Medical Gaslighting: The Staff in the Emergency Department Were Neglectful
Nadine bravely shares how her story, casting a light on the impact COVID19 has had on our healthcare system.
I was sent home.
My son had noticed that the swelling in my leg was not normal. He was right - it had swollen beyond reasonable doubt. Whilst Complex Regional Pain Syndrome (CRPS) can result in inflammation, discomfort and excruciating pain, I knew within myself this was not a typical reaction. I had finally conceded to my son’s wishes and taken myself to the hospital. I went in alone while mum remained at home looking after my kids. It is an isolating experience to have to wait in the Emergency Department alone. No one is there holding your hand for support, no one is there to speak up on your behalf. No one was there to insist that despite not appearing to look unwell, I did need to be seen to, and in a manner of urgency!
I tried to do this alone, yet they sent me home anyway.
“…You are looking at a 12-18 hour wait at least before you will even be seen by a nurse for Panadol,” the triage nurse had informed me. I had already been waiting inside for six hours, all the time stressing that the pain and inflammation was something more severe. Sitting alone in the waiting room I looked around noticing all the patients coughing and wheezing for breath. Covid19 has forced a great divide, the positive cases against the negative cases, though in this case there were no barriers in place. No partitions separating the sick from the infected and for those immune compromised like me, not offered protection from an impending sense of doom.
I felt so stuck and so powerless; eventually, I took the nurses advice and went home. After all, apparently this was “…merely a CRPS pain flare,” though I can assure you now they did eat their words eventually. I want to scream now at all the occasions I have been forced to justify my pain’s existence, as if this has somehow been my fault! Believe it or not, it is not my goal in life to be glued to the couch, fuelled by a passion for watching life pass me by. I used to be active, I used to be slim and any weight gain is a direct result from the medication the healthcare professionals have put me on. To those medical practitioners, please refrain from explanations regarding my health decline as a result of poor lifestyle habits. Unfortunately, my statements frequently fall upon deaf ears; stressed out medical staff do not have the inclination to listen to such claims.
The days following their dismissal led to the discoloration of my leg, and also the doubling in size. I had developed a DVT (Deep Vein Thrombosis) that was getting worse as the days progressed, and unbeknown to me at the time, this was becoming more and more life threatening. I had developed May-Thurner Syndrome, which is a condition that affects two of the blood vessels that go into your leg. It can make you more likely to develop a DVT, which I did.
I called my GP, I had a headache that would not stop, and he did tell me to keep an eye on it. Four hours later the pain was still throbbing, only now there was also pain displayed across my abdomen in the form of horrific bruising. Chronic pain conditions are usually invisible, only this time there was a visual representation of the pain.
Upon originally calling for an ambulance prior to the first disappointing hospital visit, I was informed I would be waiting for hours if I needed an ambulance. Now, my GP was insisting that I be rushed to hospital. The medication I had received in ED had caused blood clots; they had to scan my head for bleeding within the brain from this medication I had been initially prescribed.
They managed to slow the process of the clotting, and even removed 90% of the clot from my leg. Though the clots in my lungs were unable to be treated, they put me on a combination of more medication. I was on two different types of blood thinners, ones associated with such fun side effects…
My hair was falling out – it was insane! Once I came home, I was making jokes about it all, I had to – laugh or cry right?
After the surgery to remove the clot from my leg, the following day the doctor came back into my room to inform me that once again, I would need to go back in for surgery. Like no, have I not been through enough? “…You are kidding me?” I said, but he was insistent. The next day he prepared me for the surgery, only this time I was to remain awake for the procedure. He informed me that despite needing to be awake, it was not a big deal. “…It will be like putting a stent in,” he explained.
Aside from the initial pain in my leg that almost killed me, this was the most painful thing I have ever experienced. My vein has so much scarring in it, what he was trying to do was excruciating – I was literally screaming from the pain! I have since had nightmares about this moment…
Afterwards, the doctor apologised profusely. He had not seen this coming, though in truth, there were no words for me to properly convey to him the extent to which this hurt. The blood thinners, the stress, the pain - the combination of the three left me with physical evidence of the pain – it was literally pouring out of my body through constant blood noses. The pain from this has also now become chronic. Today I still have pain in my abdomen and my lower back that I did not have before.
The doctor acknowledged that it was apparently very rare for this pain to linger, however due to my pre-existing, chronic pain, apparently for me it would. Going back in again, which I was going to have to do within the near future, would apparently rekindle this extreme level of pain too.
I am experiencing Post Traumatic Stress Disorder (PTSD) from this harrowing ordeal. I had a fear of going back for other treatments, and my ketamine infusions were all overdue. My GP was checking in with me on a weekly basis though. It took me four weeks after I had been discharged to even be able to walk into my GP clinic. It has not been easy at all; my daughter usually sleeps in my room with me, and it has been hard to hear from her that I have been screaming in my sleep.
As hard as this I want to make it known that yes, I acknowledge that COVID19 has had a huge impact on the medical system, but they can and should do more. This is not an excuse for neglect. When I needed to be admitted for surgery, I was told I had to wait for a place in the hospital because they had no spaces, due to needing to make room for COVID patients.
I pay for Hospital Cover with my Private Insurance, which they failed to check based upon their incorrect assumption. In the end my doctor corrected this mistake, and they then realised they could admit me immediately – I had been forced to endure extreme pain and a life threatening condition unnecessarily, due to negligence on their behalf.
“What meds are you chasing?” were the first words out of the nurse’s mouth, following the surgery. After everything I had been forced to endure as a direct result of their operations, she still said this in an accusatory manner, as if I had somehow created this situation merely to gain access to drugs. I am not a drug addict!
“…Excuse me? I have chronic pain in my legs, I have CRPS, and this pain is like a heart attack. I can’t take a breath, there is something wrong!”
You should not have to make official complaints for the treatment you receive at a hospital. The pain was crippling. All of these experiences have left my faith in the medical system absolutely flushed down the toilet. I do not know if my eyes have yet permanently rolled back into my head, or if they are slowly rolling back from all of these conversations about how I am obviously abusing opioids.
Fast forward a few months…
I went into the hospital on Friday, feeling fairly relaxed towards the prospect of my procedure. I had spoken to my anesthesiologist on Wednesday, and he was going to meet me pre theatre. When I went in however, everything changed. My surgeon insisted that I undergo this procedure awake, which I was not prepared to do. This new information was so distressing! Luckily, I had my anesthesiologist to advocate on my behalf, and I was put under.
When I awoke, I discovered they had removed my underwear. I was mortified! This had not been advised in the pre-op, and I was not feeling prepared for this. Apparently they had needed to go in through my groin, though this seemed strange to me. My pain levels were intense. I was attended to by a student, lacking supervision, who assisted with my movement to the bathroom. I stood up, immediately bleeding, and the student realised she could not handle the situation. “…I had better go get my supervising nurse,” she had said.
Later, upon awakening in extreme pain from the medication, I was made aware that it had only been an hour and a half following this interaction that I had spent in the recovery room. “…We’ve already dealt with you, you need to be quiet. There are other patients needing to rest right now,” I was callously informed by one of the nurses.
Feeling distraught, I then heard the pain specialist outside the door. “…Get her off the ward, she does not need to be here any longer, she’s done her 24 hours, get her off my ward.”
Luckily I had members within my care team who were able to advocate on my behalf. After all, I still required an iron infusion, and following the procedure, scans were necessary in order to check the placement of everything. These people could see that I was not well, they cared.
In an effort to feel normal amid a stressful situation, I left my room to go downstairs and meet my friend. Honestly, I needed the fresh air and the change of scenery – even if only for a brief moment. Unfortunately, I bumped into someone that I previously had been close to in the lift and she nearly bowled me over. My heart sank, I was already feeling vulnerable from the entirety of the situation and this made it so much worse. Heading back upstairs, I hoped nothing more would go wrong.
When I arrived back in my room, I was met with contempt. There had been a changeover in staff while I had been away, and despite not being overly busy, I was still ignored. My pain had spiked, yet no one would assist me. I was confused; there were only four people on my ward, and there seemed no plausible reason as to why no one was acknowledging my distress. Eventually they provided one mere pill, informing me that as I was being discharged tomorrow, I needed to “get over it.”
I was not ready to go home.
At 11:00 the next morning, the head nurse came in and informed me that I had twenty minutes to be out of the room. I had not even had the chance to yet change, which was something I really needed help with. Following a surgery, everyone is going to struggle a little with dressing themselves; where was the compassion? Have you ever attempted to remove your own cannula? Naturally, I would not recommend it, nor is it safe to do so. I was left to do this alone, and to pack up my things.
Again, where was the compassion?
Begging for access to one’s own medication should never be part of a post surgery practice. They refused to open the drawer and provide me with this, there was no paperwork for my release and I was told quite bluntly that I needed to wait for my family to collect me outside – it was so cold!
Imagine not being informed of the importance of wearing a compression tight, despite a medical history of having developed a DVT. They failed to advise me on the importance of elevating my leg; they would not even produce a ‘Stat Dec’ advising that my medication was still within the hospital.
Suddenly, my recovery was completely reliant on my GP’s ability to prescribe my medication earlier than my due date. Moreover, I have since attempted to make a complaint to the hospital as they had lost my script and were failing to rectify this situation, but I am unable to do so. Also, my GP had just gotten COVID, so that option was out. It is a bit of an impossible position, when you are deemed as a ‘complex patient,’ which loosely translates to being unable to make an appointment with a different doctor, and having the guarantee of another prescription.
“We do not bulk bill, so you will be charged and you may not receive the medication you are seeking.”
This struggle is one I know many of my friends also face; it simply is not fair!
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