by Alyssa Rosengard
I am an old movie buff. I inherited the gene from my mother. On rainy afternoons in her bedroom, we used to watch classic movies together like “The Thin Man,” “Maltese Falcon” and many. One movie we enjoyed written by Tennessee Williams and starring Marlon Brando and the beautiful Vivien Leigh is called “A Streetcar Named Desire.” Leigh plays an aging debutante named Blanche Dubois who in Southern twang drawls: “I have always depended on the kindness of strangers.”
It would be nice to count on the kindness of strangers, but in today’s society in which reality TV and electronic communication rule, thoughtlessness is common. And, this can be a dilemma for those of us who are chronically ill. A common theme on my CVID (common variable immune deficiency) Facebook page is the frustration we experience getting people to believe we are ill. We have enough to battle: constant doctor visits, intravenous (IV) medication, infections, stomach illness, pain and exhaustion. Why do we have to prove we are seriously ill?
On the 4th of July weekend, I was at a picnic with friends and some others we had just met. When I meet new people, I don’t usually lead with: “Oh, by the way, I have no immune system.” I wanted to enjoy myself and not think about my illness for an hour or two. But, when I politely refused some of the food and alcoholic beverages from one of the guests, she inquired why. So, I gave a brief description of my disorder and tried to move on. This woman then tried to tell me that I “didn’t look sick,” and “if I only ate better,” I would be as good as new. Was she rude and intrusive? Yes. Was I angry at her thoughtless banter? Yep! She never even listened to my explanation, but she felt free to give me her self-centered opinion. In the end, I decided to let go of the situation and not cause a conflict on such a beautiful summer day.
Unfortunately, this is a common occurrence in the world of the chronically ill. Strangers, family members, spouses and even doctors may not take the time to be sympathetic or open to learning about our medical conditions. They may jump to their own conclusions that we do not want to clean the house, attend a family party, pick up the kids, take a particular medical test or even feel better. But, most of us would trade just about anything not to feel sick anymore.
Having my chronic illness means never getting better but trying not to get worse. It is a marathon of medical tests, IV treatments, doctor appointments, insurance company phone calls, etc. So when an individual asks, “Are you still sick?” I respond by telling them that I am resilient. I am surviving my disorder, a genetic inheritance, a chromosomal mutation. I know that I am stronger from being ill. This disorder has pushed me to extend my patience, my ability to endure, to become self-reliant and, yet, know when to ask for help. To sit still and be with myself without distraction. To recreate my life and work prospects. Knowing that each day I get up, I am grateful to be alive.
Blanche Dubois said that “deliberate cruelty is unforgivable.” I disagree, it is forgivable whether deliberate or not. Thoughtlessness from acquaintances, family and medical professionals is changeable. Individuals with chronic illness struggle to survive daily both physically and mentally. We are strong, resilient survivors who can speak up and be heard.