When I first began to suspect that my intermittent, worsening bouts of illness might be the individual heads of one sinister, hydra-like illness, I came to a horrifying realisation: I’d have to see a doctor. It was May 2017. By then I could trace a clear pattern of symptoms back at least six months. But because the mystery illness had crept up on me so vaguely, I had no accurate idea of when it really began. Perhaps mid-2016, or even earlier.
My previous experiences with doctors hadn’t inspired a lot of faith in the medical community. Luckily by this time I’d found a doctor who wore clean, moderately professional clothes and had not yet laughed at me.
My first visit to the doctor about my mystery condition was in June 2017. My main symptom was random days of extreme fatigue, the kind that prevents you from working or moving or even thinking much. I also had random headaches that may or may not have been related.
I acknowledged my symptoms didn’t give the doctor a lot to work with. Dutifully, she tested me for everything. She sent me for an MRI. She sent me for a full-body CT scan. She sent me for blood tests for every condition it’s possible to test blood for.
When I showed up at the lab with the doctor’s list of requested blood tests, the technician looked over the list and began collecting empty vials. When she had filled a bucket with vials, she held it up to me.
‘We’re going to take this much blood today. Is that okay?’
I blinked. ‘If you think I have that much spare blood, go for it.’
None of these blood tests turned up anything except the need for more blood tests. On paper I looked very healthy, but by that time, the fatigue had transitioned from part-time to full-time. I was struggling through even basic activities, such as chewing and breathing.
One of my referrals was to an immunologist. Suspecting allergies could be contributing to my symptoms, he suggested I spend several hundred dollars to allow a nurse to scratch a pattern of tiny wounds down my arm, and then dab allergic substances into those wounds. These substances were stored in brown bottles. I watched as the nurse unscrewed the cap on each bottle and dripped its contents onto my arm. One of the bottles was labelled cockroach.
‘People can be allergic to cockroaches?’
‘It’s actually pretty common.’
‘But what can you do if you’re allergic to cockroaches?’
She shrugged. ‘Don’t eat them.’
The immunologist visit was a solid reminder of why I do not trust doctors, especially when my scratch wounds revealed I was ‘mildly allergic’ to various grasses and pollens (thankfully I could eat all the cockroaches I wanted). The immunologist recommended I take an antihistamine.
‘What, just, forever?’ I asked.
‘Try it for a month and see if it helps.’
I went to my local chemist and asked the pharmacist on staff what antihistamine she recommended.
‘They’re all basically the same,’ she said in a harried, distant manner, as though asking her about the products in her pharmacy was an inconvenience she was struggling to tolerate. She pointed to a random box. ‘These ones are cheaper.’
I bought a box of antihistamines. Inside the box, the product information was folded into a tiny origami fan. The potential side effects of the antihistamines included fatigue and headaches. Still, who was I to question the advice of an experienced immunologist?
I took the antihistamines. My headaches got worse. I stopped taking the antihistamines.
After six months of tests and specialist appointments and weekly doctor visits, I eventually received a diagnosis by default.