My story – Lois
Learning that you have EDS can be a tough pill to swallow. Especially as a young person. For many, it can come as a relief that you’ve finally figured out where all of your pain and fatigue has come from. However, it’s the afterwards which can be the most painful, not knowing how to deal with the pain, as well as wondering how the people around you will react.
EDS is a very unknown condition, so when I told my school, I was pleasantly surprised that they told me they’d support me, and understood if I wasn’t in as much as I wanted to be. Over time, it became clear to me that they actually didn’t understand as much as I was led to believe, and my experiences were completely disregarded. Emails began pouring in telling me to get over it and come into school. This disregard for the condition that I made completely clear to them made me feel isolated and completely alone, which is the sad reality for many with EDS, young or not.
Overtime, I began to understand my condition a lot more, and knew certain things that would trigger the pain as I familiarised myself with my condition. It does get better, but then again it can get worse, and at the premise of this condition, it is vital to understand and pace your body, as you are different, and you should take care of yourself for your sake, never for anyone else’s. If you need a break, take a break.
If you need to rest, go rest. And if you don’t feel physically up to something, don’t do it. Pressuring yourself to live your life the way others do can take a massive physical, as well as mental toll. Being different is nothing to be ashamed of, and it will take time to accept that.