I'm Not Scared to Die, but I am Terrified of Losing My Battle to Lupus

In my family, death is not a topic of taboo; we speak both incredibly openly and comfortably about the subject. By the time I was only 3 years old, my family had lost three of four grandparents, all to health-related issues. From a young age, my parents have been very vocal about dying with dignity and what their wishes are following their passing. Being chronically ill, this openness and transparency mean that I’m not uncomfortable with the fact of death – I can admit that I’m not scared to die.

Being diagnosed with a chronic illness at 20 meant being forced to confront my mortality much sooner than most people. It meant acknowledging that living is only a temporary state of being and inevitably it will one day come to an end, possibly even sooner than I’d once envisioned. But with all that I have already achieved so far, if it were my time tomorrow, I could leave this earth feeling content and extremely proud of the life I have led.

I’m not scared to die. But I am constantly terrified of losing this battle to lupus. That may be confusing, as for most people, they ultimately amount to the exact same thing. Yet, for me, there is a distinct difference.

Dying itself is a basic fact of life. When I acknowledged my mortality, I gradually grew to accept and be comfortable with it. I’ve long been certain of what I want at my passing: to give back to the world any way my physical form possibly can.

As soon as I was of legal age, I registered to be an organ donor. Right now, this sits even closer to my heart than it did at my time of registration, as I know just how likely it will be that I’ll one day need a kidney transplant. But due to lupus and the courses of long-term medication that I take, I’m unsure whether my organs would still be eligible for donation.

If my organs aren’t healthy enough to be given to someone in desperate need of a transplant, my family will donate my body to science. By donating my body to science, I’ll be giving back to the Australian medical community – a community to which I am indebted, as it’s by their grace that I’m still alive today. As incredibly optimistic as it might be, my hope is that by giving myself to the future doctors and medical staff of the world, maybe, just maybe, I’ll have helped them inch just that much closer to a cure for lupus.

I’m terrified of losing to lupus because I know what it’s likely to entail: a slow, painful and frustrating deterioration of the life I know and love. I’m terrified of the tsunamis of fatigue, as even now these little ripples dictate my day. I’m terrified of the brain fog because my mind is by far my most favorite part of me, and the idea of regularly struggling cognitively absolutely crushes me. I’m terrified of the joint and muscle pain, fevers, headaches, and the long list of other symptoms that go with this dreaded disease. I’m terrified of it all because I know it’s coming for me. It’s only a matter of time, and there’s nothing I can do to stop it.

I’m not scared to die, as I know that the decisions I make for my body right now mean that my struggle will never be in vain. When I leave this place, I know one of two things will happen. Either my organs will give renewed hope and maybe life to another soul in need, or my body will be used for research. Research that I hope means someone else diagnosed with lupus at 20 — someone just like me — one day just might get to say the word “cure” instead of “remission.”