LIVING WITH RARE CONDITIONS, WATCH THE UK’S OFFICIAL RARE DISEASE DAY VIDEO. IF YOU WOULD LIKE SHARE YOUR OWN EXPERIENCES, PLEASE EMAIL [email protected].

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