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What Hope Means to Me as a Woman With Ehlers-Danlos Syndrome

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Hope is a verb and a noun. It is a doing word and an entity. I am hoping. I have hope.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

Hope might seem a confusing concept within the realms of illness and disability, but for me, it is the simplest thing in the world, because I don’t stretch it further than it will go, not until it snaps, just far enough, never broken.

I do not hope for the things that many might expect I do.


I have Ehlers-Danlos syndrome. No, I do not hope to be cured. For what it’s worth, neither do I wish I had never been born with the condition. Why, you ask? There are several reasons. The first, and foremost, because it is such a formative belief in my life that things happen for a reason. I believe my having Ehlers-Danlos was a part of a much wider, much bigger-than-I plan, and I think this condition has shaped me as it was supposed to. I believe that, because of Ehlers-Danlos, I have beliefs, wants, goals, dreams and opportunities, all of which are integral to me, who I am and where I am headed in my life.

Secondly, I do not hope to be cured because this way I will, for one, be pleasantly surprised should a cure come my way, but because it also means that my hopes for a cure’s eventual existence are not dependent on my own relativity to it. I hope there will be a cure so that another young person with Ehlers-Danlos will one day be able to use it, but if that time comes after I am too old, or there is a much younger person than I, with more need for it, my hopes will not be disappointed by my own non-access to any cure that does come into being.

Now that I have covered what I do not hope for, what are the things I do hope for?

I hope for happiness. I think this is achievable. I hope to love and be loved, to make a difference in the world, whether this is on a grand scale or to just one person. I hope to always be growing and improving and becoming kinder than I was yesterday. I hope to be the best version of me that I can be, and to be an optimistic, good person – those things I have always admired in other people.

I leave my hopes a little broad, when I can (I’m still working on it!). I hope to have a family, children whom I can dote on, but I am doing what I can to leave this hope open for interpretation, open for the children who I will mostly likely be adopting because of pregnancy complications of my condition, but whose arrival will happen when and how it is supposed to, ultimately without any of my say or ability for prediction (and it will be just as wonderful either way).

I hope I will be able to have a job I enjoy, one where I can spread love and be creative. I hope that one day, I will have a nice little wedding with someone who loves me.

I don’t hope to be totally healthy, rather to keep the level of health I do have, to enjoy my life as much as I possibly can, to make the most of my health, and to do what is in my power to keep it as good as it can be. I don’t hope to fixed, but to be just fine with liking the way I already am.

I hope for a world where my children can grow up safe and content and joyful, where I will find like-minded friendships, and where people wish other people well.

I am opening up my hopes so that there is always room for more, and I am hoping not only for the things I’ve not yet grasped, but for those things I already have (like a wonderful mother, the ability to overcome and a roof over my head – there are lots of things I have already that are more than worth hoping for!).

Do not imagine that because I have a chronic illness, hope is less meaningful for me, or that it can mean only one thing. Hope is everything, in everything, everywhere. I am hoping every day. I am also having hope, and while my fist tightly grades around hope, I feel sure that everything will be as it is meant to be.

Thinkstock photo via zapolzun.

Originally published: June 20, 2017
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