I had been married for two years when I was diagnosed with lupus. I was thirty-one years old at the time. My husband and I had decided to enjoy our time together before making any hurried decisions about family. Our deadline was to make a decision by the time I turned thirty-five.
The lupus diagnosis came after about eight years of strange symptoms and misdiagnoses. In that respect, it was a blessing. It finally gave me clarity on all the bizarre, seemingly coincidental medical issues I had experienced.
Lupus affects less than 0.1% of the Australian population. It typically strikes women of childbearing age, that is, between eighteen and forty-four years old. It is classified as a rare disease, and as such, it is poorly understood. Little is known about its causes and even less about its treatment.
Lupus falls under the umbrella of autoimmune diseases. This means the body turns on itself and starts attacking healthy cells, like a police officer going rogue and starting to shoot civilians. Lupus can attack any organ in the body and is incredibly hard to spot and to diagnose because it looks so different from person to person.
I have been affected by Lupus in many weird and wonderful ways: vocal problems, dizziness, joint pain, heart issues, circulation problems, brain fog, ulcers and fatigue. Oh the fatigue. I feel tired every day, some days worse than others.
One more thing. Lupus has significantly raised my risk of miscarriage.
When the doctor first told me about the miscarriage part, I played it down in my head. I don’t know why but for some reason I minimised it. Then we did some research. It turns out my particular brand of Lupus is a reliable predictor of miscarriage or other problems during pregnancy.
For “other problems”, read stillbirth, deformities to the child such as growth retardation, or having a child with lifelong high needs such as Downs syndrome. Apparently, Lupus interprets embryos as foreign bodies and tries to kill them. It can also cause the mother problems, such as blood clots, strokes and heart attacks. We worked out that my likelihood of having a bad pregnancy was around 50%.
Some people would not be put off by this. They would take the risk anyway. But not us. We felt this risk was way too high. My health was already suffering; we did not feel we could care for a high-needs child on top of that.
And so we decided not to pursue having children. It was a tough decision; simple, but not easy. We felt, and still feel, the ongoing sadness about it. We feel the deep loss in making this choice. But we believe it was the wisest course of action.
I am not sure whether to classify myself as childless not by choice, because after all, we did make our own decision. But it felt rather like a case of forced choice if you ask me.