*From my personal Facebook page just prior to Christmas 2016, the anniversary of one of the worst experiences of my life and the impetus to get a few things off my chest*
Less than an hour ago I felt I like my heart was trying to escape my chest for four very unpleasant beats. I’ve had palpitations plenty of times before but this was different. Called Nurse on Call, they told me to go straight to ER.
I’m more afraid of ER than I am of having a heart attack.
So we called my Dr, who also works rurally in ER a few times a year aside from consulting with patients like me, he answered his personal mobile phone after 9:30pm and at no expense to me explained the reason for what I experienced and why, crucially, it was benign. Once we were reassured, he wished us a Merry Christmas and told us to contact him throughout the holidays if we need anything.
Plenty of Lyme deniers call Drs who choose to treat this illness charlatans or opportunists. My Dr is neither of these things. I trust him with my life. My trust is not easily won. He chooses to work with some of the most complicated, maligned ‘heart sink’ patients in the face of significant professional opposition not for money (I’ve heard him take a call while I’m in the office and arrange to personally cover the costs of a patient’s scan), certainly not for glory (there is none in this field) – but because he cares.
He’s bloody smart too and keeps his cool in a crisis. When I came home from my 3rd trip to ER at the start of the year feeling like my body was shutting down and being told I have psychiatric problems, I wasn’t sure how I could keep living. It was torture, but torture the medical personnel I encountered at hospital told me I was somehow conjuring in my own mind. That’s a colossal headfuck. Just imagine feeling sicker than you’ve ever felt, terrified and at your most vulnerable ( more than you even knew was possible) and then being told by the medical staff entrusted to your care that you’re crazy and not nicely, but with condescension and amusement.
When I got home my Dr spoke with me for over an hour, explaining why my body was convulsing uncontrollably, why I felt too weak to remain upright, why? Sure enough once we started treating properly (I’d been on a hiatus due to surgery in the preceding weeks) this calmed down enough for us to be able to make the impending move interstate. A move we were making to be closer to support networks as it became abundantly obvious that this bloody illness was digging its claws deeper into me and we couldn’t manage on our own anymore.
As brilliant as my Dr is, it shouldn’t be this way. No patient should feel afraid to visit ER. No person should be mocked for presenting to ER, especially when they are courteous, cooperative and genuinely ill. I was in tears telling the staff, as they looked at me bemused “I’m not trying to waste your time” – it didn’t matter what I said, their minds were made up.
It didn’t matter that I was genuinely ill and my blood tests proved it, because I mentioned Lyme upon admission, anything I said thereafter meant nothing. I must be crazy. In fact I had low potassium – I needed to be in hospital but when they took the next step and cannulated my hand and ran IV potassium into my veins they left it undiluted (not proper procedure). When I complained that it burned like acid (which it is known to do) they tossed me out.
I now take potassium pills 3 times a day and I rely more on a phone call to my Lyme Dr than I ever would on ER. Experience has conditioned me to be this way – and it’s wrong. I wish I could trust the system but my last experience nearly broke me and I don’t think I could do it again.
Maybe I’d have a better experience if I ended up in ER again the next time but from what I hear from others sick like me, this is the norm. In fact the senate submissions on Lyme-Like illness are filled with stories like mine.
All manor of crazy torturous symptoms are wreaking havoc in bodies across this nation and people are genuinely suffering but they’re not going to hospital because they’ve had the same experience: if you go and mention the ‘L’ word it’s a surefire way to be labelled a nutcase and then be faced paradoxically with the challenge of not becoming one as a result of basically being unwittingly gaslighted. Unwittingly because these staff believe they’re right, how could they not when they’re working off the information and training they’re given and it’s sorely lacking. When you find yourself really sick with something unrecognised it’s a terrifying place to exist. I never thought it possible to live like this.
A few months back my arms were so weak that they effectively became paralysed and I could not move them. Someone could have put a cigarette out on my forearm and I could not have stopped it. I started sobbing. We called an ambulance and even then when i didn’t know why my arms had stopped working I refused to go to hospital. I’m not saying this to try and illustrate how brave I am, I didn’t feel brave, I’m trying to illustrate how extreme my fear of ER is – it is worse than losing the capacity to move my arms, it is worse than my heart bursting out of my chest, it is worse than uncontrollably convulsing. To date all of these extreme bodily experiences have abated in time but on some level I am always vigilant, I can never completely relax treading this fine line between experiencing more horror than I thought possible whilst simultaneously deciding whether or not to seek help through our medical system.
I know the science on tick-borne illness isn’t conclusive yet but from what I can tell the clients mum sees through her work (injecting drug users) are treated with more compassion and courtesy than those of us with tick illness. I believe drug users deserve that courtesy but so do we, everyone does. I understand compassion fatigue, and fatigue in general, are common in an ER setting but, fuck, if I could switch bodies for a second with treating staff it would solve a whole host of problems in an instant.
My mind isn’t the problem, my threshold for fear and pain is much higher now to the extent that when I had my port placed surgically and they couldn’t cannulate my hand (shit veins) they had to administer the anaesthesia via needle directly into my neck. So that’s like the needle at the dentist but in your throat. I didn’t flinch or react at all, I’ve trained myself to be accustomed to so much more than that but the surgeon joked “you’re so relaxed maybe we don’t need the anaesthetic”. I wasn’t relaxed, I was controlled and this self-control is largely what keeps me going.
But we all have our breaking points and for me that’s feeling like I’m dying and being told I’m putting it on.
I look forward to the day when it isn’t like this for Lyme patients. I look forward to the day when we can finally get past the ridiculous assumption that people presenting with this illness are somehow complicit in their own suffering, that they *want* it for some perverse reason. Live a day in our skin and you’ll learn exactly how absurd that notion is.
If you’re on the fence, just consider, if we’re telling the truth and this disease is real and as devastating as 1000s of people say it is, *if* we’re right, what a phenomenal shame that is. What a stain on the integrity of our medical institutions. To leave a large group of people genuinely suffering through no fault of their own to fend for themselves, and when they seek out help, to treat them like trash. When the cogs do click into place, and the balance of social perception tips (as it inevitably will one way or another because this is real, it’s just a matter of time) in favour of patients as all the missing puzzle pieces come together, the shame will be real. And I can promise you, it will not be patients feeling it.