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:
It matters.
Finding my Miracle 
This is very powerful. I saw doctors for 26 years before I finally got my POTS diagnosis. I can relate to so much of what you write here. I truly hope someone can offer you an explanation soon. I know how awful it is to be without one.
I found your blog when I did a search for feeding tube blogs. My name is Heather and a year ago is when I first got sick. In January I was told that I have gastroenteritis and we tried meds but nothing was working. 6 months later is when I had to get an NJ feeding tube placed and I had it for 7 weeks before we took it out because it was making things worse for me. But once we took the tube out I kept losing weight and was only eating one meal a day if that. So on Nov 3rd I got a permanent feeding tube placed and I’m still recovering from the surgery but it’s been painful recovery and I have had to still work during it. I was back at work the day after surgery for my grave shift. Right now I can still eat by mouth but if I do I get really sick so I try to only eat if I’m starving and if my stomach starts to growl. I am on feeds 24/7 but we are taking it slow because I get really nauseous with the feeds. This has been so hard and I don’t have a ton of family support besides my brothers. I’m scared things are going to get worse for me I can’t gain weight and when I do I lose it to fast. My drs are at a lose as to what we should do next and so we are just doing the feeding tube and nothing else.
I don’t even have people I can talk to. I have been looking for support groups or trying to make friends with gastroparesis but I’m having no luck so far.
Hi Heather – so sorry for everything you’re going through, physically and emotionally. Send me an email (findingmymiracle@gmail.com) and I’ll send you some resources for where you can find support. Hang in there!
I am so sorry to hear that 😦 I’m assuming the geneticist was familiar with the fact that hypermobile EDS can’t be diagnosed by genetic testing right now? Because we don’t know yet which mutations cause it? I was just diagnosed last Tuesday by a Rheumatologist, who isn’t even sending me to genetics because I’m hEDS with possible slightly cEDS crossover – and even classical is only able to be found genetically 40% of the time.
I’m so so sorry to hear all this. I can’t even imagine how crushing it would be to have a diagnosis taken away, especially when it isn’t replaced with something else. I hope someone can continue to help you.
i like this piece a lot. very well put together and i can feel u in it. check out my last post about hurting if u have a second or 2.
I love this and I have shared it on PainPals regular feature Monday Magic Inspiring Blogs for You! Claire x
This is really delayed but thank you so much!
No problem – and you are so welcome x
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Pingback: It is Hard to Imagine Being Chronically Ill, But Here are 5 Metaphors
This is some excellent imagery, so articulate! Will reshare and also link up to one of my blog posts. Thanks so much!
You’re not really sure how smiling at the flames is going to help matters but you’re doing our best to smile anyways….this line just struck me
All I can say is I understand…..
living this myself…my thoughts are with you, at least we know we are not alone
Sending hugs ❤
Dear Catherine
This is the second time this week that your love and courage have moved me to tears: firstly your insights about how to live: care, feel, rally, repeat – and now your description of the terrifying process of losing vitality, life, while no-one seems able to help. I’m sorry, a couple of weeks ago I became one of those ‘have you tried?’ folks when mentioning Dr Diana Driscoll and her clinic to you…! I’ve no experience of that place myself, but any centre that wants $5K for a week’s diagnostic miracle needs to be considered with caution. However, when looking for reviews of it just now, I came across a blog by someone who sounds on a similar journey to yourself, and this page in particular made me smile, and seemed to echo your witty reflections on your experience. You might know her already, but I loved this page: https://letsfeelbetter.com/contact/but-have-you-been-tested-for-have-you-tried/
Longing for the world to hurry up and find your miracle. I don’t want us to lose you! Hang on in there Catherine Loads of love across the pond,
Angela x
Hi Angela – yes, I know Ilana’s blog and I enjoy her sarcastic sense of humour. Thanks for sharing. And don’t worry about mentioning Diana Driscoll to me – one, I don’t even remember it haha. And two, I understand that instinct to offer advice or suggestions. As people, we hate to see other people struggling and our instinct is to try and help, it happens to me, too 😉 Thank you so much for all of the support!
I have tears (like Lara) because it is so heartbreaking, exhausting, all the things you described. (I’ve also had skirmishes with such experts too many times before).
By golly, I hope there can be developments so that the so-called experts become able to see and find the little firebug hiding away there. Those experts don’t know what they don’t know otherwise they would know where to look. The least they can be is honest instead of promising the world with overconfidence and admitting when they don’t know instead of blaming you for the mystery.
You found a perfect metaphor for people who are not living with mystery medical challenges or rare conditions. How do you do it? Your creative mind and communication skills are gifts.
Whatever happens, remain in tune with your own body and trust your instincts. Keep your supportive allies close and I hope you won’t be in diagnostic limbo for long. Sending hugs of support for you.
xxxxx
Thank you for blogging, it’s a small window of consolation to know others around you suffer to. I’ve been on disability for fourteen years, plus my husband was diagnosed with Parkinson’s disease a couple years ago, along with Hypopituitarism. He’s had two brain tumours removed in ten years. Life is a challenge but we keep hanging on to God.
That’s a lot to handle, Laurie. I’m both sorry and comforted that you can relate, same as you. All the best to you and your husband – I’m glad you have each other, someone who can actually relate to what you’re going through.
I am so sorry go what you have to go thru.. life can be so hard and definetly not fair. Thank you for sharing yourself with others ❤
Thank you Cathy ❤
It matters!! You matter! Thank you for your gift of writing. Thank you for YOU in my life. xoxoxo
And, thousands of miles away, it matters to me.
Like Laura, this really moved me, it is so accurate – about how a significant chronic illness changes your life and continues to do so by throwing more and more at you. Yet despite it all life still matters.
That just made me cry. I’m bookmarking it because it’s the best description I’ve ever read of this life.