A snapshot of a pale-looking 36 year old white autistic gay man, wearing black-rimmed glasses and a yellow hoodie. The man's eyebrows are raised, his mouth closed in a diagonal-esque shape.

Monday 7th October 2024: Going to the Doctor – Again (one – no – two days late due to medical reasons)

Trigger warnings for mentions of serious diseases and medical incompetence.

Hi everyone,

Today, I’d like to focus on an experience we find ourselves in whenever we want to interact with the medical system: the blank stare.

I’ll explain. The reason I didn’t write a blog last week was simple: I couldn’t. A few days before, something weird happened with my throat. I felt some tissue close up over my windpipe, stopping me from breathing in or out, either via the nose or the mouth. Pretty bad, I think you’ll agree.

I’d also been dealing with exhaustion (of course, re. the Long Covid I wrote about two weeks ago) and increased wheeziness (re. Asthma). I’ve been waking up more in the night and sweating more while asleep. In short, I was getting overloaded and exhausted again. What a surprise.

The cure – me resting – was not as possible as you think it might have been. Instead just got very angry with my body not having recovered as it should have done, in the 5.5 hrs I laid out for it during the weekend. How lazy.

So on Saturday morning, I wake up at 6 am, convinced I’m going to die of prostate cancer.

Obviously.

The bad one

This is not the first time I’d been convinced I’d get cancer. It’s odd, though, my family is relatively free of cancer deaths, on both sides, so, genetically, I’ll probably keel over from something else entirely. Or I’ll just live forever, as Luke thinks I will.

The last time, back from late 2018 to early 2020, I was also convinced I was dying of cancer. Stomach cancer this time. Why? At certain points (of exhaustion) I would not be able to hold down food or water. This is obviously a problem. I went to A&E in Oxford, where I tried to explain what happened and that I was scared. The doctor who examined me didn’t see anything wrong and I started having a meltdown (the ‘hitting myself’-kind of meltdowns that are now, thankfully, very rare). Obviously, the doctor called security and I was held in a room with a member of the security team for 4 hours or so. The guy was very bored, as he didn’t think there was anything wrong with me. So I was let back into A&E.

Over several hours, I was examined a few more times, but still unable to hold down food or water. I ended up watching Theresa May’s first vote-of-no-confidence on a saline drip. By midnight, I was finally able to keep at least some water down and I was put in sole charge of trying to explain to a doctor what I thought was wrong with me: overload and exhaustion. Only then was I allowed to go home. I did not get a diagnosis from anyone at any point for the entire 9 hours I spent at A&E that day. Also, Theresa May stayed in office for the next few months. Hooray.

It didn’t stop though, it got worse over the year 2019. I was more tired, more overworked and more convinced I was morbidly obese even though I’d never been thinner and exercised compulsively (ah, those halcyon days!). Makes sense, I was practically doing two full-time jobs at the time, working for the NHS and teaching EFL, as well as falling in and out of relationships and just being worn down by all the people-ing I needed to do.

I had another check, in December 2019, which would be an endoscopy, in Witney, Oxfordshire. Endoscopy as in: tube through my throat into my stomach, not colonoscopy, which is, er, different.

I travelled there by bus (I wouldn’t have been able to do so with a colonoscopy – yeah I know I’ll stop). My friend and co-convenor of the Autism experience group Mike (hi Mike!) is a qualified nurse and promised me he would be my chaperone. This turned out to be a very good idea. I was given a spray that would numb the back of my throat, then a few minutes later my blood pressure plummeted. Mike supported me and was able to speak when I couldn’t. He also took my experience entirely seriously: I didn’t get dismissed by anyone that day. The word ‘anxiety’, a common previous “explanation” for what was going on with me, didn’t fall once. I did get my endoscopy rebooked, for 23rd March 2020. And what a day that was to choose!

My housemate had already gone home to Brazil, for obvious lockdown-related reasons. I was alone at home. Luke’s workplace, a shoe shop, had already shut for same obvious reasons, so he had time to wait for my endoscopy to finish. I wore an ‘I am autistic’ t-shirt, as a way to remind the anaesthesiologist to not go hog-wild on my endocrinal system. It didn’t matter, they gave me a little bit to make me a little woozy and I was knocked out.

I woke up from the operation and I therefore needed someone around me for at least 24 hours, as I’d lost consciousness. Luke was told I was now in his care and he needed to stay with me. Therefore, he came home and stayed at mine. That night, Boris Johnson declared a nationwide lockdown. Johnson was responsible for these two tank-top wearing bumboys moving in together.

If that joke offends you, google Boris Johnson tank-top. You’ll find out.

Back to now

So what about now? Ten days ago, I was doing an event for the Autistic Wellbeing Group I facilitate at Bath Spa University, when I felt like a bit of tissue from inside my throat was folding over my windpipe. No air could get in or out. It is, as you understand, quite distressing! The next morning, I wake up convinced I’m dying of prostate cancer. So, last week, I head to the doctor because I’m having these throat closing moments, as well as the fear of the big C.

I contacted 111 online, the NHS’s online system to get basic medical advice. Obviously the combination of what I was showing didn’t match exactly anything they could do anything about. I got a phone call from the pharmacist, who said I needed to get a doctor’s appointment, with relative urgency.

After work, I tried to get a doctor’s appointment, but, as had happened before, my local GP’s receptionist was very aggressive, instructing me to go back on the app to book an appointment later in the week, or on the website if that didn’t work. In the end, neither worked. I felt pretty horrific, even having a moment of my throat closing up in the pharmacy, who were worried I hadn’t been able to see the doctor yet. They told me to go back in and ask for a meeting today or tomorrow.

I was quite flappy, being sent from pillar to post. Luckily there was a member of staff who was a human being and heard me out. She made an appointment for me. I say ‘was a human being’, I think I was seen as a threat, being an autistic person who’s 6’4″ and is evidently getting a bit unsettled. I got an appointment the next day.

The doctor only had 10 minutes. We spoke at a rapid-fired pace, because there was literally no time to discuss anything in depth. He looked in my throat, said: “it’s just a bit reddish, that’s it.” Oh. That’s alright then! We booked blood tests and a general health check, where I’ll probably be told that I’m too fat (at least, that’s what my brain tells me). He couldn’t diagnose me with Long Covid because I couldn’t show a positive Covid test (I didn’t have any tests at the time I was ill). For my throat, he prescribed me Gaviscon and told me to come back if it’s still there in 2 months. Thank you bye!

Of course, my first instinct was to blame myself: ‘there’s nothing wrong with you, you’re just being pathetic/craving attention/haven’t got yourself under control.’ This self-hate spiral is as old as time. Of course, I was not taken seriously, because the GP had no time to do so. He is told to limit patient interactions because of a lack of doctors and too much demand on the few doctors that are there. It was unpleasant to see his face, not understanding what the hell I was there for.

But it can be different…

This past Monday, I had that blood test, as well as getting double-jabbed for Covid and Flu. Today (Tuesday, when I’m finally finishing this blog), I had an appointment booked at the Sexual Health service. Why? Because I take a medicine called PrEP, a drug that stops the spread of Hiv. I am not myself Hiv positive (I now can’t be), but I take it because I believe that the spread of Hiv needs to be ended. This is one way to contribute to that.

I had blood taken, I even had a test to look at my blood sugar, so we can rule out diabetes (consider it ruled out! The test showed no excess glucose, hooray!). The sexual health nurses actually have time to support me, it’s far more accessible than the regular GP service, because they are incentivised to actually take care of you, rather than get rid of people as the GP services are incentivised to do. They may not be trained on autism directly, but they are far more capable of treating an autistic person like a human being.

Today, as I started to get woozy when the nurse filled 2 vials of blood from my arm, I was allowed to lie down and slowly get back to myself. This is not something I dared at the GP surgery, biting my lip instead and getting out as soon as I could. At the SHC, I was able to take responsibility for my recovery myself. I did not feel confident I would be at the GP surgery.

In short, I have a lot less blood than I did 48 hours ago.

Be that as it may, I also spoke to my new therapist. He said: “Maybe, just maybe, your body is trying to tell you something.” He’s absolutely correct about that, unfortunately. I’m going to take it easy, as much as I can, for the rest of the month. Then I’ll have a full week off at the end of the month. Luke and I are going to Brighton for 5 days, but I won’t be taking my laptop or phone.

I hope you recognise how incredible this is for me. It’s a BIG deal. I don’t think I’ve been away from my email for more than about 48 hours since at least the mid-2000s.

Anyway, more on doctors another time.

JORIK MOL BOOK CLUB!

Funeral Games by Mary Renault
I finished the final part of Renault’s Alexander trilogy Monday night. There’s so much there that irritates me but also shows greatness as if from a mirror in another room. This was intentional on Renault’s part, with her complete deification of Alexander the Great. When he’s gone, there isn’t much left to cling on to, which reduces the reading experience to a ‘could’ve been’ situation. But would it have been better if Persian Boy ended earlier? I’m not too sure. (Spoilers, Alexander the Great died. 2500 years ago). More thoughts are developing, might write about my feelings regarding the entire trilogy later.

Hand in Hand with Love – An anthology of queer classic poetry Ed. by Simon Avery
This collection was a recent anniversary gift from a dear friend. Its greatest joy? To finally make me read poetry again. I’ve been reading Hardy, Whitman and Carpenter, as well as Wilde. Its issues: somehow placing Lord Alfred Douglas AKA Bosie on the same plane of poetic and intellectual value as Wilde. Bosie doesn’t deserve that, the fascist arsehole. As well as the odd selection of Catullus’ Latin edgelordery and Michael Field, the nom de plume of an incestuous late Victorian niece and aunt poet couple. By not engaging with Radclyffe Hall’s politics, too, there’s a serious blank in the introduction, that could have made this a better anthology than just picking poets who were a bit gay. There’s an obvious gap starting around the late 1930s, because nearly all work published after that date is still under copyright. But Avery’s recent selections (Audre Lorde, Thom Gunn, Roz Kaveney and Travis Alabanza) are uniformly fantastic. Still, why not call this an anthology of “classic queer poetry”? Very strange.

See you next time! xxx

J


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Categories Healthcare/Institutional Barriers/Medication/On Burnout/Uncategorized

Post Author: jorikmol

Professionally Autistic

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Jorik Mol - Professionally Autistic

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