The change was gradual, but, once I stopped to think about it, unmistakable. The invitations stopped. Invitations to lunch with the girls. Dinner parties and family picnics. Even weddings.
My first reaction was to wonder what social faux pas I had committed. Was it the moment I totally blanked on Great-Aunt Sophie’s name? Was it the informality of the outfit I’d worn to the Masons’ soiree?
But then I realized this closed door policy did not have such shallow roots. Instead, it stemmed from fear of, and pity for, me and my illness. I was in the midst of a serious prolonged flare of my rheumatic disease (lupus) and apparently, many in my social circles feared that a call to me would depress me (and them) because I’d be obligated to recount my latest struggles. They also anticipated pitying me because I’d have to turn down their invitations.
In short, many friends and acquaintances had decreed that I was too sick to have fun. They’d decided that it was easier not to invite me than it was for me to have to say no. The result was that I no longer had choices –choices to participate in the lighter side of life.
Like any warm-blooded soul, I needed to regain choices. My husband has always called me the original party girl, happiest with a three-ring circus in session. I had had enough of old reruns, crossword puzzles, and watching my dog fighting her fuzzy blanket during my convalescence. That was hardly the three-ring circus I was accustomed to.
I had to find the blown fuses responsible for this social blackout. I mentally explored the gamut of possibilities. I wondered, for example, if people understood I wasn’t contagious. I remembered trying to arrange our baby’s baptism, and having to cancel several dates because of illness. After trying to explain systemic lupus erythematosus to the priest, he suddenly couldn’t fit us in anywhere on his calendar. And then I realized I had mentioned immune system, and it finally came out that he thought I had AIDS. Were there others who feared what they didn’t understand?
Many casual acquaintances didn’t know I live with a chronic disease. They knew only that I cancelled out at the last minute from the mothers’ coffee, the church’s Christmas luncheon and the neighborhood progressive dinner. My explanation was always “a cold coming on.” Perhaps they really didn’t understand, thinking of me only as unreliable, but how could they understand? Why hadn’t I told them I didn’t choose to be unreliable?
My close friends were another story –I was ready to scream at them. Didn’t they know I needed to get out, to stop counting the spots of rice cereal the baby threw on the celing? Didn’t they know I could still sip club soda on the rocks from an easy chair or laugh over a new movie? Where were they when I needed them?
With that thought the revelation came. The people who cared about me most were trying to protect me. It was like they were packing a cherished porcelain possession in layers of tissue paper to protect it from breaking. On some level, they thought if they packed me away they could make me well again.
Finally understanding what I was facing, I sent an all-points bulletin: PEOPLE WITH AN ILLNESS CAN HAVE FUN–AND NEED TO HAVE FUN. I gradually tried to help friends, family and acquaintances understand that, yes, my plans are sometimes altered by periods of ill health. Yet I wasn’t going to let it be said that my illness runs my life–only that I have to listen to what it tells me. I am not always happy about the time it chooses to be heard, but I must listen.
My friends now know: please ask me. Please give me the choice. Don’t feel bad if I say no. Think of the times I can say yes, and remember–I just may be sending my regrets because I was asked to the prince’s ball!
Like anyone with chronic illness, I sometimes must alter my plans to accommodate physical limitations. I can skip the volleyball game when I need to and still enjoy a college-reunion picnic. Lunch out with the girls can be carry-in to my dining room when my energy gives out. My friends and family have begun to realize this.
Granted, some choices will never be mine. A noontime sail from the sands of Maui is out of the question for anyone with photosensitivity like mine. But I’ll trade it for a sail into the sunset. Lost choices may be an occasional reality, but I–and those close to me –have learned that best choices are usually just over the horizon.