What does your condition mean to you?

Suffering from an invisible illness can be extremely isolating. Knowing there are others out there the same who are fighting similar battles can be a great deal of comfort. This is something that people mention again and again on forums, Facebook groups, through charities, Twitter and on other blogs that I read. It is a recurring theme. It's almost like a daisy chain, precariously joined together, people support one another and the chain keeps getting bigger. It needs to continue getting bigger for things to improve on other levels, like medicine, doctors and professional support.

Everyone handles their illness differently. While symptoms may be the same, no two people are completely identical in the way they live with chronic illness. The words below are from three different people, from three different parts of the world. They have given three key words and a short summary of how they feel about their condition. They speak different languages and live different lives, but they are united in one thing- fighting their condition. 

Lacey:

 Progressive, unknown, annoying

My hypermobility pain has increased significantly over the last two years and I was misdiagnosed and therefore mistreated for eight years before getting the correct diagnosis. I am still being bounced around different hospital departments trying to get to a specialist in order to manage the condition. I try to manage it as best I can and my current top tip is sleeping with a pillow in front of my stomach like a pregnant woman to prevent a recurring trapped nerve in my spine!

Mendy:

party tricks, pain, planning

I’m always in pain, always tired and although the doctors told me it would get better with age, I find that my joints keep popping out of my sockets more. With every activity I want to do I need to plan, either take more painkillers or have more sleep, have more recovery and say no to things more often. This is my life. I’m not sad about it. I was born with hypermobility. It’s only a shame that this is something not visible from the outside. I've lost friends over the years who haven't understood why I wasn’t able to go to birthdays or social gatherings. In my book, those aren’t friends. I live my life to the fullest, do whatever I can. I work, have my own house, lovely friends, nice hobbies and I’m happy. I’m not my hypermobility, I am Mendy with the funny joints.

Jay:

Falling apart inside

EDS has single-handedly taken away so much from my life, but at the same time gifted me an abundance of maturity and understanding at a very young age. Having such a dramatic, hidden change to your life can obviously be dizzying and the lack of research and understanding for such a difficult condition to live with is extremely frustrating; but what this means is the people I've met and spoken to with EDS are some of the most courageous and resilient people you could imagine. They have for the most part become their own doctors and created a community of people who know how hard it is to live with EDS who support each other tremendously. And for that I am grateful.

I would really like to receive more of these short pieces from people who suffer invisible illnesses and live with chronic pain. If you want to contribute to a future post please email laurenrellis010@gmail.com