Hello Lupus,

In October 2011, I was diagnosed with you. I was 43 years old at the time, and up to that moment I had lived a life of pain and fatigue and mysterious symptoms that seemed to arise from a dozen different diseases. I was, I admit, tired and defeated at that point in my life. Tired of doctors. Tired of physiotherapists. Tired of supplements and over-the-counter painkillers and creams and anti-histamine tablets and straps and braces and long, long sleepless nights. Tired of punishing headaches that stole hours and days of my life. Tired, most of all, of apologising to friends and loved-ones for limitations I didn’t understand.

In October 2011 that changed.

Driving home from the Rheumatologist’s office that day, I said your name over and over in my head: “I have Lupus. I have Lupus. I have Lupus.” Over and over, trying to fit this new thing into my life through sheer force of will. “I… have… Lupus!

I feel oddly ashamed today, as I write this a few months later, that my first reaction was relief. Elation, even. I learned about you and I thought: “Yes! Finally! A name! I know your name!

You see, much of my life I’ve wanted to know your name. I knew you were there. I knew you existed, but I didn’t know what to call you. I privately tried to give you all the names I could think of — chronic fatigue, sleep apnoea, fibromyalgia, Multiple Sclerosis, Ross River Fever, Arthritis. I went for test after frustrating test. I tried to describe what you were doing to me with words that couldn’t convey how odd and sinister the symptoms felt. It wasn’t just back pain, it was back pain that felt like I was slowly burning inside. It wasn’t simply being tired, it was being tired so suddenly that it felt like being attacked by something lunging out of an alleyway; swift and brutal.

It was you I was trying to describe, Lupus, and now I know your name.

With your name I learn about who you are, how you behave, what to expect from you. I can connect with others all over the world who are resisting you every day. I can learn your secrets. I can help to bring you out into the sunlight you despise [1].

With your name I own you in the same way you have owned me for years and years and years.

With your name, I can join the fight.

You have been in my life for many years, but in a way, in the last few months, I have only just begun to learn about you.

So, yes, hello Lupus.

We meet again. For the very first time.

[1]. People with Lupus are often photosensitive, which means they must avoid sources of UV radiation, including sunlight.

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