Chronically Hopeful

Thursday, July 31, 2014

"The world is indeed full of peril, and in it there are many dark places; but still there is much that is fair..." -J.R.R. Tolkien, The Fellowship of the Ring


It's an ugly word, and one I don't much like. It sounds so daunting. So final. It's a word that tries to blot out everything else in its presence: joy, freedom, potential... and hope. Especially hope.

Hope that there might be and end in sight. Hope in a possibility that there's something else in store for you. Hope for a life that doesn't involve this illness.

But chronic... That means long-term. Long-lasting. Constant. Unending. Difficult to eradicate. Potentially incurable. That means that this disease- this illness- is your new normal.

For anyone who doesn't already know, I was diagnosed with something called Postural Orthostatic Tachycardia Syndrome, or POTS. It was last summer that we first started on my health journey, but I realize now that I've been having problems for much longer. (If you want to read more about that, check over here, where I explain what POTS is and how it affects me.)

 After getting the diagnosis of POTS, one might assume that my "journey" was over and that I would move to treating it so I could just get on with my life. Unfortunately, it doesn't work like that for most people. POTS, for most, isn't an illness on its own. In fact, the majority of the time, it's a sign of a deeper problem- the roots of which go very deep. So deep that we don't even realize they are a problem, because they're just normal to us.

I don't remember exactly when, but a while back, something called Ehler's-Danlos Syndrome was brought to our attention. And- like the good little homeschooler I am- I went and researched. And researched. And researched. Then researched a little more. And it was almost scary because the more I read, the more it felt like I was just reading my own health-biography.

Ehler's-Danlos Syndrome is a genetic disorder affecting your collagen. For some reason, my body produces insufficient collagen that can't do its job correctly; it doesn't hold things together, so I'm too stretchy. 

The most obvious repercussion of the "collagen laxity" is joint hypermobility. Having been a dancer my entire life, I never really noticed that I was hypermobile. I realized that people outside of dance couldn't always do everything I could, but I figured it was just because they weren't in dance and I was.

But dance classes can't explain away the fact that all of my fingers are hypermobile. It can't explain the fact that my elbows extend past the normal range. And it certainly cannot explain the other ways EDS manifests itself- stretchy guts, stretchy blood vessels, stretchy skin...

Yes. EDS also affects your skin. Mine isn't extremely involved, but it is mildly stretchy. If you're up for something super weird, Google "Gary 'Stretch' Turner". My skin is nowhere near that extreme, but it is a little stretchy. It's also very soft: to the point of people asking me what product I use. "Oh, it's called genetic mutation. Pretty extreme, but... Whatever works!"

 Now, some people- doctors included- make the mistake of assuming that EDS really only affects your skin and joints. But nothing could be further from the truth! Collagen is a huge part of your body, and when it's messed up, a lot of stuff goes haywire. That abnormality in my collagen causes my blood vessels to be too lax, meaning that blood pools in my legs instead of going to my brain, which makes my heart speed up and causes me faint.

Hence the POTS.

It also causes the stomach problems I have. Because my guts are too stretchy, my body has to work harder to get food digested properly. This makes for a lot of issues in the GI tract, because food isn't meant to linger in your stomach for too long, and when it does, it causes nausea, heartburn, poor appetite and/or weight loss, feeling full too quickly, and other unpleasant stuff we won't get into.

So, you see... It's all connected, and it's all a part of me.

That's the thing about EDS- it's not something you acquire, or contract, or could have prevented. It's genetic- that means you're born with it, and you will die with it unless amazing scientific progress is made.

Does this mean I will always be such a mess? Not necessarily. A lot of people go through periods where they're very bad, then get better for a while, and then have another "flare" in their symptoms.

But it does mean that certain things will likely always be harder for me than for "normal" people. It means there is a fairly high possibility of further health problems when I get older...

Sometimes I feel like I get a little glimpse as to why I have this and why it was given to me. I see that I was already given (as part of my personality) some little things that make it easier for me to cope with than it might be for some people. I see the various lessons I have learned through it and how it has brought me closer to God, and I almost begin to understand its purpose here in my life.

But then there are times- the really bad times- where it's just so hard to understand why me. Times when any kind of reason or purpose seems infinitely far away. Times when I can't see any reason why it should have to be this way. 

There are times when that word- chronic- is the only thing I can see...


It's one of the worst words for any sick person to hear. We want to hear that we will "get better soon." We want to hear that this is all just a short chapter of our lives, and that with rest and medicine, we'll be back to normal very quickly. We want to hear that there is hope for us.

But chronic... That means we're stuck with this. That means we'll be battling our illness for a very long time. That means it's part of us. That means life as we know it is over, and a new normal begins to set in. That means hope is gone, doesn't it?

But I know that my Savior is greater than my disease. My God is bigger than my small view of the world. There may be incredible pain in my world, but there is beauty, too. There may be darkness, but there is light.

And I may be chronically ill... but I'm also 

Chronically Hopeful

(This song is nearly always playing in the background of my mind or my laptop.)

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  1. This comment has been removed by a blog administrator.

  2. Very inspiring blog.thank you for sharing. I have some diseases. on
    and then go to where it says view complete profile and press that and it will bring you to
    my other blog about my.bladder disease ic. Beautifully broken. You are a inspiration.

  3. Thanks for an inspiring post! I've never thought of having chronic hope! You made the word "chronic" better for me! Thanks!

  4. Beautiful words, and what a beautiful perspective. Thank you for offering these words of hope to those reading!

  5. Chronically that.