I was married for two years when I was diagnosed with lupus. I was thirty-one at the time.
The lupus diagnosis came after eight years of mysterious symptoms and misdiagnoses. (In that respect, the diagnosis was a blessing.) It was not a shock. It finally gave me clarity on all the bizarre, seemingly coincidental medical issues I had experienced.
Lupus affects less than zero-point-one percent 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. (I always knew I was special.)
Lupus falls under the umbrella of autoimmune diseases. This is where the body starts attacking healthy cells, like a police officer who goes rogue and starts shooting civilians. Lupus can attack any organ in the body and is extremely hard to diagnose because it is random and unpredictable.
The body starts attacking healthy cells, like a police officer who starts shooting civilians.
I have been affected by lupus in many weird ways: vocal problems, dizziness, joint pain, heart issues, circulation problems, brain fog, ulcers and fatigue. Oh yes, and split nails. Weird, right?
One more thing. Lupus significantly increases the risk of miscarriage.
When my lupus specialist first told me about the miscarriage part, I played it down in my head. I don’t know why. I just assumed the increased risk meant it escalated from, say, one percent up to maybe five percent. No biggie.
Then my husband and I did some research. It turns out my particular brand of lupus is a reliable predictor of miscarriage or other problems during pregnancy.
My brand of lupus is a reliable predictor of miscarriage or other problems.
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 perceives embryos as foreign bodies and tries to kill them. (How nice.) It can also cause the mother problems, such as blood clots, strokes and heart attacks. (Awesome.)
We worked out the likelihood of my having a bad pregnancy was around fifty percent.
We felt this risk was way too high. My health was already suffering because of the lupus. 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 have children. It was a tough decision: simple, but not easy. We still feel the ongoing sadness about it. We feel the loss. But we believe it was the wisest course of action for us.
It was a tough decision – simple but not easy.
There are a few different types of childlessness classifications out there. I am not sure whether to classify myself as childless-not-by-choice, because we did make our own decision. But it felt rather like a case of forced choice if you ask me.
So I am coining my own term: Childless-By-Forced-Choice (CBFC). I wonder if there are others out there like me.
Do you have a story of CBFC? Or do you have a different story of childlessness? Share your story by commenting below – let’s have a countercultural conversation.