Steph Penny
I faced tough questions when I was diagnosed with lupus. It came with a blood disorder (two for the price of one—common with lupus) that drastically increased the risk of blood clots. This made miscarriage and other problems during pregnancy far more likely.
My reaction to this news was ‘Yikes.’
I couldn’t deal with it. The risks were too high. I made the horrible decision to remain childless.
It didn’t feel like much of a choice, though. It felt like lupus had backed me into a corner in a prison cell and the only possible way out was to concede defeat. It was a forced-choice, gun-to-my-head situation.
I will never know what might have happened had I tried to have children, which raises questions for me about what others would have done in my shoes. I wonder if you might make the same choice if you were diagnosed with lupus? Would you try to have a baby if the risk of miscarriage was terrifyingly high? What if there was a risk of deformities to the child? What if the baby might come out with missing limbs? What if you might give birth to a lifelong high-needs child? What if being pregnant poses massive medical risk to you personally? What if you already struggle to manage your own chronic illness or disability?
I don’t know about you, but these questions freaked me out. Especially when I already struggled with pain, fatigue and unpredictable symptoms on a daily basis. Getting pregnant felt like the wrong thing to do to myself and the child, both physically and morally. And so I opted out.
Since making this life-altering decision, I’ve discovered I’m not alone. Others have opted out of trying for children due to having undesirable genetic quirks, mental health concerns, or intergenerational trauma; being too unwell; or having physical or energy limitations that would make parenting difficult if not impossible. I respect those unenviable decisions, because being childless-by-forced-choice is not easy.
Even though I felt like my choice was effectively taken out of my hands, I wasn’t happy about it.The grief that followed was rough, and it’s something I still experience to some degree. When I joined this childless community I found relief and solidarity, but it was complicated because I also felt like a fraud. These people have all tried to conceive. They have unexplained infertility, or they’ve had multiple miscarriages. They’ve been doing IVF for years. They have a right to grieve. But do I?
I struggled with this disenfranchised grief before realisation dawned: grief is grief. Loss is loss. I lost a hope and dream of raising children, of naming them and watching them grow. It was an intangible loss and just as real as any tangible one. My ongoing grief is legitimate. And so is yours. If you can relate, it’s not just you. You and me are are not alone.
I’ve stopped comparing myself to other ‘lupies’ who have gone on to have children. I’m genuinely happy for them and I no longer second-guess myself. I’m shaking off the guilt, regrets and ‘What ifs.’ My choice is mine, and no one can compare or criticise because they are not in my skin.
If you are living with chronic illness or disability, you are the only one who knows how it feels and how it limits you. No one can judge you. And even though we might have felt forced at one point in our lives, going forward we get to choose who we’re going to be and how we’re going to live. For that, I am grateful.
