Happy new year. Or, rather, as happy a year as possible at the moment. We’re all learning to manage our expectations.
This week’s blog is focussed once again on the pandemic, it’s about being ill. If you haven’t read it: Virginia Woolf’s On Being Ill is an amazing essay I first read in 2012, after having been in a psychiatric ward for about two weeks. I used it to write my final essay for a course on modernist literature, whilst on benzodiazepines. It’s freely available online.
In the meantime, since the end of last year, both me and my partner have gotten sick and recovered.
He’s been struggling with an ear ache that turned out to be an ear infection. On the 30th, he spoke to the GP, who prescribed a double antibiotics cure: amoxicillin and an antibiotic spray. I collected them from the pharmacy the day after. On the 31st, after a workout, I started feeling under the weather myself. I over-ate and then spent hours on the internet, trying to keep myself from falling asleep before midnight.
I hate being ill. It comes from growing up autistic, my partner has the same issue. Because we were autistic children, we were often exhausted due to sensory overload and the social mess of school. In both our cases, we would be told to go to school, however tired we were. For me, I would develop migraines and catch colds, just so my brain would have time to recuperate. I remember many days where I’d have to argue my way out of going to school. Especially my first primary school, where I was bullied and I hated going to. It wasn’t the learning I hated, it was the breaktimes. I would have meltdowns and physically hit myself for having them. I would have sensory overload on a daily basis. Food became my way of retrieving the energy I burned through between 8:00 and 15:30 every weekday. I was ill often, which my parents reacted to with frustration. I just needed to keep going to school, no ifs, no buts.
My body responded with a variety of health problems. I developed asthma as I gained weight, which intensified when I became a teenager. My mother fought fire with fire, giving me vitamin C effervescent tablets. That gave me a shot of sugar that I would burn through by the time I got to school. I would still fall ill with alarming regularity. I missed a lot of school as a result. Because of my mother’s doubts, I started mistrusting my own body: “Are you really sick or are you just pretending?” – that question hit hard. As I struggle to access my own body and am prone to disbelieve it when illness hits, somehow I learned that I need to be the one in control of my body. If not, I feel like a failure.
When I woke up on January 1st, I applied for a few jobs and felt increasingly awful. I’d had a terrible night’s sleep. So had my partner. I’d developed a dry cough and my sense of taste and smell had diminished. I’d looked up the symptoms of Covid-19 and did the questionnaire on the NHS website. I was still feeling ok, just had a mild cold. Yet I didn’t want to take any chances. After discussing it, we decided to self-isolate and order a test kit. Since this is Britain, and I’m writing on January 3rd, we’re still waiting and I don’t expect to receive anything until the 6th at the earliest. That means that if we both test positive, we’ll be stuck here till the 14th at least. Neither of us likes that, but we both chose the flat we moved to as we could “see ourselves happily quarantine here”. Now, here we are.
Friday was essentially ok. I still have the dry cough and a mild temperature, but I’m not too affected. I was able to order shopping in for Monday and managed to read for the rest of the day. It’s weird that I have the patience for reading that I didn’t have in 2020 now. I couldn’t focus on video games, but could on books. That’s a victory. My partner had had a weird Thursday. He started the antibiotics and felt stoned for most of the day. He even had a meltdown, expressed through rage. His clumsiness was worse, he had lower impulse control (he broke the curtain rail in my room) and he couldn’t exercise. He wasn’t even aware how much he was affected, due to problems reading his own body. On Friday, he was miserable. He was in severe pain and had had a terrible night’s sleep. He was worried how bad it would get and what would happen. I was able to remind him to take his medication and additional paracetamol.
The next day, yesterday, was better for him. He is coming through the worst of it and was able to express joy rather than just sit behind the computer and try to not feel too much pain. He’s slowly getting better. The problem is that initially, he didn’t feel like that his pain wasn’t necessary to call the doctor for. When he phoned, the automatic phone system told him that he shouldn’t contact them unless it was an emergency. Since he wasn’t actually on death’s door, he nearly hung up. I had to push him to stay on the phone, we’d done the 111 online questionnaire and he needed to speak to the doctor. Worse, the operator at the GP practice was less than welcoming and misunderstood his initial request, so he had to repeat it. These messages made him feel awkward and guilty for asking for help when he needed it. The fact the doctor gave him a double (!) dose of antibiotics is indicative of how much he needed it. I needed to explain that if untreated, an ear infection can spread wider, causing – at worst – sepsis or encephalitis.
If you’ve been told that your body’s pain doesn’t matter or isn’t real – even with the best of intentions – you start to believe it. This leads to people not asking for help when they need it. For medical professionals, that behaviour is actually helpful; less work for them. But there are more people within the NHS who are starting to understand that excluding people from healthcare is not the way forward.
All of this is made worse by living in a society that doesn’t value or understand our specific responses to illness. I have seen articles defending the idea that disabled, learning disabled and neurodivergent people need to be vaccinated first, as a way to combat worsening inequalities. I agree wholeheartedly. Because health care is aimed towards what health care workers assume to be the mean, the specific issues we face are not catered to. Even worse, medical science doesn’t even know how we are impacted by, for instance, different medicinal treatments. I am on the steering committee of the very first medication trial on autistic people. We’re living in 2021. This is both offensive and ridiculous, but at least we finally have something. I often have to explain this to newly diagnosed autistics: no, the healthcare we need and we are legally obliged to receive doesn’t exist yet.
It is clear, though, that autistic people are far more likely to die during routine medical procedure. Personally, I have had issues with anaesthetics throughout my life (see more: https://jorikmol.com/autistic-in-times-of-covid-19-monday-1st-june-2020-reduction-3-autistic-bodies-1/ ) and I hope to see more research on this topic soon. Many of us die because there is no research as to why is this happening and how to prevent it. It is not just an issue for the autistic community – though intensified with each layer of discriminated-against identity. Women’s health, the health of queer people and people of Colour are under-researched and undervalued (see for an entry-level explanation: https://www.youtube.com/watch?v=CVdn-2KE2bs ).
The term ‘accidental death’ is used when medical professionals give overdoses (often of anti-psychotics) to autistic patients that result in their deaths. They can – and often do – use the defence that they were giving the right amount of medication for the issue, according to their training and medical science and, as by chance, the patient just died on them. They’re not wrong. The problem doesn’t lie with individual practitioners, but with a health system and a society in dire need of a paradigm shift.
Yesterday, I was feeling like shit. I couldn’t focus, I could read but not much else. I was worried about Long Covid – just having reduced quietiapine, I didn’t want to lose the energy that I just regained. I was worried about sickness, potentially having to go to the hospital and dying because I’m misunderstood. I was feeling bleak about not hearing back from potential employers and agents, without realising that I was in the middle of a three-day weekend and that no-one will have done anything over the past two weeks. It got so far as getting snappy at my partner for what I perceived to be slights against me. I couldn’t construct a cogent argument and I was more uncoordinated than usual. I was worried about being stuck inside and counting down the days until I could go out. I don’t think I’ve got Covid, just a cold I caught when my partner’s amoxicillin cure made him contagious again.
Again, a problem here is with temporality and realism. Like Camilla Pang, as discussed in her book Explaining Humans, I don’t have a “realism filter”. She writes about seeing a motivational poster on the Underground saying “Anything could happen” but interprets that as “I could die right now!” and gets into a panic-induced negative thought spiral. That made me feel seen. I’d like to add that this ‘realism filter’ is, in my understanding, a sense of one’s experiences falling within a field of likelihood, a bell curve. That curve contains the likely experiences one might have on a normal day. But, this itself is a form of privilege. If you live a life where your experiences are defined by your neurodivergence – usually negatively – you don’t deny the possibility of hugely negative things happening to you without warning. We are often called ‘dramatic’ for that by the neurotypicals in our lives. It’s not dramatic, it’s our lived experience. Once our lives are no longer impacted by unexpected cruelty and lack of understanding, then you can call us dramatic.
I was stuck in a moment where I felt vulnerable. I didn’t know what was going to happen. I don’t like not-knowing. I have never had Covid before. I don’t even know if I have it. I want to not be affected negatively, so I do everything I can not to be negatively affected. If I do have Covid, will I be negatively affected anyway? Yes. That feels humongously unfair to me. If I can’t control my body, as I was told I should many many times as a child – “Stop saying that you’re sick, you’re not. You’re just being dramatic. Just be more positive and feel better,” – then I’m failing in some way. If illness is just me not working hard enough, then I should be punished for not working hard enough if I continue to be ill.
Is that thought pattern healthy? Absolutely not. Since Thursday, my intention has been to just listen to my body and do as it tells. But last night, I was in a state of exhaustion. I needed solitude and a book. Instead I was asking questions to my partner – the funniest of which was: “Will I become a racist now?” My argument was: our grandparents’ generation used the deprivation they faced during the second world war as an excuse for racist beliefs and actions. Why wouldn’t I? My partner rightly laughed at me and sent Dennis Sunflower into my body in a micro-pod to save me from the virus. I asked what Dennis was doing inside my lungs; he apparently did a Native American healing dance. “Oh God, I have become racist!” I cried. We both laughed.
I needed solitude and reading. I also had a much-needed shower. My partner read a few Donald Barthelme stories to me and I had another early night. I’ll keep you updated about Covid tests and isolation.
Lots of love,
P.S. This year, my friend Tiffany has been writing a blog about dating as an autistic adult, it is incredible. No spoilers, but good things are afoot! https://www.loveautistic.com/ is the address.
P.S.S. I’m reading Explaining Humans. It’s genius, buy it so Camilla can keep being incredible on the page to the benefit of all. <3 <3 <3
P.S.S.S. Here’s a picture of myself and a certain Mr. D. Sunflower: