My EDS Challenge Day 29- What awareness means to me in Hypermobile Life

I am taking part in #MyEDSChallenge and #MyHSDChallenge with the Ehlers Danlos Society. Since May is EDS awareness month, every day I will be sharing something about myself and my EDS journey to drive further awareness and community.

Day 29- What awareness means to me

First and most importantly, tell your story! The more people we have telling their stories, the more other people will come forward. The more people talking the more people that will want to get involved in the cause. Soon we will find that Ehlers Danlos and Hypermobility spectrum is not rare at all and it is okay to be not okay. This keeps the hope alive that help is coming.

Awareness also involves educating able bodies people. Most people want to help in some way. It’s very important to put a name to this suffering. Being active online and catering content to able bodied people, speaking in lamens terms so that everyone understands whats going on is important.

Lastly, advocating for yourself in small ways does good for raising awareness long term. When someone makes a comment that is inaccurate, correct them. Point out small ableism even if people mean well. If your boundaries are being stepped on in terms of lack of accommodations, people pressuring you to take part in things that your body cant handle, say something. These are opportunities for education.