Letting Others Down: Living with Lupus

I’m overly conscientious. Some might think this is a good trait, particularly when they happen to be on the receiving end of my hyper-conscientiousness. I will always arrive on time (or early and sit in my car and wait until the appointed time), deliver whatever it is I promised you, return your calls, and you can count on me always to do what I tell you I’m going to do. Sounds great, right?

Here’s the flip side: If I’m not careful, Miss Conscientious’s evil stepsisters—Inflexibility and Guilt— sneak into the picture. I do try to remain relatively flexible in life and not hold others to my own high standards, but I struggle with guilt. Over the years, I’ve learned that my lupus has a bit of a twisted sense of humor. First, she lets me commit to things, knowing just how conscientious I am. Then, when the day or appointed time comes to follow through on whatever is planned, she steps in with her wicked little laugh and says, “Not so fast, Miss Cindy. I think today will be a pajamas-all-day day.” And out the window my plans fly, hitting Guilt as she makes her way in when I have to call people and tell them that I won’t be able to do what I promised.

I realize this isn’t rational. In my head, I know that people understand when I am sick and can’t show up, just as I understand when the same thing happens to them. But I don’t like it. No matter how much I try to sugarcoat it, letting other people down just feels crummy to me. This unpredictability is one of the things that make living with chronic illness so challenging. And it is compounded by the fact that the disease is invisible, because often on the outside we look fine and like we should be able to do what we promised.

This presents a huge dilemma. Do I regret invitations and not accept responsibilities because I might not feel up to them when the day arrives, or do I accept and then cancel if I don’t feel well? I am sure there are millions of others struggling with this decision as I write. It is especially important because if we start to regret everything, we can become lonely and negative things start to snowball. That’s when I begin to feel that lupus has Cindy, not that Cindy has lupus. And, for me, I refuse to let this happen. I refuse to let lupus run (or ruin!) my life.

So, here’s what I’ve decided: I plan to keep being actively engaged in life, especially with people who know and love me. I’ll make the plans, I’ll accept the responsibilities, and will do my very best to do what I promise. But, and this is a big but, my health does come first. If a pajamas-all-day day happens to hit on a day I have plans, I might have to reschedule. And you know what I’ve learned? Life does go on without me (a hard lesson to my conscientious little soul) and it is a whole lot more fun being with me when I feel well. I’m leaving Guilt behind and bringing Smile and Humor to the party!

About Cindy Coney: Ambassador of hope and author of The Wild Woman’s Guide to Living with Chronic Illness, Cindy Coney is a nationally acclaimed speaker, trainer, human resilience expert, and philanthropic force. Dedicated to helping both children and adults achieve optimal health and success, Cindy has taught thousands of people to move beyond coping with limitations to recapturing joy and fulfillment in their lives.

Diagnosed with lupus in 1980, Cindy has since driven a race car 124 miles per hour; completed the Chicago Marathon; championed countless nonprofit organizations; presented to the World Lupus Congress as a keynote speaker; and shared her inspiring, empowering story from Belize to Baltimore.

Follow Cindy’s Blog at www.cindyconey.com