Choosing to Have Kids Is Complicated When You Have Lupus

When I was a teenager, there was no question about whether I wanted children. I did, and I wanted three. Even as a teen, I remember picturing little kids with half my features and a mix of my best and worst personality traits, each mini-me with my dad’s determination, my mum’s empathy and heart, and that double dose of stubbornness I inherited.

There was no inkling of doubt in my mind that having kids was part of my future; it was a vision that ran through my head for years. But my circumstances changed between my teens and early 20s. For one thing, I was diagnosed with lupus.

In the past seven years, my stance on having children has varied. It started as overwhelmingly in favor, transitioned to absolutely against, and recently has been everywhere in between.

For most of the past five years, I didn’t want kids. Once I’d settled on the decision, I felt content and confident that it was the right choice. At the time, I was happy. There was no longing to open that door to see if the grass could be greener. There were no holes left by the absence of my offspring. All I saw were alternate avenues and new opportunities.

Recommended Reading

December 1, 2022 by Patricia Inacio, PhD

Remission Before Pregnancy Linked to Better Post-partum Outcomes

Lupus enters the equation

I felt this way for a variety of reasons, one of which was my health. I’m not the only person affected by my lupus. For years, I’ve watched as my chronic illness created waves of hurt that rippled into the lives of my loved ones. Regardless of how it makes itself known, I’m bound to lupus for the rest of my life — and so is anyone who loves me.

I’ll never be without lupus, as remission doesn’t mean what most people think it does; it doesn’t mean cure, and it doesn’t mean the illness is gone. It’s only sleeping. Like the villagers at the edge of a dormant volcano, a small part of me is always lying in wait for the next eruption.

As a woman with lupus, the issue of kids has plagued me in one way or another for some time. For a while, it was easy to choose “no,” dismiss the rest of the question, and nail that door shut. At the time, it was a simple choice that fit perfectly into my life plan. Things are different now. I have new questions and different priorities and dreams.

When I think about bringing a child into this world, I have so many questions.

I have concerns about my body and how it will handle something as physically taxing as pregnancy. Even minor things, like a small shift in routine or a couple of hot days, sometimes throw me for a loop. I also worry about coming off immunosuppressants. I stress over what that looks like and whether my body will cope after I’ve relied on them so heavily and for so long.

Once the baby is born, it’s a whole new reality that even healthy people struggle with. There’s the lack of sleep, the new routines, and the endless list of little things that go with bringing up a child. I worry that sometimes I don’t know if I have the energy to get myself out of bed, let alone tend to a tiny human who’d rely on me completely.

And even with a head full of reasons nagging at me already, there’d be a cacophony of new worries that I don’t even know about. It’s a tale as old as time: All we can know for certain when we talk about bringing up children is to expect the unexpected.

I’ll know when I know

When I make decisions, I often go from uncertain to all-in-committed in the space of five minutes. When I make up my mind, it’s made. I commit to my decision knowing I’ve analyzed enough data and assessed the situation from all angles. Sometimes decisions take a few minutes, sometimes it’s a couple of days, and on a rare occasion, a month.

Once I had enough data, for example, I decided to buy my first property in a night. It was a life-changing decision. But this is different, even more monumental, because it’s not just about me.

The difficult thing about writing this column is that even though I’ve thought about this long and hard, I’m only scratching the surface. There’s so much more in my head that I’m not quite ready to unravel, unpack, and talk about. Not just now, not just yet.

Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to lupus.