Lupus Mom: The Struggles Are Real
My children know I have lupus. What on earth would be the point of hiding it and having them just think I am choosing to cancel plans or avoiding doing fun summer activities with them? That would be worse than them knowing the truth and dealing with it.
Lupus is a part of our lives. I fight this battle every day, and some days are simply better than others.
This is what my legacy sometimes is: disease and illness. I don’t want my children’s memory banks filled with deposits of disappointment because I was not there for them, or that I was present, but no fun because I was ill. But much of that is out of my control.
So, my kids know the basics of what lupus is. I stop short of anything that might be scary or too worrisome.
They know that some days I endure well, others I fail miserably. They know I have pain and that I get very tired and the sun makes lupus angry. Living with lupus seems to offer a lesson each day for all of us.
Is Mom in Control? Not Always
Lupus presents unique parental challenges. Plain and simple, I cannot always do what I want, when I want to do it.
My kids need to know this so they don’t take it personally. The weather, the temperature, the sunshine, and the intensity of a flare all dictate if I can attend some of my children’s activities or simply jump in the car and go do something with them.
- Playing ball or riding bikes with my kids is sometimes beyond my energy level. I feel like I am a horrible parent for saying, “No, I can’t today.” I worry this is what they will remember. What should be fun becomes a test of strength, and it is exhausting. I see other parents and feel cheated of what they all seem to take for granted — laughter and fun without a price tag of pain.
- Active schedules with children mean dinner can be delayed until nearly 8 p.m. on some nights. While other parents may just grab some fast food, for me, lupus eliminates that option. Lupus triggers like fast food can increase a flare drastically, so eating the right lupus foods is crucial. My kids see how careful I must be to eat healthy and I think this sets a good example, but it also reminds them I have a very pressing health reason behind my caution.
- Being a baseball or soccer mom can be extra challenging. I want to be sitting on the sidelines, but it can mean being at a ball field in 50-degree temperatures or roasting in the sun in 90 degrees.
- My joints hurt so bad that simple tasks can be horrible to endure. Being mom’s taxi service means holding a steering wheel to drive even when the pain is more than I can bear. I try to hide it, but my kids know the difference in my mood and personality when I am in pain.
I have two older children, ages 25 and 29, who still need me — in different ways of course.
All four have moments and occasions that I should unquestionably be present for. But, these demands with lupus mean I carry a load heavier than most in order to keep everyone supported as they should be, and I usually find myself so tired I can barely communicate my need to rest.
The result is that I push through most of the time. I do it for them. I ignore what I can, like housework tasks, then feel guilty about it.