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.

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 🙂

One Step at a Time

I’m still getting used to my “new” life, but it’s getting better. I’m one big step closer to getting the right diagnosis after seeing a specialist at the beginning of February (next appointment is at the beginning of March), and I’m trying to find new ways to be productive. I started a Patreon page which I update regularly about snippets from my life with (suspected) fibro, and I’m trying to get back into writing. I actually started my new time-traveller series, but I’ll have to do some more research since I’d like it to be as historically accurate as possible (apart from the fact that my gnomes will travel there, but hey, literary freedom and all that).

First things first, though: Tomorrow’s my exam for university, the one about the Anatolian languages, so I’ve been studying and revising for that.

All three of the A Rogue’s Tale books have been republished as ebooks on Amazon now as well, and I’m finally taking to Twitter. I actually followed a lot of archeological accounts so my Twitter feed is full of amazing photos and interesting facts now.

I’ve also finished the course about Ancient Egypt and its Civilization, and have started my next Coursera course (with a few more lined up to start next week). I love learning new things, and while I’m struggling with attendance at my university at the moment, and still have a lot of times when focusing on anything is difficult, online learning allows me to take it slow while still broadening my horizon.

Hubby is a big source of support for me in this transition time from living a “normal” life to living life with a chronic illness, as are my friends.

So yeah, baby steps for me, but at least I’m walking forward.

Update

I know I’ve been very quiet. I won’t apologise for it since my life was basically turned upside-down at the beginning of this year.

You may remember my other posts about being chronically ill. Well, I finally had to admit that my pain and fatigue, and the sleep problems, and yes, even problems focusing and concentrating, won’t go away if I ignore them, if I try to push myself through rough days, or if I just have enough time to rest.

I had three weeks without work or university. Three weeks to rest, to regain my strength. I was motivated. I was looking forward to university and work again.

Cue one night without finding any sleep, and everything going downhill from there. Pain flaring up, exhaustion and concentration problems spiking, and trouble sleeping for the next couple days as well (even though I was/am exhausted). I’ve always been a fighter, going to work sick, pushing through pain, somehow, even though in the past few months, I’ve come home on more than one occasion braking down crying in the elevator up to my flat when I was finally able to let go of that mask of “I’m fine”. But now I had to stop and finally admit that no, my chronic problems won’t go away if I keep ignoring them, on the contrary. They seem to take more and more control of my life.

It’s been a very hard decision, one that cost me lots of tears, to give up teaching for the time being. I realised that I finally need to push to get a diagnosis and get my problems treated if I ever want to have any kind of semblance of a normal life again.

My GP listened to me and then gave me a referral to a specialist to have the suspected diagnosis fibormyalgia checked out further. He also sent me home without anything to deal with the problems I’m having at the moment, maybe because he didn’t know how to treat me.

I’m still waiting to hear back with an appointment from the specialist, after spending days researching doctors who have any kind of experience with fibro since I don’t want to end up with someone who doesn’t believe it’s “a real illness”.

I’ve also had to deal with the very idea of having a chronic pain issue, and that many of the other things I’m experiencing on and off are not normal, but probably part of this illness, or of some other chronic condition. I mean, yes, I’ve known that I’ve had these issues, in varying degrees, for years and years, but somehow if you don’t say it out loud, you don’t have a chronic illness. You dismiss it because doctors don’t find anything wrong with you, you start doubting yourself, you may even start believing that this is kind of normal and you’re just being whiny.

So yeah, my body forced me to accept the fact that I can’t push my body to fit my life and my dreams, but that instead, I need to fit my life and my dreams around my body and abilities. And that’s hard to accept. I’ve been uprooted and I’m still kind of floating around while I try to come to terms with this realisation, while I try to finally get a diagnosis, and while I try to get the treatment I deserve and need in order to feel better.

In order to not drown in self-pity completely, I’m not quitting my university degree (a HUGE shout-out to my professors who are willing to work with me to somehow see me through), and I’ve started writing again (I need some kind of income, after all, and I can’t yet say when I’ll be able to return to teaching, and how much I’ll be able to teach then).

Still, it’s sometimes hard to shut down the voices inside telling me that I’m a lazy fraud, that I’m not really sick because I don’t have a final diagnosis to proof it, that I’m just making it up. *sigh* I guess this will be a long road I’m on, and not one I chose for myself.

Building an Income outside of Teaching

I love teaching English as a foreign language. I really do. However, being a freelancer, I face the risk of cancelled courses if not enough students enroll, which has happened with three out of six evening courses this past trimester (with the other three running below the minimum number of students out of goodwill). The four evening courses starting in mid-January are still way below the number of students needed as well. In short, it doesn’t exactly look rosy for freelance EFL teachers here in Berlin at the moment.

What that means for me (and my colleagues) is this: We block time slots for planned courses (and we only have a limited amount of time we can block, plus if we block too much time and–miracle!–all courses run, we may very well burn out because it’s too much) and then are left with more free time and less money if courses are cancelled, usually without the chance to fill the time slots at such short notice (since a lot of courses are cancelled after the first class, or only a day or two before they should have started).

We only get paid for the hours we actually teach (which is okay with me), not for all the additional time it takes us to prepare classes, correct written assignments (and in the case of some courses, grade them), go to teacher training workshops, do all the administrative stuff. In order to determine actual work hours for possible additional payment (part of health and pension insurance premiums), the Land Berlin calculates with double the time we actually teach. To put this into perspective: According to them, a full-time job with an average of 40 hours per week would be about 27 class hours of teaching (à 45 minutes each). Currently, my plan for the upcoming trimester has between 20 and 27 class hours, and one week of 35 hours (a week-long intensive class). That’s besides going to university for currently 12 class hours each week (plus preparation and homework) for part of the upcoming trimester.

So you see, I can’t possibly plan even more time slots for teaching, so if most or all of my evening classes are cancelled, it leaves me with only a fraction of the income I’m planning with. I either need more students, or a second (passive) income to counterbalance the risk.

And that’s why I started to upload designs to Redbubble for T-shirts, coffee mugs, notebooks and stuff. I will add to them as inspiration strikes me, so maybe check back every now and then.

I also have my children’s books about Miro the Dragon up on Amazon (print and ebook). The first book is available in German, English, or Mandarin Chinese, and the second book is available in German.

Anyway, it would mean the world to me if you took the time to check out my stuff. Thanks for your support!