A Complaint.

I’d been in intense pain since Thursday, to the point where I’d had difficulty standing up to get to the bathroom.

I’d been delaying self care — showering, preparing food and getting water — due to the pain level. I hadn’t sat up much since Thursday night. I was dehydrated.

My breathing was far shallower than usual. I had chest pain. My fingers were swollen to the point the cuticles had detached from the nail beds.

I’ve been in pain on and off for five years — and acutely for the last two. But the last few days had been horrifically bad.

Friends texted me repeatedly saying I needed to get assistance. But I didn’t want to go to hospital. You see, my experience of attending the emergency room has often been belittling and patronising. I’ve experienced rude behaviour from staff and false assumptions leading to poor outcomes.

It’s a common experience due to medical bias that I’ve sadly come to expect. You see, I’m fat, nearly forty and female.

I arrived at hospital by taxi at approximately 8:35pm on Sunday night. It was a busy night, with lots of people waiting in the triage area.

After being seen by the attending triage nurse, I waited for an hour and a half, slumped awkwardly over a seat. I was in excruciating pain.

At 10:23pm — nearly two hours after first arriving — I was unable to stand the joint pain any longer. I slid to the floor and curled up. I was not emotional, simply in pain and unable to sit for longer. After approximately 20 minutes I asked another patient to please let triage staff know.

A nurse came over to me and while standing over me angrily stated I was a trip hazard and I might catch something from the floor. She did not ask what was wrong. I agreed I was a trip hazard and said I needed help standing up. She huffed and stomped away.

Another nurse came over and said I could have pain medication if I sat up. I said I needed help to sit up. She went away and took the pain medication away with her.

They were holding out pain medication like a carrot for compliancy I had no desire to take: I needed a diagnosis and treatment.

You see, I’ve been offered strong pain medication repeatedly over the years and it is not a solution to managing my long-term chronic pain.

Due to various hospital administrations' eagerness to send me home at all costs, I have strong pain medication at home. I don’t use it.

My experience is hospitals are always over-eager to exit a complex patient without diagnosis. The way they do this is with the offer of a fistful of pain medication — but a full life cannot really be lived while drugged to the frigging eye-balls.

While I lay on the floor I tweeted about what was going on. I wanted to have a voice during the experience. Nurses definitely didn’t seem to be hearing me, but friends online did.

Alex Bhathal — a well known political candidate — arrived after midnight to advocate for me. As soon as Alex appeared as my advocate, a young doctor arrived and once again told me to stand up. I repeated again I couldn’t.

Alex then asked the doctor for time to try to figure out what physical movement I actually had and to work out some options. The doctor sneered at her, then disappeared. A male nurse returned and attempted to argue with me in the tone generally reserved for a badly behaved toddler. He was short with me. His expression lacked any trace of compassion or kindness.

I said he didn’t understand and queried if he’d ever had chronic pain. He shot back that he understood my pain because he had back pain and he couldn’t lift me. He said it in a way that was dismissive of my personal experience of pain and referenced my weight.

He never asked me what my pain level was like. He said he could get a machine to lift me or he could get a wheel chair and frame to let me pull myself up. I agreed to the second option.

Eventually the nurses found a wheelchair, but did not provide me with a frame to assist me to pull myself up again. The nurses did not assist me to the wheelchair. Alex Bhathal helped me to stand up to get into the wheelchair.

I was admitted to E.R. at approximately 12:15pm. Alex Bhathal then went home.

It was incredibly busy in E.R., with lots of buzzers going off and patients screaming.

I heard nurses repeatedly say to each other how busy it was, that they’d never seen it so busy. I knew they were short staffed — I could hear them asking each other to cover tasks.

I knew that they were short on basic things like pillows, because they kept asking each other if they’d seen any lately.

I didn’t ask for anything, let alone a pillow. I did not press the buzzer, despite being in constant, excruciating pain.

Eventually a nurse arrived to take a blood sample. She left the rubber tubing connected to the needle in my arm draped over a drawer’s edge. There were alarms going off around the ward.

The nurse was trying to hurry. She was distracted. She slammed the drawer shut. The needle in my arm — inserted into my vein — was instantly ripped out and blood went everywhere. The nurse swore. It hadn’t hurt badly. The nurse was full of remorse, apologising sincerely, immediately. I’m pretty sure she felt worse than me about it. I accepted her apology instantly and felt relieved — out of everything that had happened to me so far in the hospital that evening, she was the only staff member I felt had genuinely shown me care and concern. I could see she was utterly overworked and really upset the incident had occurred.

I was sent for chest X-rays. It wasn’t explained why I needed a chest x-ray. The orderly pushing the bed to the X-ray ward talked about how busy it was. I guess he was just trying to make friendly chit chat. So I told him I’d been left on the floor in E.R. “Don’t be silly, nobody gets left on the floor for hours,” he said angrily.

I needed a way to end the conversation and since we were at the X-ray room the quickest way seemed to be to thank him:

“Ok, look, thanks for your help,” I said.

“Don’t you be rude,” he responded.

Then he turned to the radiographer and said “Here she is,” and poked my right upper arm for absolutely no clinical or professional purpose. I responded with “don’t touch me.” Obviously he caught the note in my voice and yelled at me: “DON’T YOU BE RUDE! I’LL REPORT YOU!”

By the time I got back to my cubicle from x-ray, the nurse in charge of the ward and the male nurse from triage (the one who’d spoken to me earlier as if I was a toddler) were in my cubicle.

The male nurse from triage sprang into a diatribe attempting to excuse for his earlier behaviour and tone. I asked him to please leave unless he was either treating me or apologising. He kept making excuses. I put my head in my hands. He left.

The other nurse in charge of the ward then apologised. I reiterated that I just wanted treatment and wasn’t interested in the excuses.

The nurse claimed pain medication couldn’t be given lying down and that’s why they’d wanted me to get up. I pointed there were other options for administering pain medication to patients who could not manage to sit or stand up — and that administering pain medication might have helped me to be able to stand unassisted to get to a wheelchair. The nurse did not disagree with me. She apologised again. She left.

So I stayed very quiet for the rest of the time I was in the E.R. I didn’t press my buzzer, request anything or ask complicated questions.

The next nurse who saw me arranged for me to be transferred to a Short Stay Unit to see their Rheumatology team.

I reminded the nurse I was supposed to be taking antibiotics for skin infection and that I’d now missed a scheduled dose. She got the packet from my bag, gave me a tablet and left the packet in the corner of the room on the bench. I asked her for the packet back and she returned it.

She explained to the orderly that I couldn’t walk well or stand for more than short periods of time, but I’d be fine to pivot to the bed.

The orderly parked the bed out in the hall and told me I should stand up and walk a number of metres to the bed. I asked why he couldn’t put the trundle bed in the cubicle so I could swivel to the new bed. He couldn’t understand me — his language comprehension skills were lacking.

The nurse in charge of the short stay unit then came out into the hallway where I was parked on the trolley and said “It’s good for you to walk!” I responded “Good for me or good for you? Have you read my notes before giving that advice?” She suddenly looked at the orderly and asked why the bed couldn’t be placed next to the Short Stay Unit bed. And then the orderly moved the bed those few metres to allow me to swivel to the bed.

I cried for a bit then once the nurses and orderly left my cubicle.

I didn’t want to smile or make nice small-talk with the staff. Everything about my interaction with the nurses so far had felt adversarial.

My new nurse came in to see me in Short Stay Unit. “We are having a bad start,” she said. I agreed. I didn’t feel like making friends with her.

Breakfast arrived. It was left at the end of my bed — out of reach — and contained gluten and fructose. I didn’t eat it.

A patient wandered into my cubicle and told me how sorry she was about how the nurses had treated me in triage, said she’d seen it all happen — and that she was appalled about how I’d been treated by the nurses. She also took the time to mention how great her Pentecostal Church was. I should point out — I’m a Buddhist of Jewish heritage. Eventually she wandered out of my cubicle.

The Rheumatology team arrived later in the morning and noted I looked dehydrated. I’d had one glass of water since 5:30pm Sunday. The Rheumatology team got me a glass of water.

The Rheumatology team confirmed it wasn’t “all in my head” and that something was going on: most likely tonsillitis on top of an undiagnosed autoimmune condition causing inflammation, with a secondary pain flare due to Central Sensitisation Syndrome as the result of long-term untreated pain from the primary undiagnosed condition.

Ehlers-Danlos Syndrom — one of the conditions the rheumatology team suspects and is testing me for — has a median diagnostic lag time of 17.5 years. Yes, you read that read: 17.5 years. It mainly effects women.

The Rheumatology team also tested for other auto-immune conditions, including Rheumatoid Arthritis, Sjögren’s Syndrome and Hereditary Angiodema (HAE) Type I & II. Those results will take weeks to return.

Rheumatoid arthritis has a diagnosis wait lag of multiple months. Sjögren’s Syndrome has an average diagnostic wait lag of six years. HAE has an average diagnostic wait lag of eight years.

All the things these conditions have in common is they effect far more women than men — and the wait time for diagnosis is on average often many years or decades long.

And remember: the median diagnostic lag time is for your average patient. Not a patient who is non-white, remote, non-english speaking, non-neurotypical, with intellectual disabilities or facing psycho-social challenges. So the diagnostic lag would probably be much, much worse for anyone who isn’t “average.”

Let me just tell you right now: I will not be waiting a decade or two to get diagnosed. This is probably going to make me be considered a pushy bitch by a bunch of people in the medical system.

My experience has forced me to choose between caring what people think of me and my quality of life. It’s forced me to be very public when I am usually intensely private when it comes to medical issues. I’m choosing my life.

Anyway, back to the hospital experience: the Rhuematology team also said I’d be referred for genetic testing. They ordered an X-ray of my hips and hands to check for arthritis and said they’d return at approximately 3pm to consult again. The Rheumatology team said they wanted me to avoid prednisone, due to the effect steroids could have on my weight. They also said the hospital would arrange for me to see a physiotherapist and arrange for walking aids.

A nutritionist came by and confirmed that I’d receive a gluten-free, fructose-free meal at lunch.

The dermatologist arrived. Suddenly a nurse arrived, interrupted the consult and offered me pain relief. She gave me the tablets without water. The dermatologist looked concerned and said “…that’s gotta hurt,” as I swallowed the medication without water.

The dermatologist then took a skin biopsy under local anaesthetic to check for psoriasis. She prescribed a steroid-based cream for a suspected psoriasis rash on my arms and legs.

Lunch time came and went. I didn’t receive lunch. I heard other patients receiving lunch. I hadn’t seen a nurse since 1pm. It was now after 3pm. I’d only had a very limited amount of water since 5:30pm the day before. I’d been given an anti-inflammatory that was supposed to be taken with food. It was now late Monday afternoon. I hadn’t eaten since Sunday afternoon.

I pressed the buzzer and told the nurse I hadn’t received lunch or water, and that I wanted to speak to the patient liaison officer. While the patient liaison officer was on his way, the nurse suddenly appeared with two large paper jugs of water. She offered me endone, the first time I’d been offered it since I arrived. I declined it.

The nurse explained that she and the other nurse had covered each other while at lunch, and that’s why I hadn’t seen either of them for two hours. I assume this meant I’d been deprioritised as a patient to the extent that I’d missed the second meal of the day while my nurses took their lunch break.

While I was waiting for the patient liaison officer to arrive, I checked my Twitter app. I’d been tweeting about the hospital experience and most people online were pretty upset about the way I’d been treated.

However I could see a tweet from one man claiming to be the husband of a nurse at the hospital I was attending. He stated his wife had told him I’d complained so much they’d almost called a “code grey” on me.

If that highly-unlikely claim had actually come from a nurse’s husband, it would have been a health privacy breach. Also, I hadn’t hit my buzzer at all while in E.R. or called out to attract the attention of a nurse once.

The patient liaison arrived with a nurse manager I hadn’t met before.

The nurse manager told me how sorry the nurse was who’d accidentally ripped the cord out of my arm and what a “nice guy” the male nurse in triage actually was. I told her I didn’t care how nice he was, he’d talked to me in a rude way and they’d left me on the floor for almost two hours.

The nurse manager didn’t explain her role in attending my consultancy with the patient liaison, but from her tone I assumed she was there to advocate for her staff, not me.

I told her I didn’t want to hear excuses about why I’d been left on the floor. I told them that I harboured no ill feelings towards the nurse who’d made a mistake during blood collection and I felt that she was completely overworked — but I was definitely unhappy about being left on the triage floor for nearly two hours and being spoken to in a patronising manner by the male nurse while I was in triage.

I explained about the lack of water, missing lunch, the orderly who’d demanded I walk to the bed, the other orderly who’d poked my arm and yelled at me… and all the other bits and pieces that had made for a really unpleasant and unsafe experience of being in hospital.

The patient liaison listened to me, apologised and took a photo of the tweet to investigate for a potential privacy breach. The patient liaison told me I could follow up in writing and shook my hand at the end of the meeting.

The nurse arranged lunch. It was now after 4pm. The meal contained one gluten free ham sandwich and a red jelly cup. I felt nauseous from pain killers I’d just been administered. I didn’t eat it.

The rheumatology team had previously told me they’d be back around 3pm and that I’d have X-rays done before they arrived. X-rays were not done before they arrived.

Arranging to be exited also did not go smoothly. I was still in pain, though groggy from pain medication. I’d been given tramadol twice that afternoon, something I hadn’t taken for over six months. My fingers were still swollen and walking was still incredibly painful.

The prescription script from the dermatologist was not written up.

I declined an offer of a cab voucher that my nurse told me had been left for me by the nurse manager who’d sat in on the complaint I’d made with the patient liaison officer — it felt like a bribe after the experience I’d had over the last day in hospital.

As I was getting dressed to leave the hospital and being handed discharge notes, dinner arrived on the ward.

After leaving the hospital I realised I’d never been seen by the hospital’s physiotherapist and assessed for a walking aid, as per the instructions of the rheumatology team. There was no referral to a physiotherapist in my exit documents.

The next day I went to a local pharmacy to get the scripts filled. The total monthly cost for the medicines the hospital had decided to trial me on was estimated to come to $158 p/month based on the quote from my local pharmacy. One script required a compounding pharmacy. I got half the scripts filled and began calling around to find a compounding pharmacy.

At home today I rang the patient liaison number to try to figure out why physiotherapy and assessment for a walking aid had not been arranged, as per the request from the Rheumatology Team. I got an answering machine that told me my call would be responded to within 48 hours. No one has called back.

I feel shaky at times about how I’d been treated. Dehumanised.

But I’d already known this would likely be the experience before I went in. I’d expected it. I’d psychologically prepared myself for it.

I am female, nearly forty and fat, with an undiagnosed primary condition layered with a secondary chronic pain condition.

My illness is mostly invisible. A rash hidden under my sleeves and swollen bright red fingers.

I am further along in the diagnostic process. I have a good GP who works with me. I can advocate for myself. I compartmentalise the experience of medical abuse.

But I wish the process of engaging with the public health system wasn’t adversarial in a way that endangers patients. Nurses are pitted against patients in a race for time and process completion. The judgements being made about patients are based less on clinical observations than biases.

One random person tweeted at me: “If you’re well enough to tweet, you’re well enough to stand up.” This is simply not the case. I also refuse to cease being engaged in self-advocacy – and also the quest to enjoy my life, no matter how ill I am. I shouldn’t need to be broken in every way possible to “deserve” treatment.

One doctor at another hospital tweeted at me that I’d “Twitter shamed over worked, under resourced staff and now they’re going to get ripped to bits by management.” Maybe he was right – clearly how I’d been treated was something worth being ashamed about. But his lack of compassion was stunning. He’d picked a side, and he was clearly on the side of staff, not the patient left lying on the floor for nearly two hours.

I’d never named the staff or the hospital.

We shouldn’t have to pick sides between patients and staff well-being.

Patients should get timely, best practice care. Medical staff should have their rights at work respected.

Dehumanising patients, deprioritizing patients, inflicting medical bias on patients — all of this leads to outcomes that increase the wait time on diagnosis and create poor patient prognosis.

Bureaucracies that reduce their patients or medical staff to demands of process completion in wholly unachievable time frames ultimately dehumanises both staff and patients.

The point of writing this is not to rip nurses to pieces. They’re under inhumane strain. They’re being made to chose between their own livelihood and the well-being of their patients. And that’s coming at a cost to both their patients and their own well-being in the workplace.

I expect the unions to fight for better conditions for nurses and medical staff. They deserve and desperately need better rights at work. And I’m happy to support their union’s efforts.

Meanwhile, I’m still seeking diagnosis. I’m still in pain. So I’ll keep advocating for myself, writing about the experience — and complaining until I get better care.

Here’s to hopefully getting a diagnosis in the next few months — not in a decade or so.

UPDATE:

I was exited from the Short Stay Unit on Monday evening. On Wednesday morning I had an appointment with a rheumatologist – a friend on Twitter had taken the time to pass on details of my symptoms to her father, a rheumatologist, and he’d agreed to bulk bill me.

He’d consulted with one of the hospital rheumatologists who’d seen me on Monday.

He diagnosed Ehlers-Danlos Syndrome.

EDS has an average diagnostic lag time of 17.5 years. I got my diagnosis in 5 years.