Why I’m celebrating my incurable diagnosis

“Are you diabetic?”

I’ve heard it before. I’ve been hearing it for years, in fact, but with the recent ER visits for an infection around my central line and the days of IV antibiotics and re-assessment that followed, I heard it five times from five separate doctors all within one week. Gastroparesis and autonomic dysfunction are common co-conditions 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 20’s, 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.

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I have Ehlers-Danlos Syndrome. 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 that there would be ups and downs, highs and lows, but that I would be tackling health struggles for the rest of my life. And that hasn’t changed.

Here’s what has changed.

Next time I meet a new doctor and they ask me why all of this is happening to me, I will have an answer. 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 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 that it’s not just all in my head.

When I first learned about Ehlers-Danlos Syndrome over 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 ah-ha moments. Yes, 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 is a long list of little things that all of a sudden make a lot of sense since this very important piece of the puzzle has been added.

So no, I’m not happy about all of the struggles future me has to deal with, but I am happy to have a better understanding of all of the struggles 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!

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Hugs from a cloud with a touch of life perspective

This post is inspired by my new towels.

You might be thinking, “Alright she has really lost her marbles this time,” but that’s just not the case. First of all, I don’t think I’ve ever owned any marbles thus I have no marbles to lose. And if it’s my sanity you are worried about, does this really look like the face of someone who’s going a little crazy?

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I didn’t think so.

Sooo where was I?

New towels.

I got some new towels for my birthday last week. I didn’t ask for towels, not because I didn’t want them but because I didn’t know what I wanted. It turns out that new towels ended up being one of the most exciting gifts I’ve ever received!

Unlike the old, mismatched and slightly scratchy towels I’d been using, these new towels are awesome! I was feeling very grown up as I started pulling towels out of the gift bag…hand towel, face cloth, bath mat, larger-than-a-hand-towel-but-not-too-large-perfect-for-wrapping-up-wet-hair towel…and then there was one more. I held a large towel in my hands and became very confused.

”What is this one for?”

“It’s a bath sheet.”

“But what do I do with it?”

“It’s a towel. Like a towel-towel. Like for showers.”

Before you start to think that I’m just the most clued out person ever, you should know that I’ve never had my own ‘bath sheet’ before. (Side note: who knew that those large towels were even called bath sheets?) You see, for as long as I can remember I’ve used beach towels. When I was growing up we all used beach towels for showers because you could buy large, inexpensive and relatively sturdy beach towels at Costco in a variety of fun patterns, perfect for three kids who shared a bathroom and didn’t want to get their towels mixed up.

That’s just how we did it. I so clearly remember being the first kid home one day when my mom had bought us all new towels and getting first pick (I am the youngest child so getting first pick was very exciting)! In fact, just a few weeks ago I noticed that my towel was getting scratchy and I’ve been meaning to ask my mom to pick me up a new one next time she was at Costco. As I said, beach towels are just what I know.

So when I pulled out the bath sheet I didn’t know what to do with it. It seems silly now but it never occurred to me that I could use anything other than a beach towel.

It never occurred to me that there was another way.

Before I continue I just want to say that my new towels are absolutely delightful! It’s like being hugged by a cloud. I’m not talking about real clouds…the large collections of tiny droplets of water or ice crystals…I’m talking about fluffy and trampoline-like clouds, the kind that I dreamed about jumping on as a kid. My old towel has a fun pattern, but look how sophisticated my new bath sheet is! (By the way the wine glass is just to emphasize the level of sophistication.)

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Energized by the awesomeness of my new towels, I started to wonder about my routines and my habits…how many times have I done something a certain way just because it never occurred to me there was another way to do it? I love a good routine as much as the next person. Truthfully, I probably love a good routine more than the next person; I’m a big fan of tradition and not a big fan of change.

But sometimes change is a good thing! Sometimes an open mind or a willingness to try something new is worth it.

When my sister graduated from a crib to a real bed (and just in case there is any confusion this is not a recent event but one that happened before I was even born!) she didn’t know she could get out of it on her own. After she woke up she would call for my mom to come take her out of bed because she just assumed she was stuck in bed like she had been stuck in her crib.


Aside from Natasha being a cute toddler and aside from this being a cute anecdote, this story has a point. She was stuck in bed because of boundaries that didn’t even exist. How often do we limit ourselves by never bothering to find out if the barriers holding us back are even real or not? My first word was “uh-oh” and my nickname is Careful so I’m all for being cautious, but sometimes taking a chance and venturing over the edge of the bed is worth it.

I don’t want to be stuck in bed and I don’t want to go through the rest of my life using a beach towel instead of a bath sheet. Literally and figuratively.

In case I haven’t said it enough times already, my new towels are awesome. And I want as much awesomeness in my life as possible which means keeping an open mind and being willing to do some things differently from how I’ve always done them. I’m grateful for my new cloud-hugging towels, but I’m also really appreciative for the reminder and encouragement to let go of what I know and try something new. Different isn’t always scary. Sometimes it’s fun. Sometimes it’s eye-opening. Sometimes it’s freeing.

And sometimes it’s awesome.

You know what else is awesome? My new towels. Alright I’m done now!

Room for reality

It’s not a secret that I’m an optimist. I look for the good in everything and everyone, and I always try to give other people the benefit of the doubt. I believe in the power of positive thinking, especially when it comes to living day in and day out with a chronic condition.

I am also a realist. I like to be aware of and prepared for all possible outcomes, and I don’t hide away from the parts of life that are messy or uncomfortable (except for the dentist…I really need to make an appointment…). And as a realist, I believe that positive thinking can sometimes be hurtful, too.

Just hear me out…

One of the hardest parts about living with a chronic illness is grieving your old life and accepting your new normal. It’s an ongoing process and I still have days, or even weeks, when I’m totally just bummed out by my life.

What makes this process even harder, though, is that the rest of the world has a hard time accepting that a chronic illness isn’t just a temporary thing. As humans we do not like to see each other suffer and we do not like to feel helpless. We just want to be able to say something, anything, to support each other. As such, those of us with chronic illnesses hear a lot of various forms of the following:

Don’t think like that, you never know what will happen!

Just stay strong and one day this will all be behind you!

Things are going to turn around for you, just you wait!

You’ve just got to stay positive and things will get better. I can feel it!

(And a personal face palm favourite of mine) You’ll be eating [insert delicious food here] before you know it!

I know that when people say things like this they are coming from a place of genuine care and concern. I know that, and I appreciate that, but hearing things like that is when positive thinking becomes more hurtful than helpful. While we are just trying to come to terms with the fact that our lives will never be the same, the rest of the world is trying to encourage us by convincing us that it’s all just temporary.

I can clearly remember feeling caught in the middle like that in the weeks after my NJ tube was pulled. It became clear to me quite quickly that I was probably going to need a more permanent feeding tube. Of course I was hoping for the best but I was also trying to prepare for the fact that my life was about to drastically change. The problem was that no one let me say so; whenever I mentioned it I was told not to go there and not to give up. I was told that if I just kept fighting I could get better. The rest of the world was not ready to face my reality so I had to face it alone.

Without a touch of realism, optimism can do more harm than good for people with chronic conditions. We start to doubt ourselves and think that maybe we’re just not trying hard enough. We try to keep our expectations in check with reality, but then we start to wonder if we’ve confused being realistic with being pessimistic, and if doing so is keeping us from getting better. So we put on a smile and we pretend to be positive when really we just feel isolated. We’re still going to worry about the future, but we’re going to be alone with those worries.

It needs to be okay to talk about reality. Hope for the best, absolutely, but it also needs to be okay to prepare for the worst. And here’s the thing: when we are honest and upfront about less than ideal, yet realistic, outcomes, when we get the chance to really wrap our heads around them, we are able to fight harder to avoid them. Making room for reality does not make us lesser patients or lesser people, but it does make us better advocates. It makes us stronger and better prepared to face whatever life deals us next.

Optimism and realism are not mutually exclusive. The way I see it, reality exists whether we acknowledge it or not. Think about it like a room. Reality takes up a certain amount of space in that room. When we try to ignore reality, we end up feeling isolated, doubtful, confused and worried. All of a sudden we have these negative emotions taking up space in that room, as well, which means we have less space for optimism and the good things in life. When we acknowledge reality, however, when we face it and let it exist in our lives, we rid the room of those negative emotions and we end up with extra space!

I’m an optimist, but I’m also a realist. In making room for reality I ended up with that extra space!

So I choose to fill it with joys and silver linings.

And I have reality to thank for that.

Joy jar