Forced Choice

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.

We were not to know we would never reach that deadline.

The lupus diagnosis came after about eight years of strange symptoms and misdiagnoses. In that respect, the diagnosis was a blessing. It finally gave me clarity on all the bizarre, seemingly coincidental medical issues I had experienced. I did some research on lupus and found some interesting results.

The diagnosis was a blessing. It finally gave me clarity.

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.

Technically speaking, 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 shooting civilians. Lupus can attack any organ in the body and is extremely hard to spot and diagnose because it looks incredibly 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. It can strike at any time and appears to have a mind of its own.

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%.

Lupus interprets embryos as foreign bodies and tries to kill them.

Some people would not be put off by this. They would contemplate the 50% chance and take the risk anyway. But not us. We felt this risk was way too high. My health was already suffering; I experienced daily pain and fatigue; 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 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.

Do you have a story of forced choice? Do you know anyone who is childless due to medical issues? Share your story – let’s have a countercultural conversation.

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