Last week I was officially diagnosed.

Finally.

Over the past couple of years I have picked up a number of diagnoses here and there – nothing that explained everything, but they still helped to identify some of the things going on in my body.

This one, however, was different. This one explained everything.

I have now been officially diagnosed with a hereditary connective tissue disorder called Ehlers Danlos Syndrome.

Actually, it would probably be more accurate to say that I’ve been diagnosed with Ehlers Danlos Syndrome and Friends.

Because it’s not just that my connective tissue is faulty and my joints are sliding around. It’s that it’s wreaking havoc on multiple parts of my body, morphing into problems that are substantial enough to have their own names, their own diagnoses. If I wrote them all out, I believe I’d be up to around seven or eight different associated conditions.

Which sounds like a big deal. And it is.

But for some reason, it’s feeling fairly anticlimactic for me.

I guess part of it is that I already knew I had this condition. It hadn’t been confirmed, but it’s been floating around for almost two years.

And I knew that I was experiencing complications. I felt them. This past year has seen some rapid deterioration in my condition, and I knew that something had to be causing that. Now I just have a name.

But as much as the name hasn’t felt like a big deal to me, it really has been big for the people around me.

I’ve been getting a fair number of supportive messages from friends and family along with a handful of not-so-supportive, but well intentioned offerings of pity.

And I guess that makes sense. After all, these other people haven’t been living in my body. My condition can’t be felt by them, and therefore it’s reality is a little blurry. Having a name for it, having the knowledge that something really is going wrong and being able to explain what exactly that is changes everything for them. It becomes more serious.

But it’s interesting, because while people outside of me are grappling, overwhelmed with the reality of the diagnosis, they also seem hopeful. They seem to feel that now that we know what’s going on, we should be able to fix it, or find better way to treat it.

And to be frank, I’m not feeling all that hopeful. If anything, I’m feeling a little bit let down on that front.

I already knew that something was wrong. My hope was that it would be fairly specific, and that we would be able to identify and fix the problem.

Which, it seems is not the case at all.

Because there are a lot of problems. Way too many.

It’s not fixable. It’s going to be a long-term roller coaster of waiting with bated breath for the drop, levelling out, maybe riding up for a bit, and then dropping again.

And that sucks.

Faced with that knowledge, I’m finding it hard to be hopeful in the way that some family and friends are pushing to be.

I guess I’m just a couple of steps away from them. I felt that way before the diagnosis. Now I am having to adjust to the fact that it won’t be quite as simple as I thought.

But as hard as that adjustment is, as scary as it is to face, it’s also freeing.

While I am in a sense, waiting for the other shoe to drop, I’m not waiting for them to magically tie themselves up anymore. This is my reality. I might get better, and then I might get worse, and then maybe better again – I don’t know. I can’t predict the future.

But the one thing I do know is that I don’t have to hold off anymore. I don’t have to avoid commitments because maybe by next fall I’ll be living on my own and going back to school full-time. I can go ahead with what I am capable of now, because this is my life and I’m planning on living it.

Plenty of people love roller coasters because of the adrenaline and weightlessness they feel.

Now I finally have that freedom.

So maybe my family, friends and I aren’t on such opposite pages after all. Our thoughts might be different, but we actually all seem to be feeling similar emotions.

We are all struggling to adjust to a new reality. We are all scared.

And we are all hopeful.

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  • Thanks for this! I was diagnosed with EDS this Monday and felt pretty much the same way. It seems like the people in my life are having a harder time with it than I am. I, like you, felt very little emotion with the news. I was just that sense of, yup, what’s next?

    • Oh man, I hope it didn’t take too long to get the diagnosis and that you’ve been offered some helpful options for the ‘what’s next’ part. It’s funny when you wait forever to finally have a name to put to everything and once you get it, the diagnosis itself doesn’t end up making a functional difference. I hope things are working out for you!

      • It’s funny, I was about to say that I’ve been waiting on this diagnosis for over a year, but really I think it’s closer to 8. Honestly, I’ve gotten so many other diagnoses that this was the one that just tied them all together, which I guess is function in itself. But yeah, I walked into that doctor’s office with a cane and finger splints so the what now part came pretty much immediately. I hope you didn’t have to wait too long for yours and that you’re well and having low pain!

        • Yeah, I completely know what you mean – I would say it’s been about 3-4 years, but really it’s around 8 for me too. And it was the same too in terms of being something that ties all the diagnoses together. I just read your latest post and it’s so perfect – I love the last line especially. It’s complete shit, but so are a lot of things, and that in itself can be beautiful and tie us all together. Sending lots of good vibes your way!

  • Michelle B says:

    No one could ever begin to know what you are feeling, physically and mentally. Just remember that there are people who love you. Who are rooting for you to feel however you want to feel, be whoever you want to be and do whatever you want to do. In my eyes, you are a beautiful, intelligent and strong woman.

    • Well, that just brought tears to my eyes – thank you so, so, incredibly much! I can’t express how much that means to me, and how much I appreciate it. I’m sending lots of love back your way, and all of my best wishes.

  • […] I was in Baltimore a couple of weeks ago getting my diagnosis, I also gained a new […]

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