It has only been recently that I have realised just how much I now mistrust doctors, and how little faith I have in the medical system.
I am the worst kind of patient. I spend hours trawling through medical journals before appointments, comparing random control trials. It must be the researcher in me. I project my point of view in a fairly assertive manner. I am not afraid to ask for what I want. I am not afraid to offer my view on the treatment protocol and dosage. I don’t want to be told “you’re fine”, or “you’re not fine”. I want to be given print outs from all my tests and all my procedures and given my exact blood levels so I can determine for myself my exact level of “fineness”.
I, with absolutely no medical training, believe I know more than doctors about my body and mind. And I really wish I could dampen this line of thinking. I wish I could trust the people that are responsible for my care. I wish I didn’t question every damn aspect of my treatment.
But you see, my past experiences have made me this way. Over the years I have had to learn how to navigate the medical system. I am used to having to fight tooth and nail for the treatment I need. I expect to be dismissed. I expect to be turned away. I expect to be denied treatment. So I arrive at each appointment on the defence and ready for battle.
Amongst other nitwitish behaviour, I have had the privilege of doctors telling me that:
– I was just a new mother who needed a bit of sleep. Actually I was psychotic and suicidal, and had just spent 45 minutes describing my symptoms in detail to the doctor. My baby was seven months old and had been sleeping through the night for at least five of them. A week later I was admitted to a mother and baby unit where I was kept for 2 months. The hospital told me I was one of the worst cases they had seen.
– That I had a case of gastro, and perhaps some endometriosis pain. I was actually in agony due to my autoimmune disease. And when I say agony, I mean that I had to be tanked up on IV morphine. I feel this instance is partially forgivable since my disease is so incredibly rare. But surely the fact that I was screaming in pain and had to be administered morphine was a clue that this wasn’t a case of “normal” gastro, and warranted further investigation.
– When admitted to the psychiatric ward, I was initially refused treatment for my autoimmune disease. Apparently, despite having a formal diagnosis from biopsy results from another doctor, and despite my diagnostic doctor giving explicit written instructions on the type and dosage of medication I needed, my 25 year old registrar didn’t believe my condition existed as she hadn’t heard of it. Bitch, please. My specialist with decades of experience hadn’t heard of it until recently. And despite the fact that I consider myself a reasonably intelligent person I highly doubt I could fabricate such an elaborate diagnosis involving the infiltration of certain white blood cells.
– as a psychiatric inpatient, my gastroenterology team continually avoided seeing me. My nurses called them repeatedly. It was made abundantly clear that I was their least priority. I dunno. Maybe I smelled?
– as an inpatient my surgical team repeatedly prepped me for the surgery and procedures I needed, before cancelling at the last minute. I understand hospitals are busy places and things get bumped. But I was an inpatient at that hospital for 9 weeks, and each time I was told I was at the top of the list. To this day I am not sure why I wasn’t given the treatment I needed and why I eventually had to be referred to entirely different hospital to receive it. And how that hospital managed to conduct the surgery on the day and time they said they would.
– I was explicitly denied nutritional treatment because I was a psychiatric patient. Even though my autoimmune disease is heavily related to diet. They did tell me that if I were on a medical ward I could receive the treatment. Which didn’t improve the situation. Or my attitude towards them.
– I was left in severe pain, for eight hours, because an the on call doctor basically couldn’t be bothered to come down to the psych ward. When he did arrive the next morning it eventuated that I was actually extremely ill, and was rushed off for an emergency CT scan. Not a hypochondriac after all!
I believe the core of the problem was that I was a psychiatric patient.
When you are a psychiatric patient you lose your voice. You lose your power. You are considered to be “crazy”. I was in a no win situation where I was given poor and sometimes downright neglectful medical treatment, but if I tried to object I was seen as over reacting, or causing trouble. I was “not in my right mind” after all. What the hell do I know? If I objected,I was medicated, because that’s what happens in psychiatric wards. And if I objected to that I was threatened with injections and security guards. I was silenced.
This would not happen to someone with a physical illness, and a physical illness only.
I often feel sorry for my newer doctors today. The ones who have done nothing wrong. The ones who are incredibly helpful and supportive. The ones who listen to me. The ones who are being punished for the actions of others.
But there is just this large part of me that refuses to hand over my trust to them. I NEED to be in control over my care. I never want to be in the powerless situation I was last year.
I just have this overwhelming feeling that to ensure my own wellbeing I need to keep fighting these Dungeons and Doctors.