I'm not going to get better

Pre-Disclaimer: I really appreciate comments of solidarity and support. That said, and I wish this went without saying by now but it doesn't, so... Any comments containing specific treatment suggestions, especially from anyone who does not have an extremely good understanding of my specific medical issues will NOT be posted (comments are moderated). They are not helpful (yes I've tried everything, yes even that), and I don't have the energy to deal with them. Please do not email me as an alternative to commenting with medical suggestions. Also, empty platitudes or any comments minimising what I've been through will also not be approved. I know you might "mean well", but I just can't anymore.

Ariane sitting at window

Here's a truthbomb for you: I'm not going to get better.

Before you jump in with a barrage of platitudes, please just check your healthy privilege. This isn't about the "what-ifs" and the "maybe somedays". This is about reality, this is about my reality. And if I sound angry, it's because I am angry, and I bloody should be.

This is about looking at what has happened so far, and predicting what will happen in the coming years based on reality. Every month I've gotten sicker. Since five years ago, when I was still able (albeit, with difficulty) to work 30 hours a week, keep myself fed, and keep my home respectably in order all on my own, things have gone so far downhill I can't even see where I started anymore. I can't do any of that now. I can't work. I can't take care of myself or my home without help. I'm no longer financially independent. I can't go most places on my own, and I can't go anywhere without a mobility aid. I can't travel (the two small attempts have been miserable failures). And I've lost a significant chunk of my prime career building, not to mention childbearing years, to chronic illness that has continued to go un(der)-diagnosed. Yes, I cope. I try and make the most of things. But the reality is crushing.

The reality is: my health has gotten worse by the year and I'm not going to get better - if anything I will continue to get worse.

And maybe that would be OK if I really had some mystery, undiagnosable, untreatable, incurable illness. But I am not that special. My symptoms actually fit solidly into the diagnostic picture of known illnesses - illnesses with treatment options. What I have seems to be largely within the bounds of known medicine. But I'm still wildly underdiagnosed and completely under-treated, despite my dedicated efforts to get help. And the reason for that isn't that there is a lack of medical information or even available tests.

It's because nobody in the medical world gives a shit.

Well, nobody with the power to do anything about it at least. Some people, like my awesome massage therapist and the integrative doctor I've seen off and on for the last few years know my health problems better than anyone. And they help me cope and believe there is something diagnosable, but they aren't able to diagnose and treat whatever it is without depending on specialists - specialists who are not helping. I have been trying for years to give the doctors I see the benefit of the doubt. Telling myself that surely, at some point one of them would deem me worthy of assistance. That they'd see how much I've lost and want to help me get some of my health and quality of life back. They'd say, "Someone needs to get to the bottom of this..." and then add, "it might as well be me".

But that second part never happens. 

They don't care why I have osteoporosis at age 35. Or why my mucus membranes and tear ducts no longer function properly (talk about things you don't think about or appreciate until they stop working). Or why my digestive system can't process fat or fibre anymore, and why I have to rely on prescription pancreatic enzymes so I don't end up in the hospital. Why when I do eat fat, it feels like someone is stabbing me in my shoulder. Or why I've lost 25 lbs since I was 20 years old, leaving me at a whopping, and terrifyingly low 86 lbs. Why I can't stand for more than a few minutes without tachycardia, angina, and eventually passing out. Or why I can't even walk around the block anymore without it crushing me for two days (and no, it's not just lack of exercise - if you even thought that, you can just leave now). Or why I'm constantly losing my voice and having trouble swallowing. Or why sometimes I can't even type a damned email for weeks at a time because my hands hurt so much. (I'm between flares now, so was able to tap this post out with my thumbs on my phone.) Or why sometimes my fingers swell up so much that I can't make a fist. Or why now my fingers are starting to go numb when my spine hurts. Or why my body can't keep correct potassium levels so I have to spend hundreds of dollars each month on supplements so my heart keeps beating properly and my muscles keep working. They call it all idiopathic (aka. there's no reason for it), even though the plausible explanations have not been ruled out. There are potential explanations (some of them even fairly obvious) for all of these. And yet I'm told over and over, for no particular reason, that there's no way it could be those things. No alternatives offered. Just dismissal.

I'm as polite and charming and well organised and informed and prepared and cooperative as a patient can possibly be. I grew up in a house where it was my responsibility to keep everyone happy - I am a near pathological people pleaser (it's a work in progress). I worked as a project manager for most of my working years, wrangling developers and to-do lists hundreds of items long, and negotiating with clients. I know how to be pleasant and cooperative, and I have my shit together.

I do everything I can to be the perfect patient so that the doctors will help me. But they still don't.

Every doctor I see takes a cursory poke at me, and then when they don't figure out what's wrong after one visit, they stop trying. This either looks like throwing me away as fast as possible like a hot potato to the next guy or just out into the abyss, or having me come back for utterly useless follow-ups until kingdom come. They dismiss new symptoms as unimportant or idiopathic even though they solidly fit the diagnostic picture for some well known illnesses. They say "I'm sorry to hear that" when I tell them I've lost another pound, or that I'm losing use of my hands more with every passing month.

I don't want this meaningless sympathy from a doctor. I want them to at least try to do something. I know not everything is fixable, but the least they could do - for me, and for the overburdened healthcare system - is fucking try. Actually listen to me when I tell them about new symptoms, and evaluate what could be causing them. Actually let me tell them something resembling a complete medical history before cutting me off when I do my intake. How are they even supposed to form an idea of what might be wrong when they don't want to hear my symptoms??? 

The doctors I've seen over and over continue to say "I don't know much about it", but don't take the time to learn anything about the condition I "probably" have. Even though it's one of the most common and most underdiagnosed autoimmune diseases out there, and a condition they should reasonably be able to learn the basics on. And yet, when I spend hundreds of hours learning about it myself so that I can offer useful information, they don't even want to hear it. Because how could I, a lowly patient possibly know anything? All they want to see is my file, and my file is a liability. It's full of old, useless distractions - garbage diagnoses that I don't even meet the diagnostic criteria for, and haven't been evaluated for in any formal way. Bullshit about me being an anxious or difficult patient because I dared to go get a second opinion, or had a moment of humanity and shed a tear in the doctor's office (this has happened exactly twice, which I think I should get a damned medal for). I have no way to get any of this stricken from my file, and by the time I walk into any new doctor's office, they've read it and already decided that they won't help me. Because every doctor before them said there's nothing wrong, and nothing to do. I'm unhelpable, so why even try?

Look, I'm not stupid. I have a masters degree, and I know how to read complex information and break it down, and go through basic steps like a diagnostic workup. If I was a healthy person, I could go to med school and become a fucking doctor, I know I'm smart enough. But they don't go through those workups to evaluate me properly for the conditions I have the symptoms of. Instead, they treat me like a child, sometimes even mocking me and raising their voices, sending me into a place in my brain that was created when I was a child, that I then have to hide so I don't add to the list of reasons to dismiss me. And then they send me away, often blocking me from even getting referrals to other doctors who might know more and be able or willing to help, because I've "already seen a lot of doctors".

I often wonder if that's because I look like a child... I'm 35 and have greying hair, but I'm a small woman. 5' 1.5", and now that I've lost 25 lbs. over the last 15 odd years, I weigh as much as I did in childhood. I don't work. I don't have kids. So, I'm not an adult, right? Not someone who could otherwise have a full and productive life. 

When it comes down to it, my life doesn't matter to them. If I was a big burly man in a suit, with a six-figure income and children to support, and in a matter of a few years, I had become this disabled, do you think they'd all be so happy to not even try and figure out what's wrong with me? Think about that for a minute. 

My life isn't important. I've got a spouse who can support me (because I've been one of the lucky ones whose spouse hasn't deserted them because of their underdiagnosed illness), so it doesn't matter one lick whether I ever get better.

And I won't. I won't get better. As long as I don't matter to society, and I'm just another annoying patient who's "too complex" for my doctors to deal with, I don't even have a chance. 

I've fallen through the cracks, like so many others, nearly all women, in our prime career and family building years. 

I've been abandoned by the medical system. There is no place for me. I've been abandoned by much of society, or at least the parts I was a part of before all of this. People I spent countless hours supporting during their own life crises have disappeared on me. Even the ones I thought would never stop caring, they've grown bored of my not getting better yet. One by one, a slow leak from a cracked bucket. All too often people like me are abandoned by our families and friends, and I'm not sure why - maybe because if the doctors don't care, why should they?

I'm not going to get better. 

Not here at least. The healthcare may be free, but it is not adequate. Not for people like me. Maybe one day I'll have the chance to go somewhere where the doctors actually care. But that day is not coming anytime soon. I'm turning 36 in less than a couple weeks, and I have spent the last four years doing absolutely everything I could to try and get better. I'm left having to accept that the entirety of my 30's is almost certainly a write-off. Don't tell me I'm more than my health, don't tell me I still have value. I know that. But that doesn't mean this is okay. And it doesn't mean that my living like this is necessary. It is so fucking hard - unless you are living it yourself, you have no clue. 

There's nothing else left to do now. 

The doctors, the same ones who have barely lifted a finger as far as trying to diagnose me or seek out potential treatments, have been all too eager to tell me to stop trying to find help because I'm not going to get better. And now I believe them. The people who are paid by an entire country's tax dollars gave up on me before they even tried. It's not fair, but it is reality, and now I'm sentenced to a life of (probably unnecessary) disability. And yes, there's nothing wrong with being disabled - but when you could be healthier and are being held back from that possibility by the very people sworn to help you? That is not okay. I've blamed the system for a long time and tried not to take it personally. But that system is made up of individuals who have been so terribly unhelpful, dismissive, and even cruel... I can't just let it go anymore. This is my life, it is personal.

There is so much that is not within our control. That may scare or repulse you, and make you want to blame me for my illness in some way, so you can feel immune to it happening to you. You can think I have a bad attitude or haven't tried hard enough. But you would be wrong about all of that. One day you might come to understand this, but I truly hope not. Nobody deserves to be condemned like this. And yet, here I am. Here we are. Me and the thousands of other women who never even get a real chance at getting better.

Post-Disclaimer: In case there's any confusion in interpreting my emotional state, it is not depression (though it probably should be by now), it is anger and grief. Anger over the shit show of a healthcare system and lazy doctors that have left me with zero hope of getting my life back, despite probably having treatable illnesses. And grief over the enormity of what I've lost because of this. I hope you never have to understand this for yourself, and if you already do, then I'm sending you all the love.

Comments

thank you for writing this. this is my experience as well. under-diagnosed, naturopaths know there's something wrong but can't help, medical doctors deny something is wrong and refuse to help. i am 34, no kids, married, graying hair, looks like a child, small and female. we are dissmissable. xo

I'm so sorry to hear that Katie. I think in ten (or twenty?) years, there will be proper clinics for autoimmune disease and other neuroimmune disorders, and people like us will really get help... But I honestly don't know what we're supposed to do in the meantime. Not to mention the sexism in healthcare. It should be criminal.

I think you're right. Our bodies present disease in a way that doctors don't know how to deal with yet; and hopefully one day they will. I hope you and I can keep fighting, but expressing how it feels to be this kind of patient is essential and helpful <3

I hear your story and your pain and I'm so sorry for what you are going through. It is so not right to be treated like this.

Wow, just wow...I am so sorry you're enduring this craziness, Ariane. There should be better doctors. There should be better solutions. There should actually be quality care available to help you. My heart weeps over your predicament. I've noticed a huge 180 turn in the behavior of doctors before and after my health issues worsened. Before, I could look normal, was more well spoken, and well...my eyes weren't rolling back in my head. Now I'm being told I look 14 and I'm treated as such. As much as I hate it, I have to have a couple of people with me address the docs as my advocates because they simply will not take me seriously otherwise. I'm not sure if you do have an advocate, but it's something you may want to consider. I love your line here: "There is so much that is not within our control." YES, A THOUSAND TIMES OVER!! I've been trying to communicate this message to so many, but unfortunately, it DOES freak people out. People would love to believe that if they did x,y,z they wouldn't end up in your situation, yet sometimes all the precautionary measures in the world won't stop a terrible incident from occurring. Much Love To You!! -Sarah

Thanks for the solidarity Sarah - I looked into hiring an advocate (they are uncommon here, there is only one in my city) but they didn't seem to have any more ideas of how to proceed beyond what I was already doing, and for $100+ an hour, it just wasn't feasible. I don't really have anyone in my life in a good position to do that as a favour, with how complex my health issues are and how many appointments I have - it would be a part time job to take on. I know it could help in theory, but I'm kind of on my own in that respect at the moment. It's good to hear that it helped for you though, I will keep that in mind!

Hi Ariane,

Swiping through many articles and 'likes' in facebook i stumbled on your post. We haven't talked much, and I've always thought of you as "the small girl that had so much charm to seduce my friend Bruno to move over to the other side of ocean".
Reading your post I have this strange mixed of unease and admiration. Unease because basically at our/your age we shouldn't be writing stories about unexplainable sickness You should not be writing about a failing medical system in a 'developed' country. Unease & Angerness.
Admiration also. To see you finding the physical&mental strength to scream out your anger and your fears.
I wish you and Bruno all the strength and love to get through this.

Hi Roel! It's always a nice surprise hearing from you. :) Haha, you think I was charming, you should have seen Bruno! Writing me all those emails, and buying a plane ticket to come see me in Canada...

I wish more people felt uneasy about all of this. It's like a quiet plague among people in their late 20's and 30's (mostly women). I know so many others in my position, it is just horrible. I'm very lucky to have Bruno's support, and I know we will find a way to keep on going as long as possible, but there have been some scary moments and we're really at our wits end as far as options. 

Really appreciate the supportive words.

Hey, sounds like you have worked hard on trying everything. Seems like nothing is working and I'm guessing you are dealing with it day to day. Very difficult and I wish you and Bruno well in these hard times.

Thanks for the well wishes Phillip, day by day is kind of all we're left with at this point, it's very frustrating but we really have tried everything short of re-mortgaging our home and going to the US to try and get help there. It shouldn't be this hard!

I just wanted to add a link for posterity to this comment on Facebook from one of my under-diagnosed comrades, Dave, so it doesn't disappear completely into the social media ether. He is possibly the only man I know who's found themselves in this parallel universe, and is a local legend who has given so much to others only to become another lost soul bouncing around the medical system. He was one of my colleagues in the tech world, we organized conferences together when we were more spritely, and it crushes me that he's in the same situation.

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