A mother reaches for the things she needs to care for herself, but is prevented from reaching them by an oversized pacifier

Pairing the Demands of a Newborn With the Strain of Lupus

In my experience, you can let a lot of things slide during a lupus flare. You can let your dishes pile up, take a sick day, order take out for dinner, or let your toddler watch a bit too much TV. But you can't let anything slide when it comes to caring for a newborn.

It’s essential to keep a newborn fed and clean, but just those 2 tasks involve an enormous amount of work. The baby must eat every 3 hours, but they will often eat every 1 or 2 hours for the first few weeks or months of their life. Some days (or more often, some nights), it seems like they need to eat constantly. And they make all sorts of messes - frequently. I never understood just how much work a tiny baby was until I experienced it firsthand.

Newborns are even harder with lupus

Lupus symptoms, especially a flare, can make it hard to do anything at all. During my first pregnancy, I agonized over how I’d ever take care of a baby when flaring makes it seem impossible to take care of myself. But it doesn’t matter how many lupus symptoms surface in my body because someone must take care of the baby around the clock.

I'm quick to call in my support system when flaring while taking care of my infant. I need to make sure I'm okay, and my baby is okay, and try not to push myself too far.

But when a flare lasts for a long time or my disease activity is increasing overall, it’s inevitable that I end up taking care of my baby while I’m exhausted and in pain. It's simply not possible to have help on every hard day. It’s a balancing act between caring for my little one when I’m struggling and recognizing the times that I really can’t do it by myself.

I have trudged through many long days of a needy baby and an aching body. It's hard to pick up a baby when your fingers and wrists hurt. It's hard to get on the floor with them and then back up again when your knees give you problems. It's hard to have endurance when that afternoon fatigue hits hard, but the baby isn’t napping.

Remembering to care for yourself as a mom

When my baby needs me, I’m there for him if it’s at all physically possible. I have crawled across the floor to him several times. I’ve cried from pain while bathing or feeding my child. Those maternal instincts - to be there for them no matter what - are vital to caring for a newborn. Yet, they take a toll on your body, and they often preclude you from being able to take care of yourself properly.

All of the things that are part of a healthy routine with lupus, such as nutritious meals, exercise, and quality sleep, can seem completely out of reach when you have a newborn. Normally, I almost never forget to take my medications, but I’ve missed quite a few doses over the past 2 months because I’m so focused on my baby.

When you’re struggling to take care of yourself, then you’re more likely to flare. Many women suffer from the dreaded postpartum flare; I had a terrible one at 6 weeks postpartum with my first child. Childbirth and postpartum are unbelievably difficult times for your body, so be kind to yourself and get as much rest as you possibly can.

Adjusting to mom life

Many moms with lupus have struggled greatly to get where they are, perhaps navigating infertility or a high-risk pregnancy. Finally, having a baby in your arms is a tremendous gift, but it also brings a complex field of emotions. My baby needs me more than anything in the world, and yet I know that my body could fail me at any moment. Lupus is busy making my body attack itself, so how can I trust it to let me take care of my baby?

Some days I can’t do it, and that has been the biggest struggle of adjusting to life with a newborn (and a toddler this time around). I feel like I’m not enough for my children. I try to acknowledge those feelings so that I can work through them and find healthy solutions. The answer may be therapy, changing up my lupus medications, more help, or all three!

Motherhood won’t always be this hard, although it does continue to be hard in new and surprising ways as kids get older. But when my baby gave me a big smile for the first time, I felt like my heart might just explode with all the love. That joy overflowed, and it gave me enough strength to get up and do it all again the next day.

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