For me, this week marks an odd anniversary. A year ago, I woke up one day extremely dizzy and exhausted. I had felt run down for months, and had done everything I could to try to shake it, including going on a massive health kick, cutting out sugar and refined carbs, exercising for hours a day, bordering on the obsessive about my collection of food and activity tracking apps. Despite losing 13kgs on doctor’s orders, I had been going back and back to that GP for months saying I thought something was wrong with me and that I was feeling worse. I was told that I just needed to keep losing weight, or perhaps to take some Gatorade with me when I exercised.

But this was a whole new level of exhaustion. And it was definitely not a Gatorade deficiency. I was now dizzy when walking. I was dizzy when I was sitting at my desk. The only time the dizziness subsided was when I was lying down. And by 3pm each day I was hit by crushing fatigue, so bad that I fell asleep on my desk more than once only to wake with colleagues poking me in the shoulder. Some days I just ended up crumpled on the floor.

Everything suddenly felt difficult. Going to the supermarket was tiring and noisy, an assault on the senses. Any repetitive activity, like chopping vegetables or washing dishes, left my muscles aching, even though at that point I was fitter than I had been in years. My brain would turn to mush hours before 5pm, and even trying to read books for pleasure in the evening was a slog. Basic household chores made the world swirl around to the point where I would start to lose my balance, and even light exercise would lead to hours-long naps.

“… the fatigue that affects ME/CFS patients is as different from regular, end-of-the-day tiredness as Ebola is from the common cold” — Meghan O’Rourke in the New Yorker

Initially, just like I did, doctors suspected it was some kind of virus, and said I should just rest and wait it out. I just hoped it would vanish as suddenly as it had arrived. But by the time the new year had rolled around and there was no improvement, I was shipped off for a barrage of tests.

They all came back saying I was perfectly healthy. I had never felt more unwell.

Doctors, like all of us really, do not like what they can’t explain. So when the tests came back clear, I was at times met with scepticism. One specialist implied that I was ‘just depressed’ without asking a single question about my mental health, others told me I just needed to lose more weight.

Eventually an immunologist bluntly told me: “I don’t know why your doctor has sent you to me, you clearly have chronic fatigue syndrome. If it hasn’t gone away in a year come back and I will send you to a psychologist”.

That was it. While I should have been relieved to have finally had a name for this strange beast that had taken away my health, a chronic fatigue syndrome diagnosis felt like being thrown in a medical wastebasket, with the added insult of suggesting that if I didn’t get better within a certain timeframe it must be in my head.