Parenting With Lupus
Last updated: September 2022
Parenting with lupus has been hard, especially when I was in nursing school. My daughter is 2 years old and is in the routine of getting sick and building her immune system. She is catching everything from left to right, which means frequent emergency room visits. Being a parent to a child and having lupus means that your immune system is also weak. So you are bound to start getting sick while trying to nurse your child back to health. My daughter has been sick off and on for about a month or so.
Tough lessons on lupus
I started nursing school and did badly because I had those long nights and days in the emergency room with my daughter and myself. My daughter started with a stomach virus and then ended up with a sinus or viral infection. Right now, she still has a frequent sinus infection. I also caught those same infections but much worse. When you're having a flare-up because a foreign disease has entered your body, there is not much you can do about it but let it run its course with steroids, but those days are the worst.
Parenting with lupus
Imagine holding your child while having diarrhea because she wants to be held. She does not see that I am sick. She just knows that she wants to be loved by me. Once, I felt bad because we were in bed, and she kept tapping me, saying, "Mom!" I was in so much pain that I could not move, and it seemed like my body had flared up as well. Having these moments does not bring the best attitude for us while dealing with other people when we are sick. The disease itself weakens our immune system and also our medications and viruses and infections see that as a pot of gold. We all know our immune system attacks tissues that it is supposed to protect.
My daughter is also in the phase of putting everything in her mouth even when she can tell that it is not edible. I feel that maybe that is how she ended up catching the viral infection. When I caught the infection, my chest was in complete pain every time I inhaled and exhaled. It seemed like my body was shutting down. I felt like I was dying, but my blood work was normal.
Ever since she learned how to walk, I have understood the phrase, "you are going to miss this phase." I miss her being a baby and my ability to protect and keep her home. Now it's time for daycare and more sick days. That is why I decided to take a break from nursing school. The school didn’t allow me to make those sick days up even with a valid excuse. At first, I felt like a failure, cried my heart out, and had another flare-up. But, I realized it was not my fault.
So check on us lupus parents because we need it. I remain humble, but inside I am like a motor that keeps running and feels like it will shut down at any minute.
Have there been things you have learned along your lupus journey that you wish had been explained to you by a healthcare provider earlier?