Why I’m Celebrating My Incurable Diagnosis

“Are you diabetic?”

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

I’ve heard it before. I’ve been hearing it for years, in fact, but with recent ER visits for an infection around my central line, days of IV antibiotics and the re-assessment that followed, I heard it five times from five separate doctors all within one week. Gastroparesis and autonomic dysfunction are common comorbidities in diabetes, so after all these years, I now fully expect to be asked this question.

During that same week, a triage nurse commented on how I was so young to have so many random health problems. A nurse in interventional radiology asked me what the plan was for getting me better and back to normal life. And an ER nurse’s eyes welled up with tears after she took my lengthy medical history and then realized we were the same age.

Again, these are all really common and understandable responses. Health care workers are more accustomed to seeing complicated chronic conditions in older patients, not patients in their 20s like me. It probably doesn’t help that despite having recently turned 24, I’m often mistaken to be 15 or 16 years old!

All of these reactions are usually followed up the same way. Why? Why do you have this? Why is this happening to you? Why aren’t you getting better? Why isn’t your age allowing you to just bounce back?

For six years I haven’t had an answer, but now I have one.

I have Ehlers-Danlos syndrome (EDS). I have an incurable connective tissue disorder that affects my joints, blood vessels and organs. I’m not going to magically get better, and it’s possible that things might get worse.

And I’m celebrating.

To be clear, I’m not celebrating the incurable-not-getting-better-but-maybe-getting-worse part. That part is as overwhelming and frustrating as it sounds.

But that part really isn’t anything new. Sure, we didn’t know what was causing all of my problems, but it was well established that my illnesses were chronic. It was understood there would be ups and downs, highs and lows and that I would be tackling health struggles for the rest of my life. And that hasn’t changed.

Here’s what has changed.

The next time I meet a new doctor and they ask me why all of this is happening to me, I will have an answer. The next time I wonder if my illness is something I brought upon myself and could have prevented, I will know that’s not the case. And the next time I experience some bizarre new symptom and I want to pull my hair out wondering why my body is so strange, I’ll know that strange is just par for the course and it’s not just all in my head.

When I first learned about Ehlers-Danlos syndrome more than two years ago, I immediately thought, “I think I have that.” However, as many chronic illness patients know, most doctors don’t really appreciate it when we diagnose ourselves and then ask for the tests or referrals to confirm it. It took a lot of casual mentions, strategic asking of opinions, polite acceptance of brush-offs, insistent re-mentions and then, as always, months and months of waiting. Now that I have a diagnosis, I also have a reminder to trust my instincts and never stop advocating for myself.

This diagnosis brings a lot of peace of mind and a-ha moments. Now I know why I can’t eat and why my body sometimes forgets how to stand up, but there are so many other things about my life that all of a sudden make sense! Now I know why my dance teachers used to get after me for having ugly elbows, loosey-goosey shoulders and knees and ankles that didn’t line up properly. Now I know why I hold my pens and pencils differently. And now I know why my family used to give me strange looks when I couldn’t finish my steak because chewing was just too exhausting and painful. (Apparently, not everyone feels like their jaw is going to fall off while eating steak.) There’s a long list of little things that all of a sudden make a lot of sense since this very important piece has been added to the puzzle.

So no, I’m not happy about all of the challenges the future me has to deal with, but I am happy to have a better understanding of all of the challenges I’ve already faced.

I’m happy to have some answers.

I feel heard and I feel validated.

I feel empowered. And that is why I am celebrating. Ugly elbows and all!

 Follow this journey on Finding My Miracle.