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Lupus Fatigue: How to Respond When Your Kids Have Heard It a Thousand Times

Posted on June 12, 2015


Guest post written by Sara Gorman.

This summer, the girls and I were creatures of habit. Every other weekday, we’d drive over to the pool around 11 a.m. We’d swim a little, eat a little, and swim a little more. Then around 1:30, the girls would head to the showers, and then we’d leave the pool just in time for our 2 p.m. babysitter…and my mid-afternoon nap. Because we did this all summer long, we truly had it down to a science. Between 1:54 and 2:06 p.m., you could always find us in the car, headed for home.

During that short car ride home, I would inevitably feel my fatigue set in. Chalk it up to the warm car, the exertion of energy during the past 3 hours, or the fact that it was simply time for me to sleep, I would always utter something like, “Girls, I am TI – erd” (phonetically written, of course, for accurate pronunciation!) about halfway home.

One afternoon, Deirdre, feeling a little more prickly than usual, responded to my comment by saying, “Mom, you’re always tired,” in a slightly accusatory tone.

Hmm.

Double Hmm.

I thought about what she said, and in the next 30 seconds, I reviewed my choices:

1) I could get defensive. I could fire back by saying that I am not always tired. I could elaborate, listing all of the times that I am clearly not tired at all…like in the morning when she wakes me up and we go down for breakfast, or when we play for three hours at the pool, or when we do fun stuff at night, or when I take her out to dinner, or practice gymnastics, or go to the park. I could force her to see just how un-tired I really am, making her think twice about her comment.

OR

2) I could feel guilty. I could convince myself that I am always tired, and that my fatigue really infringes on my children’s happiness. I could tell myself that my afternoon nap is having adverse effects on my kids, and criticize myself for using an afternoon babysitter every day. I could pretend that having a chronic illness and raising kids is absolutely, positively impossible.
(Oh, what nasty things guilt can do…)

OR

3) I could take a moment to collect myself, identify why she said what she did, and realize that there’s a pretty logical reason behind it. In essence, I could call her out, in a nice, loving, mom kind-of-way.

Opting for number three, here’s what I did:

I said something like, “Oh, sissy, you’re right, I AM always tired…on the ride home from the pool! It’s 2:00 p.m., which is my nap time. Good thing we go to the pool early in the day, so we have plenty of time to play, eat, and swim, all when I’m not feeling tired at all. Good thing, right?”

And she said, “Yeah. That IS right! So now you can take a quick nap, and then maybe we can all go back to the pool tonight. Daddy can even come. Want to eat dinner there?”

Then she paused, and said, “Mommy, I love you.”

Bingo.

Now, while I don’t always think things through so clearly, and #3 isn’t always the best way to respond, this time, I felt it was the right thing to do. The situation also made me a little more aware of what I was saying and when. After all, I didn’t even realize I was saying that I was tired each time! The girls are about as understanding of my naps as possible, so if it helps that I skip voicing my thoughts now and then, so be it!

This post was written by Sara Gorman. It is reposted with permission.

Sara is a native of Indiana and graduate of the University of Notre Dame. She resides in Alexandria, Virginia, with her husband, two young daughters, and pug dog. She was diagnosed with systemic lupus at the age of 26 while she had been married less than 6 weeks and was at a high point in her career in television production. She fights for her health and encourages others with lupus at any chance she gets. She is the author of Despite Lupus: How To Live Well With A Chronic Illness.

A MyLupusTeam Member said:

It’s hard to stay positive, it’s hard when you have no one to talk with, this page does help, we know you hurt, we know you are tired, hang in there.

posted about 1 month ago

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