Words by Shaylee King, they/them | Images by Suzy Lafosse
CW: Medical trauma, mental and physical illness, suicide, eating disorders
I would like to acknowledge and pay my respects to the Kaurna people, the traditional custodians of the land and waters of Tarndanya, on which I live and write on. I pay my respects to all elders, past, present and emerging. I acknowledge and pay respect to the Kaurna people’s cultural, spiritual, physical and emotional connection with their land, waters and community.
I am writing this from the perspective of a white person, so I understand I am already in a privileged position when it comes to health care, but I wanted to share some of my story, a history of constant medical rejection, trauma and medical injustice in the hope that it makes some people feel a little less alone.
My medical maltreatment story began at birth. It was very obvious that things weren’t quite “right”. Born with a completely dislocated knee, I was already on my way down the path of disability and chronic illness, it just wasn’t apparent yet. My family noticed the floppiness of my legs, urging the doctors to take notice which after days of nagging, they finally did. Upon physical examination, they told my family that there was nothing wrong with my hips because they didn’t click. The movement was fluid, so they determined my hip joints were perfectly normal, and didn’t require medical imaging. They told my family they just being paranoid, and to relax. Little did they know the reason my hips didn’t click, was because they were completely out of their socket, and formed that way due to Congenital Hip Dysplasia. The doctors sheepishly came into the room after receiving the medical imaging results, to tell my family that they were right, something was wrong, and they needed to fix it. I was in a hip brace for 12 weeks, 23 hours a day, until my hips recovered enough to stay in their sockets without assistance. This was the just start of a long life of medical injustice and scepticism from doctors and other medical professionals.
From what I can remember, things weren’t so bad when I was younger. The real issues started during primary school. Apart from frequent dislocations that were put down to joint hypermobility, my struggles with doctors and the medical system didn’t become apparent until my chronic pain started around 7/8 years old. My mother would take me to see GP’s, paediatricians and rheumatologists, who would do the standard testing for joint problems, mainly x-rays and ultrasounds. Which of course would come back normal due to there not being anything structurally wrong with my joints. I had slight scoliosis, hypermobility and congenital hip dysplasia, but that was it.
They would tell my parents that there was no actual problem, and that it was “growing pains”. By the time I was 9/10, the talk of me overreacting turned into full blown accusations from doctors that I was a hypochondriac. After a few more negative test results, my parents started to believe it too. Why is Shay having so many issues day to day, if all the results are coming back normal?!
I remember one appointment I had to look at my lower limbs. The doctor was too busy flirting with the student doctor that he wasn’t really interested in investigating what was going on. He told my mum there was nothing wrong, and after a 10 minute appointment, I was sent away.
By the time I reached my preteen/early teen years, my issues suddenly became more complex. I was lucky enough to start seeing a brilliant family GP, but I started struggling with my mental health, which in turn, exacerbated my physical health. I was diagnosed with Anorexia nervosa, Depression and Anxiety which blew up like a house on fire, making it difficult for anyone, including the doctors, to focus on my physical health issues. The goal was set of medical stability, which didn’t last long due to the effects of an eating disorder on a developing body. I remember during one of my admissions to hospital for medical stabilisation, I was eating my set menu like I had to, (because if I didn’t, I would’ve had extra “food” pushed through my Nasogastric Tube), and a doctor came in to review me. He posed the question; “So why can you eat in hospital but you can’t eat at home? Just eat at home and you won’t have to come to hospital?” Oh gastroenterologist, what do you think an eating disorder actually is? I had no choice but to eat in hospital, because the only way for me to leave was to eat. But suddenly I was posed with this question, and it ended up prolonging my stay in hospital. I was telling myself that I clearly had nothing wrong with me because I was eating, and by lengthening my stay due to refusal of intake, I used up more resources including a bed in the Adolescent ward of the hospital.
It was around this time that I gained awareness that the medical system wasn’t created for the chronically ill and disabled. I got stuck in a cycle of being admitted to hospital, and being moved between wards due to complex issues. I would be admitted for medical stabilisation for my eating disorder, then sent to the psychiatric ward for mental stabilisation, who would then send me back to the medical side to be stabilised. Medical, psych, medical, home, repeat. This made it very difficult to attend school, and I ended up having to leave to focus on my health and wellbeing.
My physical health began to deteriorate more and I began to experience more frequent subluxations and dislocations. I was diagnosed with postural orthostatic tachycardia syndrome, AKA POTS. I started to see more specialists, including a cardiologist and rheumatologist, who luckily took me more seriously than when I was a kid. I was able to convey my own experiences, and convince the doctors that something wasn’t right, as I was sick of doctors dismissing my case. I had a lot tell me my issues were due to being underweight, and that if I gained weight, everything would be better. (I’m heavier now, I can tell you that’s NOT the case… Nice try though.)
But I refused to give up. I was seeing multiple specialists a week to deal with my mental health, eating disorder and physical health, and it was so exhausting. But I refused to allow the doctors to push me around. Just because one test was negative, doesn’t mean that’s the end of testing. Luckily, my GP was persistent, and when I presented him with my knowledge on Ehlers Danlos Syndrome (EDS), he agreed I fit the criteria and referred me on.
Although my rheumatologist began our appointment by saying; “I’m going to be honest with you – I have no idea what Ehlers Danlos Syndrome is, so I’ve had to google it.”), he did agree with my GP, and referred me onwards to the genetics team to be tested for EDS. One thing my rheumatologist told my mother and I during an appointment one time, still makes me laugh to this day. He asked where my pain was, and after informing him that my pain was practically all over my body, (joints, muscles, organs, everywhere…), he told me that it was physically impossible to be in pain in more than two places at once. I figured arguing that “fact” with him was pointless, but my mum and I, (who also suffers from EDS symptoms), definitely laughed about it after the appointment. We know our bodies very well, and trust me Mr Rheumatologist – It’s possible to be in pain multiple places at once.
[CW: suicide, sexual assault]
During this time, my mental health was deteriorating further. I was diagnosed with PTSD and BPD, and tried to end my life on multiple occasions. The worst time happened after I recalled a past sexual assault that my brain blocked out. I barely remember what happened, but I had multiple organ failure. I was transferred from my local hospital emergency to ICU in a different hospital that was more equipped for my case. The one thing I do remember is a random doctor poking his head in. He asked me directly, if I agreed to be put on the transplant list. I wasn’t in the right frame of mind to answer at all. I was in and out of consciousness, on a lot of medication, and was very depressed. I hesitated, but reluctantly agreed. The doctors response was; “Well clearly you don’t actually want to kill yourself, otherwise you wouldn’t have agreed to an organ transplant.” Luckily after a while in ICU, and the cardiac ward, my liver and other organs began to recover and I didn’t require the transplant. But those words have stuck with me to this day, and still make me feel less deserving of being alive.
Medical help became stagnant after a while. Whilst waiting to see the genetics team, I tried to focus on other things like mental health recovery. I entered an in-hospital eating disorder program to attempt recovery from my eating disorder. One nurse though, decided she wasn’t a fan of me, and proceeded to tell me that I make everyone else feel miserable because I’m so depressed and sad all the time. That I need to smile and just cheer up because I’m making everyone’s time harder by not doing so. How dare I be depressed! How dare I have a rough time and not be a ray of sunshine every single day. The other patients assured me that I wasn’t being an awful human being, and that I was just depressed which was okay. But it was way too late. That nurse had made me feel like I was the worst person alive and that I shouldn’t have the privilege of staying in hospital. So I ended up leaving before I was supposed to.
I have many more of these stories, I just chose to include the things that have stuck with me the most. The words that have made me feel so much less deserving of help and support. I hope that my stories have made you feel a little less alone in the messy world that is being chronically ill. And to the health professionals reading, I hope you take something from this. I hope you read these situations and think about how your actions impact your patients.