Having and invisible illness isn't easy and people can be cruel; most of the time it's because they don't understand and are too afraid to ask questions. I'm always willing to talk about my conditions and educate anyone who is open to learning.
My disability is only one part of me and although I have to plan and pace every move I make I know it has made me the strong, determined person I am today. I’d love to spend a day without pain but I have accepted that this is my life and I wouldn’t be me without my conditions. Share your story with #SufferingTheSilence
Here's what my wonderful friend, Natalie had to say about her conditions...
I've been through a lot in the past 5 years. Having the conditions I have isn't always easy. It's a pain in the arse sometimes. I don't always have control over my own body, I have fits, anxiety, spasms, pain, numbness, dislocations & subluxations. I used to find it really hard & scary to deal with and sometimes I still do. Some people just simply didn't understand, including me for a long time, because I looked 'normal' to them, some even used my illness to try & make themselves look like better people. You can't change the naivety of people in this world. You've just gotta be you.
I used to find it embarrassing & felt like people would judge me if I said I couldn't do something or needed help. And I hated burdening people with my problems but recently I've come to accept & embrace my illness. It's ultimately what's made me who I am. I wouldn't have met some incredible people who I now get to call friends. I wouldn't have learnt about the strength & voice I have to help, support & educate other people & myself. I am unique but I'm not alone. #sufferingthesilence JOIN THE MOVEMENT
And my other incredible friend, Emma...
I was diagnosed around 10 years ago. I used to run competatively, trampoline and walk long distances. I got to the point where I could hardly walk because my joints hurt so much and I had to give up all my sports. I have shoulder dislocations and pain in most of my joints all the time. This has really sucked but I've met some of the most amazing people through this condition and have learnt so much about my own body and how to try and gain control of my muscles. It is not all in my head but because it is an invisible illness, you will probably not see me struggle with it. It is ok to talk about, to ask questions and try to understand. It's something I deal with every day but it is not who I am. To make life just a bit easier for EDS sufferers, we need to raise awareness.
Spoonies, get involved.