Reader Amelia writes about the challenge of living with a serious health condition…
Amelia says:
I have what is called an 'invisible illness' - it is Ehlers Danlos Syndrome, a rare genetic disease. The type of EDS I have inherited is called Classical EDS and affects one in 20,000-50,000 people. The disease means I cannot do any kind of contact sports because my joints dislocate, my skin is really stretchy and takes twelve times longer to heal than the skin of most people, and I have to endure pretty much constant joint pain. The upside of this is that I pretty much always have my head in a book!
I have routine physio and heart scans, and I have to take painkillers every day, but I don't really feel angry or resentful about the EDS. The worst time was when I couldn't sleep for several weeks because of it, but mostly I just accept that this is the way things are for me. I have taught myself to stand up to people who think I'm a freak, but most of my friends seem to take it in their stride. Sometimes, funny though it sounds, they totally forget! I have a friend with EDS, but he has not been out of hospital for a long time now.
The thing is, in some ways this illness has made me a better person. It has made me mentally stronger, because you have to be strong to cope. My advice to anyone out there who is going through health issues is to stay as positive as you can and keep going. It may seem hard right now, but there are always lots of things to look forward to.
Cathy says:
I am so amazed at Amelia's courage and positivity... what a girl! I first met her a few years ago at Hay Festival, and was delighted when she agreed to write about EDS for DREAMCATCHER. Have YOU ever had to cope with illness or disability? COMMENT BELOW to have your say!
I have what is called an 'invisible illness' - it is Ehlers Danlos Syndrome, a rare genetic disease. The type of EDS I have inherited is called Classical EDS and affects one in 20,000-50,000 people. The disease means I cannot do any kind of contact sports because my joints dislocate, my skin is really stretchy and takes twelve times longer to heal than the skin of most people, and I have to endure pretty much constant joint pain. The upside of this is that I pretty much always have my head in a book!
I have routine physio and heart scans, and I have to take painkillers every day, but I don't really feel angry or resentful about the EDS. The worst time was when I couldn't sleep for several weeks because of it, but mostly I just accept that this is the way things are for me. I have taught myself to stand up to people who think I'm a freak, but most of my friends seem to take it in their stride. Sometimes, funny though it sounds, they totally forget! I have a friend with EDS, but he has not been out of hospital for a long time now.
The thing is, in some ways this illness has made me a better person. It has made me mentally stronger, because you have to be strong to cope. My advice to anyone out there who is going through health issues is to stay as positive as you can and keep going. It may seem hard right now, but there are always lots of things to look forward to.
Cathy says:
I am so amazed at Amelia's courage and positivity... what a girl! I first met her a few years ago at Hay Festival, and was delighted when she agreed to write about EDS for DREAMCATCHER. Have YOU ever had to cope with illness or disability? COMMENT BELOW to have your say!
That has to be tough on anyone, let alone going through it all at such a young age. I'm currently waiting on test results for Multiple Sclerosis so I can sympathise with the daily pain and somedays just not being able to get out of bed. You just have to pick yourself up and try not let it control you.
ReplyDeleteWow! I also have EDS so this was slightly surreal. It has taken me so long to get any answers, my local hospital are struggling to know what to do with me now. But I love the positivity. Also I'm 18 and have suffered with this most of my life and find it amazing that someone so young has such a positive outlook! Well done Amelia!
ReplyDeleteI know Amelia well and I jut wanted to say how brave she has been sharing her story! She has an amazing personality and it will take her far in life... She will be so so happy about having this published as she loves Cathy and her work! Keep smiling Amelia so many people are here for you when you need them :) from anonymous girl xxx
ReplyDeleteIm very amazed!I have a sister with a very complex and rare disease too and you have really inspired us to be positive!Thank you!
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