What Doctors Actually Do When They Dismiss Your Suffering

Many people with chronic illnesses know this feeling: You go to a doctor. You know something’s wrong. But the doctor brushes you off. You leave the doctor’s office, still suffering, but now also confused, hurt, angry…and possibly, at some point, too tired to fight on. You stop going to doctors. You push on through your suffering, you may even try to hide it because no one takes it seriously. But you suffer.

I’m not sure whether doctors realise what they actually do when they dismiss someone’s suffering. I can’t believe that they simply don’t care; they swore an oath to help people, after all. But no matter why it happens, there are some serious consequences when a patient is dismissed.

Patients lose trust in doctors.

Many conditions will actually worsen if untreated. Some of them may end fatal.

Patients may start believing that nothing’s wrong with them, thus setting themselves up for feelings of guilt and self-loathing because they aren’t as high-functioning as healthy people around them.

When I grew up, I was scared that I may develop arthrosis, because a loved one was suffering from it and I was showing some symptoms that pointed to it. I was experiencing knee pain and back pain on and off, I definitely had some of the risk factors, and I went to see specialists in my teenage years almost more often than my GP. I knew *something* was wrong with my body. I hardly knew days without pain of some sort; I was always tired, I’ve been having severe sleeping problems for as long as I can remember.

But each time I went to a specialist, they examined me, then told me not to worry, I didn’t have arthrosis, there was nothing wrong with me…and handed me painkillers (that didn’t really work against that type of pain) and told me to rest. They never tried to find out why I kept having acute pain. They never asked whether I showed other symptoms that I might not immediately link to the pain, and thus not mention.

After I moved away from my hometown (and my awesome GP and gyno), I stopped going to doctors (apart from a dentist) altogether. For years, I didn’t even have a GP because I never bothered looking for a new one. I didn’t have a gyno, I skipped all those recommended annual check-ups (apart from the dentals, and I only went there because I need a retainer that needs to be replaced regularly). I was done with them. I felt like I was only wasting time going to doctors because they wouldn’t really help me anyway. I was a freelancer so when I got sick, I just rested more; I didn’t need a sick note from a doctor for anyone.

At that point, I had already been diagnosed with various chronic conditions, some of which couldn’t be treated, some others which were enough under control that they didn’t need regular treatment. When you know what you’re dealing with, and what your options are, you can learn to cope without a doctor. What will drive you crazy, though, is the stuff that’s not been diagnosed, the stuff that could be something really bad, or all in your head.

Fast forward to present day.

After another two and a half years of trying to figure out what is wrong with my knees and back (since the pain kept getting worse and more difficult to ignore), and being brushed off like before, I finally have my diagnosis. But not because a doctor finally noticed; I got diagnosed after someone online mentioned my symptoms sound like this and I went to my GP requesting being sent to a specialist to get the suspicion checked out. Turns out I have fibromyalgia, and may have had it for at least 17 years at this point (several doctors pointed out that my period pain may be partly due to fibro even though the suspicion of endometriosis has also been confirmed by now). I also have a grave lack of vitamin d, which we don’t know how long it’s been there, and what kind of damage it may already have caused to my body. Was never tested until I was checked for fibro because apparently my current (and soon ex-) GP doesn’t believe in testing for it in young patients (I got extensive lab work done to find out the cause of my sleepiness, which could have been caused by a lack of vitamin d, about three years ago but it was never tested).

Why am I telling you all this?

To raise awareness. My diagnosis came after I had to quit working because the symptoms had got too bad. I am struggling with finishing my BA even though I love learning, and always excelled at this kind of stuff. I have lived my adult life in a constant struggle of “Why can’t I function like others?” and beating myself up for being “lazy”. My sleeping problems weren’t taken seriously and I was told more than once to “just go to bed earlier”. I disappointed people because I didn’t have the energy to do something, and I felt horrible for that because they didn’t understand–heck, I didn’t understand it was because of an undiagnosed chronic illness.

I am only now, slowly, regaining my trust in doctors (because I finally have some doctors again who care). I am struggling with accepting my own limitations because, due to just pushing through my suffering that seemed to have no cause for years, I didn’t have the chance to adjust gradually and maybe stop the downward spiral before it was too late; no, I crashed hard when I had reached the end of what I could push myself through.

I am wondering whether I might still be able to work if I had been diagnosed with fibro ten years ago, or even earlier.

I have a hard time accepting that being a low-functioning adult at best (and a non-functioning minion at worst) is my normal now, and that treatment may or may not help me function better again.

I feel cheated by my body and brain for letting me down like this.

But mostly, I feel betrayed by those doctors I went to for help who brushed my suffering and my worries off, who sent me home with painkillers and told me it’s nothing.

I am 29, and I carry around a whole bag of chronic illnesses and conditions. I am not fine, never was, and probably never will be. But if doctors had listened to me from the beginning, I might be in a better place today than I am.

Getting Back into the Habit of Writing

A while ago, I started a new WIP. It’s supposed to be a series of novellas (because I can do shorter stuff much better than long stuff), not related to my children’s  books, and aimed at a more general audience (probably teenagers and up). In a way, it’s an experiment. It’s something new, something that I think may find its audience way easier than children’s and middle grade books, at least when most of your marketing is done online.

It’s been fun writing it so far, even though my initial plan to actually plot before writing this time didn’t really work out. Two days ago, my MC grabbed what little plot I had and ran away with it, laughing at me. So I’m back at doing what I always do: pantsing my way through the story. Granted, it’s fun writing this way since it keeps me interested in what happens next, but it’s not exactly the best way to make me write faster, since it tends to go slow as I may have to stop to figure out what the heck is happening in my story every now and then.

So I set myself a manageable goal of 2,500 words per week (yes, I’m a slow writer, and have always been a slow writer even before my brain fog got worse). And I’m trying to make it a habit to write regularly. My surgery two weeks ago threw me off but I’m back on it. Not up to speed yet, but writing. And by golly, I have missed the feeling of actually being a writer! It’s been far too long since I wrote my children’s books, and then there were a few years of hardly any writing following a burn-out from freelance translating and editing. Which made me feel like an imposter at times, being in those writing and writer’s groups. I hardly talked about my published books, even pulled them from sale for a while after moving since I couldn’t get myself to change the contact information and re-upload the files.

It’s about time to change that again. I am a writer. I am a storyteller. I have published some darn amazing children’s books, even if I haven’t broken any sales records with them. I know they’ve had a positive impact on people’s lives. I know it from the reviews, and from personal feedback. I know it from the excitedly glowing eyes of a girl when she heard there was a second Miro book out in German, begging her grandmother to let her buy it with her pocket money. It’s time to be proud of it again, and to own it.

I’ll make a page on this blog dedicated to my published books, just as a showcase to allow you to window-shop. And I’ll probably start talking about writing a lot more than I used to on here (that doesn’t mean that I’ll stop talking about other stuff, though).

I am a writer. And it feels good.

Hard Decisions

A few days ago, I talked to a friend about my Linguistics degree and languages, and got a bit sad that my decision to be a responsible adult and switch my focus now that I can’t teach in classroom anymore also means that I won’t be continuing with an MA in Historical Linguistics. The thing is, with an MA in Historical Linguistics, my chances of finding an online teaching job in that field are next to nothing (even teaching positions in classroom are rare since it’s a niche degree), but with an MA in Classics with a specialisation in Latin, my changes of finding such a job are a lot higher (maybe not astronomical, but definitely existant).

Now I had been thinking about taking Ancient Greek as my minor next to majoring in Latin (yes, I’m starting a second BA…and losing my scholarship because of it), but that talk really got me thinking, and revisiting the degree regulations for a few BAs and the Classics and Historical Linguistics MAs.

My findings? Much to my surprise, I can specialise in Latin in the Classics MA, meaning I’d only have one module about classical themes in Greek literature (I’d still need to actually know Ancient Greek but I wouldn’t have to do much in terms of literature studies for it). Yes! Don’t ask me why, but Greek literature doesn’t sound half as interesting to me as Roman literature does, maybe because a lot of the classical Greek epics and myths have been done ad nauseam in TV, books, etc., and because the typically treated Roman literature isn’t that limited to epics and myths.

So then I double-checked another BA I’m interested in to see whether it might be a better fit for me as my minor (I have to choose a minor with Latin), and yes, absolutely. It’s called Archeology and Culture of North-East Africa (in short AKNOA, from the German degree name), and besides a module about archeologicy, and one about writing mediums and that sort, I will be learning Middle Egyptian!

Still, Latin, Ancient Greek, and Middle Egyptian are only a few of the languages of antiquity around the Mediterranean. I want more.

I spent a great part of yesterday with research of languages and cultures in antiquity, in Asia Minor, Mesopotamia, the Orient, the Mediterranean region…and realised that I’ll have to restrict myself further since there were too many. The region and time frame are too widely set. So I tried to break it down further. I looked for the major cultures and languages from the beginning of the Hittite Kingdom till the fall of Rome (which is still a frame of over 2,000 years), and then further restricted it to the two major language families spoken in that region: Indo-European, and the Afro-Asiatic languages.

From the Indo-European side, I chose Latin, Ancient Greek, Hittite, Luwian (another Anatolian language and closely related to Hittite), and Old Persian (since the Greeks had a lot of dealings with the Achemenides, who spoke Old Persian). From the Afro-Asiatic side, there are Akkadian (which was spoken by Assyr and Babylonia, two of the major ancient cultures of Mesopotamia), Middle Egyptian, Coptic, and Demotic (the latter two developed from Egyptian).

Apart from Latin, in which I want to become fluent (since I want to teach it), I’d be happy with solid reading and translating skills from the other languages. I also want to get to know the cultures who spoke these languages. How did they live? What did they believe? How were they connected to other cultures of their time, and who was influenced by whom?

It’s a big package I put together for myself, but hey, I’m still young…

First Week of Summer Semester

So the summer semester has started in Germany. Here’s a short log of my first week back (partially written thanks to my time machine):

Monday, April 17

No university due to it being a bank holiday; semester officially starts on Tuesday.

Tuesday, April 18

No classes for me. Doctor’s appointment early in the morning so being a zombie for the rest of the day. Still, excitement of going back to university after my long health-related break builds up. Also, looking forward to seeing my profs again. Double-checking online that class actually starts tomorrow; becoming dimly aware of a special event called “Tag der Lehre” (~ Day of Teaching) at university tomorrow, which I won’t be able to visit since it’s at the same time as my class. Oh well.

Wednesday, April 19

Finally, my first actual day of class! (The woes of only taking three classes because I’m almost done.) But first, another doctor’s appointment in the morning, slightly less early. Then, coffee and breakfast with hubby, a quick League of Legends game, and double-checking I have everything I need in my backpack. Leaving for class with high spirits even though I’m far more tired than I’d like. Arriving early so trip to the copy shop to get my paper bound, which I need to hand in next week. Then settling near my classroom with an interesting book I’m reading for my Thursday class (and which I already owned before it was on our reading list because it sounded pretty good–and it is!). Slowly, a few other students arrive for class. We collectively move closer to the classroom door, I settle for reading on the floor after standing becomes too painful (knees and back). Prof doesn’t show up, we wait. And wait. And wait. Until at two thirty, fifteen minutes after our class should have been started, someone took pity on us and informed us of the fact that all classes for the day had been cancelled due to the Day of Teaching event. Yes, on a day of teaching, there’s no teaching. Go figure. So I slunk home, grumbling, hurting, disappointed.

Thursday, April 20

Trying to shove away that feeling of longing for class, and disappointment, because today’s class doesn’t start until week 2. Yep, that’s right, my third and last class for our starting week has been postponed because our prof isn’t back until next week.  I may or may not contact my GP’s office to make an appointment for some time soon-ish (honestly, I’ve already had enough doctors for one week, so might not get around to do this until next week). Spending the day gaming and reading, and studying Latin. Oh, and doing Sanskrit homework for next week Monday. Yay, something to do with my summer classes!

Friday, April 21

I have Fridays off, so I’m spending the day mostly relaxing (aka gaming, reading, sleeping, cuddling cats).

Saturday, April 22

Another day for relaxing and studying Latin and Sanskrit.

Sunday, April 23

Today, I’m not myself. We’re gaming with friends, so I get to switch out my own life for the life of my character, who definitely does not have fibro, or any other chronic illnesses.

University Paper vs Brain Fog

There’s still one paper I have to hand in for university for my current BA. One paper, and then two seminars and a written exam in June. Sounds like a breeze, doesn’t it?

Well, if you pair a very complex topic with severe sleeping problems and a brain that may randomly shut down for a complete reboot (hello, Windows, no clue how I came up with you in this context), which could take anywhere from a few minutes to the rest of the day, suddenly this one paper becomes the Iron Man.

And in case you were wondering, yes, knowing I still needed to finish this paper did stress me out. Depending on my overall mood, I’d say the stress level of this knowledge was between a mild guilt while gaming (because even with a strategy CCG, it still takes less brain capacity than focusing on a complex topic that will be graded) and paralyzing horror (as in, I have lots to do but am unable to focus on anything because I’m completely overwhelmed and wondering whether I’ll get anything done in time).

“Just plan it for the next day, make time for it.” Yeah, thanks, great advice. For healthy people. I lost count of the days where, going to bed, I did exactly that. Make a mental note that the next day, I would do X for the paper. Only to have my brain turn on me (traitor!) and prevent me from sleeping, or from getting more than a few hours of dozing between tossing and turning, and getting up exhausted and frustrated–and kind of defeated.

Believe me, working on a complex thing–any complex thing–after a night of insomnia is not the greatest idea. Unless you like lots of mistakes, or re-doing your work on a day when your focus is better.

It was a long and hard battle. I paid for it in curses, stress, frustration and gifts to my brain (aka chocolate). But, I prevailed (by the way, thanks to my very helpful brain, it took me a nice improv round of Taboo with hubby, and then a dalliance with Thesaurus, to remember this word–another thing my brain likes to do more often nowadays).

This afternoon, I finished up the paper and printed it out. (Cue the hallelujah and the angelic choir. Thanks.)

Now if I can remember to get it bound on Wednesday, and then to hand it in next week Monday, that’d be great.

Victoria est meam. Vale.

Life and Other Small Things

Life’s been busy for me lately so I hadn’t even noticed how long ago my last post has been. Sorry for that, not intentionally neglecting you. Just brain fog and other things.

So as of March 3rd, I’ve been officially diagnosed with fibromyalgia syndrome and a severe lack of vitamin D, but my doc is still waiting to see whether the lack of vitamin D is causing everything (I’m taking a high-dosed supplement now on his orders and we’ll check levels again in June). What I did notice after starting the supplement was a boost in energy levels. I’d wake up with more spoons available, and less brain fog. And I have to say, if it stays that way, even if nothing else changes, I’ll be happy. Less brain fog and more energy means I’m able to get more stuff done in spite of the pain, and it means I’ll likely be able to use the awake time when my insomnia kicks in again. You know, instead of sitting on the couch or lying in bed staring off into nothing because my brain and body decide they don’t want to work together, and sleep is not an option. If you want to follow my whole journey of life with fibro, go check out my Patreon page Fibro Warrior (most posts are available to everyone, patron or not).

Right now, though, I’m attracting koalas with my breath. None have come yet, but granted, it’s a long way from Australia to Germany. They have to be on their way. Background: I caught a bad cold, and am currently taking soft pills based on eucalyptus oil, and the oil is wafting up through my esophagus. I can smell it coming up even before it hits my nose. Good thing I actually kind of like the smell, I guess.

I’m still learning Latin, and it’s still a lot of fun–and definitely easier than Sanskrit, which I have to learn for university. Did you know that Sanskrit has eight cases, three numbers, and tons of declension classes? It’s insane! Latin’s six cases, two numbers, and (I think) four declension classes are a piece of cake compared with that.

I found the free spaced repetition website/App memrise, which is awesome! I’m currently (excessively) using it to learn Latin vocabulary, Sanskrit vocabulary, the Sanskrit writing system, Latin and Sanskrit verb conjugations and noun declensions, the Greek alphabet (which, to be honest, I already knew most of but still struggled reading fluently), and Hittite. Yes, they have spaced repetition decks for all sorts of things, even for old and dead languages most people haven’t even heard of. In short, I’m in heaven!

Writing has mostly been neglected, though, since I don’t like writing with too much brain fog. But to make up for it, my brain was so nice the recent nights to fully formulate some parts for my secret writing project–after I had gone to bed, with no intention of getting up again, or anything to write nearby. Needless to say, those well-worded passages have not been stored in my brain.

So yeah, that’s been my life for the past two weeks or so. If you hop over to memrise now to try it out, I’d be interested in how it’s working for you 🙂

The New Love of my Life

Did I get your attention with the headline? Great!

I think I fell in love with a language. An ancient one, a dead one, but one that’s still very much sought after in academics. I’m talking about Latin, which was still alive and well as language of the academics and clerus until the Middle Ages even though the Roman Empire disappeared centuries earlier.

I’m currently trying to learn Latin with the help of Wheelock’s Latin 7th edition, and so far I’m very pleased with the book (although it would have been nice if the print book included the translations of the exercise sentences). While I’m not far yet (so this impression might change), it is fairly easy for me up to now. I know three daughter languages of Latin to some more or less advanced degree (French, Spanish, Italian), and I have a linguistic background so the six cases don’t really shock me (Sanskrit has eight, and I need to learn that for university). Plus, English has a lot of words that are loaned or derived from Latin words, so taking all that together, reading and understanding Latin comes easily. I’m still struggling with pronunciation, but I expect that to get better with practice (so hubby will be subject to my tries to read aloud sample texts and poems as I continue through Wheelock’s Latin).

A poet that caught my attention through the sample text in chapter two is Gaius Valerius Catullus, who seemingly wrote a lot of love poetry (and some more raunchy pieces, from what I’ve gathered from reviews). I already checked, there are compilations of his poetry complete with annotations and translation, and they don’t even cost much, so he might be one of my first Latin authors to read in the original outside of my textbook.

Now I’m even more excited about the Coursera course on Roman Art and History that I’m currently enrolled in 🙂