It’s a pretty long and complicated story and I’m not going to get into it all now, but in the spring, after I had genetic testing done, I was undiagnosed with EDS and re-diagnosed with something different. It caught me off guard but with time and research I was able to wrap my head around things. The reason I didn’t say anything is because even though the geneticist diagnosed me, I was waiting until I saw a specific specialist to clear things up further.
I finally saw that specialist on Monday. Though I thought I would be writing a very different post this week, frustratingly, nothing was cleared up; a lot of what she said was opposite to what the geneticist said. It was very confusing. Also heartbreaking. Because for now, I don’t have a diagnosis. She’s looking into things more and so this heartbreak might all be for naught, but I’m currently undiagnosed. And crushed. And out of fight.
And I know that unless it’s happened to you, it’s hard to understand why I’m so upset about this, why a diagnosis even matters. Here is why.
You live in a house.
This is not just any house. This is a house that you never get to leave. And that sounds suffocating but it’s not because it’s not that you never get to leave this house, it’s that you never need to leave it. You work, play, sleep, eat, and socialize in this house. Everything you need is inside this house.
Until one day, out of nowhere, one of your rooms burns down.
How strange is that? You didn’t even know that individual rooms could just burn down like that. You talk to a house expert who talks to a house sub-expert and they tell you that sometimes rooms just burn down for no apparent reason. That’s a bit unsettling, but eventually you just have to accept what happened. It complicates things, sure, but you’ve still got a house full of fire-free rooms. You’ll make do.
Until one day, it happens again. Another room burns down.
Okay. Wait just a minute, now. What is happening here? This must be related to that other room that burnt down, right? You consult the house experts and once again they tell you that sometimes these things just happen. You don’t totally buy it but what else can you do? You’re not an expert. You just have to readjust.
And then, before you know it, another room has burnt down. And then another. And another. Plus four other rooms are on fire.
Okay, now there’s no way this isn’t all related.
You bring in a house expert who calls in another expert. And when that one doesn’t know what to make of your house another expert gets consulted. And even more after that.
They all start off the same way. They stand on your front doorstep, confident that they can figure out why your house keeps burning and how to make it stop. They reassure you that together you’ll figure this out. And because they’re the experts, you trust them. You believe that they will help you, and so you let them in.
After they do their inspection, each new expert realizes that they really can’t figure out why your house keeps catching fire after all. And because of course if the expert can’t figure it out then it must be your fault, some of them ask if maybe you’re starting the fires yourself. What a ridiculous question. Of course you’re not setting your house on fire! They tell you to try not to let the fires ruin your house, which is just the most baffling thing because by its very nature fire is destructive. They tell you to just keep breathing. Do they not realize how hard it is to breathe when every breath you take is full of smoke?
And then, despite what they said, despite how they promised to help, the experts end up shrugging their shoulders and walking out the front door. After it happens enough times this stops surprising you, but it never stops hurting you.
Hurt as you may be, you resign yourself to just try and keep breathing while you wait until another expert comes along.
Meanwhile, your neighbours keep offering you ideas about how to stop the fires. They’re not house experts, and their own houses have never been on fire like this, but that doesn’t stop them. Try water, they say. Use a fire extinguisher, they say. You’re so confused because of course you’ve tried those things already! Some of them tell you to just stay positive and then your house will stop burning. You’re not really sure how smiling at the flames is going to help matters but you’re doing your best to smile anyway.
Somewhere along the way you start wondering if maybe you are in fact starting the fires yourself. Even though you haven’t used your hair straightener since the first fire started, maybe you left it plugged in. Maybe you left a candle lit. You don’t own any candles, but maybe that’s what happened anyway. Maybe, if you just stop thinking about the fires then they will stop happening.
Except that doesn’t work because while you’re trying to ignore the fires another three rooms burst into flames.
You look out the window and see your neighbours living their lives in their houses that aren’t on fire. It’s been so long that they hardly even notice the rubble within which you live anymore. What you would give for a breath of that clear air they’re breathing; they don’t know how clear their air really is.
A few more rooms have now burnt down. Even more are on fire.
Now your awesome house with everything you need is not so awesome. You’ve lost the kitchen. You’ve lost the office and the rec room. So many other rooms, too. You’ve lost most of your windows and doors. You don’t get to work in your house anymore. You don’t get to have fun in your house anymore. You’re always exhausted from trying to stop the flames, from trying to stay one step ahead of something that’s one hundred steps ahead of you.
Now you do feel trapped in your house. And scared. Because you keep losing rooms and no one knows why. Because you’ve already lost so much, and as time goes on and more of your house catches fire you’re left with less and less. You don’t know when the next room will be destroyed.
Your house was everything and now the fires have left you with almost nothing.
It’s clear that something is wrong with your house. Everyone knows it. They can see it. They just don’t know what’s wrong. And they don’t know why ‘the what’ matters.
But there you are, choking on smoke while, fire by fire, your house burns down around you, and there’s only one thing you know for sure: