So, a while back I was diagnosed with complex post-traumatic stress disorder. C-PTSD is a category of PTSD that tends to develop due to prolonged or repeated exposures to the traumatising events or situations, often situations that are perceived as inescapable or unavoidable, and, along with the “classic” symptoms of PTSD, presents with emotional dysregulation, negative self-belief, and interpersonal difficulties. It’s not uncommon in survivors of childhood abuse, trafficking, family violence, and people displaced by war; it’s also not uncommon in people exposed to traumatic material or repeated experiences of helplessness or powerlessness. The diagnosis was developed as a way of explaining and understanding the differences in the way we respond to traumas when they’re experienced as single events versus repeated events. It’s not a “more serious” or “more severe” form of PTSD, just a different presentation.
In my case, one of the main factors in my development of CPTSD was being chronically ill from a young age, and then certain specific incidents over the years. My family was great about it, but you can’t get around the fact that diabetes changes your life, and I was in hospital a lot. I had very poor control as a child and a teenager. Being in hospital is isolating, and it takes away almost every bit of control you have. There’s no privacy about anything. Things were a little better at Westmead Children’s, but I think it says something that most of my few memories of childhood are of being in hospital, and not the nicer parts. (More on the lack of memories in a bit.) One of the more distinct ones is being in a mixed room and having a nurse talking about my period while I was all too aware of the male patient across the room; I think I was about fourteen. I’m not mad at the nurse. It’s just an example of how you lose your privacy so easily, through nobody’s fault.
Medically-triggered CPTSD isn’t uncommon in people with chronic illness, especially those of us who also happen to be fat and/or female, two demographics who often get downplayed when it comes to our health. And, unfortunately, by virtue of the very thing that puts us in the position to develop CPTSD in the first place, we’re vulnerable to re-traumatisation. You can’t avoid your triggers when you need them to not die. So it becomes a very vicious cycle.
As I said, my particular cycle probably started germinating when I was ten and got diagnosed with diabetes. Having to stay in hospital is scary; you’re away from your family, and it’s not an environment that’s conducive to soothing feelings. It’s bright and unfamiliar and there are weird noises all the time and the food is strange. Jokes about hospital food aside, even if it’s good, it’s still unfamiliar, and it’s usually not good; adequate at best. The bed isn’t your bed. And you’re very, very aware that your parents aren’t there. It’s not that I was afraid of the nurses; it’s just that I knew my mum and dad were a half-hour train ride away. That’s a long time fir a ten-year-old.
I was never bothered by the injections. But “you’re a bad diabetic” haunted me. Other kids thinking I was weird or gross haunted me, because even back then I cared way too much about what other people thought about me. I was an anxious child who wanted everyone to like me, and I didn’t like getting “bad” attention. So having to leave class half an hour before lunch every day to go to the office to take my insulin (where I’m not sure they kept it in a fridge, now that I think about it)? Not my favourite thing to do. I did it, but I hated it. And when I got to high school and had yo take an entire afternoon off to go to my endocrinologist because there was only one bus from the school to the train station and it came at midday, I hated that too. It got me the “bad” attention. It got me one of the other girls lying about having diabetes too “so [I] wouldn’t feel like suck a freak”. It got rumours spread that I was on drugs when someone saw me giving myself insulin.
Adolescence was when doctors began to tell me things were because of my weight. I was overweight, but my endocrinologist at the time was unwilling to look into any reasons why beyond “you eat too much”, and while I undoubtedly had a bad diet, bad diet alone never accounted for my weight problems, as we know now. When I was about fourteen I was referred to a “weight loss clinic” for adolescents with weight problems. It was, again, a program that meant I had to leave school for the afternoon. My first session, a group session, they told us to take our usual portions and divide them in half, without asking us what our usual portions were. I had had four years of diabetes educators hammering into me that I must eat forty-five grams of carbohydrate at every meal and fifteen for a snack three times a day, before factoring in protein and vegetables. This was a time before “bolus for your meal”; conventional wisdom was take a set bolus and eat to that dose.
Conflicting instructions. A few years later, I’d been hospitalised for diabetic ketoacidosis several times, my weight had not shifted, and my relationship with food had gone down the toilet. I still don’t know what an appropriate portion looks like. But now, at least, I can bolus for what I eat rather than the other way around. Diabetes education has come a heck of a long way in the twenty-eight years since I was diagnosed.
Returning to the CPTSD, I can point to a few distinct events. The repeated hospitalisations during my adolescence certainly didn’t help, although no one of them individually stands out. The first really bad hospitalisation was actually nothing to do with my diabetes. It was when I was twenty-five, and I thought I’d hurt a muscle in my back somehow. My back had been hurting for a week or so and I couldn’t figure out why, but it wasn’t too bad. And suddenly, one day I couldn’t breathe.
Turns out I had a blood clot in my lung, and a clotting disorder. That led to a week-long stay in hospital, one of the scariest times in my life until recently. I couldn’t inhale properly for over 24 hours. My oxygen saturation was so low that my fingernails were blue. I had to get scans on my legs to make sure I didn’t have any more clots forming in them, twice-daily blood tests to ensure that my clotting factor was where it should be, and confirming that I had a disorder and it wasn’t just a fluke caused by recent travel (I had two risk factors for acute thrombosis, being female and fat, but none of the others, so chronic was deemed more likely) meant that I was going to need lifelong medication of a sort that is contraindicated with nearly everything else and renders you invalid for blood donation by virtue of being rat poison.
You know what I remember most clearly? They didn’t have a scale on the ward that could handle my weight (180kg back then) so they took me down to the loading dock and weighed me on the freight scale there. The one that goes up to a tonne and is for weighing pallets. The one that’s outside and built into the concrete.
In 2021 I was hospitalised again, this time for a cellulitis infection that turned into sepsis. They still didn’t have a scale that could cope with my weight. The nurses on the ward had never seen an insulin pump before and didn’t seem to know much about diabetes – when I had a hypoglycaemic episode one night, I had to specify what I wanted them to bring me to treat it, I.e. something with sugar to bring my levels up and some simple carbohydrate to keep me from spiking and crashing. The nurse asked if I had any food I could use. I’d been there for three days and hadn’t left the ward; where did she think I’d got food from? I didn’t feel super comfortable with them giving me my medications after that, but that’s how hospitals work; they take your meds and hand them out to you. Even if you’ve been self-managing for years, you’re suddenly in a position where someone else is In Charge. And in my case, it was someone fundamentally misunderstanding one of my conditions.
My most recent hospitalisation, while a net positive, has also been a source of a lot of re-traumatisation. I’d got sick enough to need a lot of assistance, and that’s difficult enough coming from loved ones; for me, at least, it was even harder in a hospital setting, especially because some of the nurses… well, they didn’t respond the best. I understand that they’re understaffed and busy, but I don’t think that justifies scolding a patient for using the nurse call button in the bathroom because she had the bad luck to use it during shift change, which she didn’t realise was happening. When a patient is upset because a wound has been mismanaged badly enough to become infected, accusing them of wanting you to change the past isn’t helpful, especially when all they really wanted was an acknowledgement of the fuck-up that led to the infection and that it shouldn’t have been on them, immediately post-procedure, to remind the nurses to clean and change the wound dressing. Staff on the endocrine ward should know the difference between type 1 and type 2 diabetes, and if they’re told “no, it’s fine for me to keep my pump running while my blood sugars are 6, it’s not going to give me insulin if that would make me go low”, they should possibly listen to the diabetic who has been using the pump for ten years and let her sleep instead of waking her up every ten minutes and telling her that she needs to turn her pump off so she doesn’t go low because she’s not eating because it’s four am.
Those were little things, but still things that bothered me. The big thing is the helplessness, though. You already feel bad because you’re sick, but you have to give up all semblance of control. I had to hand over my very complicated medication regimen, and then they’d give me medication four times a day, often with changed doses that I wasn’t informed of until my doctor team came around the next day. The only medication I had control over was my insulin, because none of them had ever seen a pump before. The software they use to keep track of their dispensing doesn’t even have a way of indicating a continuous bolus the way a pump administers insulin; they had to enter that I was using a vial of insulin every couple of days and manually note that I was putting it in a pump. It didn’t make me feel super confident about the rest of my medication.
But beyond the medication, there’s just… mannerisms. It’s bad enough being sick; there’s a certain type of nurse who has two modes when it comes to female patients. If they’re above a certain age, they get treated like Grandma. If they’re below that age, they get treated like children.
The nurse means well. They’re trying to be comforting. But I’m a thirty-seven-year-old woman. It’s bad enough that I need help bathing; I don’t need to be called “bub” and told “nice and clean” like I’m a toddler.
And they still didn’t have a scale that could handle my weight. More than a decade later, it was still the outside freight scale and feeling like a piece of livestock, not a human.
These may all seem like small things. And maybe taken in isolation they are. But they happen over and over, over twenty-eight years and counting of being progressively more and more chronically unwell, and they add up. And now I have recurring nightmares set in hospitals, where I’m sick but nobody knows why, or I’m sick but there’s no room for me, or it’s my fault so they’re not going to help, or any number of similar scenarios. Sometimes I don’t remember the dreams, just that they were in a hospital and that I wake up knowing I had a bad dream.
And that’s a thing about CPTSD – it messes with your memory. I didn’t have a particularly traumatic childhood as these things go – my family was great, and I don’t have any big traumas that people think of when they hear this sort of thing. I was bullied pretty consistently at school, but again, as these things go, it could have been a lot worse. I was isolated and weird; nothing was ever physical. My biggest enemy was my own physical and mental health.
And yet, I have almost no memories of childhood or most of my adolescence. I have intellectual knowledge of certain events, like I read someone’s recounting of them, but no emotional attachment to them, and no real snapshot representation of them. The few things that I do remember rather than “know” are particularly strongly emotional events, most of them negative. Not all. Some are wonderful: My first roleplaying convention game ever (we walked into a murder! We screamed!). The time I realised I loved freeforms, thanks to a wonderful writer and her Castle Falkenstein freeform where I got to play a silver-eyed elf who was really anamnediac human adventurer under a spell. She was very patient with teenage me declaring I wanted to turn her freeform into a story.
[Content warning in following section: suicide, sexual assault]
Some, though, are not so wonderful. Going to school one day and finding out that an acquaintance had killed herself that morning. Getting a lift home from karaoke from the very much adult friend of a friend who then attempted to kiss me, then sixteen, in the car, the first and last time anyone showed an interest in me (outside of one drunken party make-out) until the Engineer. The song that another student in primary school made up that was, in its entirety, “Penny yucko, Penny yuck” over and over. Little snapshots in a blank that doesn’t really begin to coalesce until well into my twenties.
And that’s partly why identity can be so hard for me. We’re made up of our experiences and memories, so who are we when we don’t recall, or when our recall is imperfect? Similarly, so much of my sense of body-self is wrapped up in the broken, malfunctioning thing that is the body I’ve been saddled with; how can I possibly tease out what’s illness and what’s identity? What’s the line between sexuality and symptoms? I have no libido, it hurts to be touched, and I dislike having sexual characteristics; am I asexual because of those things, or bisexual in spite of them? Am I cis with dysmorphia, or trans with no ideal gender? How much of my discomfort with my body is because of how many things are wrong with it? Is my memory gone because of trauma – and I do have pretty much all the textbook symptoms if CPTSD; my psych was pretty comfortable in his diagnosis, even with me going “is my stuff enough trauma for that?” – or is there a physical reason for it, like there’s been a physical reason for so much other stuff going wrong with me? (Probably not. I probably do actually have CPTSD, and also it’s super common for people with conditions like this to wonder if they’re faking it, because it makes us hate ourselves.)
Anyway. Like most of my posts, I have no snappy ending. Identity is a bitch. Trauma is also a bitch. But so am I, and I’m a bigger bitch, so identity and trauma better watch their backs.
The Medical Snowflake Diaries 