I can only imagine how hard it must be for you, the friends and caretakers, to be there for us when you know in your heart that there is nothing you can do to make it better. So I want to tell you right now that you CAN make it better. You do. Just by being there. Just by reaching out, and making time and space for us in your lives and in your hearts. Just by saying, “I know I can never understand what you’re going through – but I believe you. And I love you. And I’m here.

I move my arm through the airLike I am dancing through timeand spaceLike a child discovering my working bodyFor the very first timeI smile and laughGiddy and delightedAt what once escaped my notice for 29 yearsHow wonderful would life beIf we could rediscover itWith each new sunrise?To awaken to ourselvesAnd witnessEvery breathEvery soundEvery sight, feeling, and movementAs the miracle it is?

I have found that the people whom society has deemed to be the weakest are inevitably the strongest.

Usually I take this opportunity to say something inspiring, about how my illness has changed me for the better and given me a clear purpose in life for both the work I do and the person I want to be. While all these things are true, the fact is that sometimes I'm in a physical state where I just don’t have it in me to be inspirational. And that’s all right – inspirational words are meaningless without the context of genuine human struggle.

Every EDS patient knows that one of the hardest parts of our day is the moment we open our eyes and waken into the reality of our bodies.

Every EDS patient knows that one of the hardest parts of our day is the moment we open our eyes and waken into the reality of our bodies, stirred from dreams of ourselves as we used to be, and the futures we imagined we’d have.

EDS is a scary and challenging diagnosis, but the consequences of not knowing are far greater than that of a correct diagnosis. EDS symptoms can range from the very mild to the extremely severe. One thing is certain, though: If I had received a diagnosis back when my symptoms were mild, I would be living a very different life now. Every single day, in my struggle to actualize the person I still can be, I cannot help but mourn the person I could have been.

I can only imagine how hard it must be for you, the friends and caretakers, to be there for us when you know in your heart that there is nothing you can do to make it better. So I want to tell you right now that you CAN make it better. You do. Just by being there. Just by reaching out, and making time and space for us in your lives and in your hearts. Just by saying, 'I know I can never understand what you’re going through – but I believe you. And I love you. And I’m here.