I’ve been unwell for over a decade now. And still, every time I have an appointment with a doctor, there’s a little war inside of me.
One side gets excited; maybe this doctor will be able to help. Maybe this one will know something more, be able to do something more. The other side of me scoffs. How many doctors have I seen already? How many have just drained my bank account and left me on my own again? Better to not get excited, better to not get my hopes up. But that little seed of hope is stubborn. No matter how hard I try, I can’t squash it.
Often, I have to wait months for an appointment. Doctors, especially specialist doctors, are busy people. Good doctors are in high demand, and there are only so many of them to go around. So I impatiently wait my turn. I pack my bag the day before. I take my medications, fill up on fluids and salt, and put on my compression stockings. I get up early and shower. I recline my chair in the car to try to help with the long travel time. I’ve got all my relevant past test results, and a list of my current symptoms I need help managing. The address is plugged into the GPS.
But when I get there, I’m often disappointed. Instead of DR. I-Can-Help-You (who I’m quite sure I booked an appointment with) there seems to have been a mix-up. I sit down in the uncomfortable chair and have a consultation with…
(aka DR. It’s-All-In-Your-Head)
(aka DR. You’re-Just-Doing-It-For-Attention)
So, you’re having dizzy spells and passing out? Seizures? It must be depression.
Do you have many friends? Yes? Hmm.
Do you enjoy school? You love it? Okay then.
How’s your home life? Fantastic? Right.
But how do you feel within yourself? Bubbly and happy? Oh. Yes, it definitely sounds like depression.
What’s that? You also have limbs falling off? And blood gushing out your ears? Yes, those are also classic symptoms of depression. Have you considered seeing a therapist?
(aka DR. “La-la-la-I’m-not-listening)
“Those are not listed side effects of the medication,” the GP tells me, as he scans the list of reported side effects listed on the drug’s website.
“But I take this medication, and these symptoms happen. I stop the medication, and they go away. I start it again and they come back. It’s the medication,” I insist.
A weighty sigh tells me I’m not getting through. He speaks slowly, as though I’m the one not listening. “Those are not listed side effects of the medication,” he repeats.
I’m sorry. I had no idea I had to get my side effects approved. I must have missed that memo. I didn’t realise that if they weren’t on the list, they didn’t exist…
DR. I’ve-Always-Wanted-A-Guinea Pig
(but I’ll lie and tell you this is the standard treatment protocol)
“Here is the medication I think will work best for you. We use it all the time in cases like yours,” the doctor assures me.
I find out later that in order to use that medication, the doctor had to ring Canberra and ask for permission, promising them that we’d already tried all the standard ones. (He lied. We hadn’t tried any standard medications! And this medication was horrible to me. Vivid hallucinations, fatigue, memory loss…)
(and then I’ll refuse to let you have copies of your results)
“You can have the tests done here in our rooms – it’s much more comfortable and convenient for you,” this doctor tells me. I then proceed to have the test, and the doctor excitedly jumps around and says things like, “Wow! These are the most abnormal results I’ve ever seen!” But then he refuses to share the results with other doctors who are also treating me. Apparently, the test results belong to him because they’re done in his rooms. Pretty sure that’s not how it works…
But I ended up having to have the 24-hr sleep deprived EEG done again, in the hospital, in order to get the results for the doctors overseeing my care.
And you know what? No abnormal results.
(and you’re not one of them)
When she thinks that my diagnosis is in her area of special interest, she’s warm, compassionate and helpful. But when a test result shows that I’m not one of those she loves to study, she’s rude, abrupt, and can’t get me out of her office fast enough. She works in a large, metropolitan hospital. Does she know someone I could see about my condition, someone she could refer me to for future care? No. Could she maybe help me find someone I could see? No.
Okay then…back to square one.
DR. That-Will-Be-Three-Hundred-Dollars (for nothing)
He spends the appointment time casually swiveling back and forth on his chair, musing about how strange my case is, how odd my symptoms are, how my test results really don’t tell us much. At the end of the consultation, he’s offered me no help, but asks me to book in to see him again for a follow-up appointment in three months time. A follow-up of what? Who knows. I walk to the reception and am charged three hundred dollars. I find out later that this particular doctor drives a red Ferrari. I’m not surprised.
You have your past test results in a folder? In sections? You brought a written list of symptoms you need help managing? What do you mean you’re wondering if you can have test xyz done? Hold up, hold up, you were researching your condition? Reading an actual medical paper? I know I’m the doctor with hardly any clue about your disorder, but still, please! Remember your place! There will be no discussions of latest research, or useful tests for your condition in my office.
They tell us there’s really no treatment for our condition, because it’s too complex. If they were honest, these doctors would say: I’m sorry, you don’t fit into any of my neat little boxes. I don’t have the time/inclination for cases like yours.
My last doctor literally said to me, “And you can see here on the graph that this is where your heart stopped for 4 or 5 seconds. Right, well, if you don’t have any other questions. I don’t think I’ll need to see you again after this”. And I was like, “Wait, WHAT? My heart is STOPPING? And you’re not going to DO anything?” And he just said, “I’m sorry, but Dysautonomia cases are very complicated”.
After an appointment where I tearfully shared my concerns about the fact that my quality of life was steadily declining, and that I was becoming more and more limited in the things I could do, I received a letter in the mail from the same doctor.
“Treatment…lie flat and squeeze and relax the muscles of the lower limbs, to avoid loss of consciousness”.
Yes. On the occasions I am well enough to actually get out of bed, I can totally see how my quality of life will be improved by constantly lying down. In the supermarket. In the video store. In the middle of the footpath outside the chemist. The fact that I often get no warning before passing out, and so would have no idea when to lie down to avoid loss of consciousness? That’s irrelevant, apparently.
(but no treatment options)
A six hour round trip to a new clinic in the city boasting that it treats my condition. I get there and the doctor barely glances at the paperwork they had me to fill out beforehand (which took me over an hour to complete). He asks me to list my symptoms (which, again, are all listed in the ridiculously long paperwork). I explain, and he says yes, I definitely fit all the criteria. Unfortunately, they don’t have any treatment options at this time. But they do have fantastic newsletters available on their website. AMAZING newsletters. They might have some treatment options in a year…or in a few years. He’s not sure definitely when. But in the meantime, make sure to check out their INCREDIBLE newsletters.
I’ve come to the conclusion that doctors are like Bertie Bott’s Every Flavoured Jellybeans. There are kind, helpful, knowledgeable ones sprinkled throughout the box. They’re the cherry flavour, the apple flavor, the tart lemon flavour that you hope for. But those other doctors? You know they’re in there too. That is the reality that makes you reluctant to put your hand in again, as like Dumbledore you’ve had the misfortune to come across a vomit flavoured one before. And sometimes, like Dumbledore, you think that a nice toffee bean should be safe, only to try it and sigh and say, “Alas! Earwax.”
Have you met any of the unhelpful doctors above?
Are there any others that you think need to be added to the list?