Skinny. It's one of those words that has a significance all too specific to the cystic world.
A couple months ago I was in search of a dress for a formal work event. After a big setback in November, I've been on a slow recovery back to healthy. I tried dress after dress for several weekends in a row. Each time I looked in the mirror, fighting tears for what I saw looking back at me. My arms looked like toothpicks. My eyes went directly to my carved-out collarbone. I could see my ribs emerging where my cleavage once was. With my naturally long legs and narrow hips, a short dress was completely out of the question. I felt like a 10-year-old playing dress up. As the words left my mouth, I realized how silly they must sound to others.
“I look too skinny.”
In a culture flooded with advertisements about the perfect body, secret weight-loss tricks and fad diets, our cultural ideals of weight are often skewed to an image that is far from healthy. This overwhelming presence of the ideal body is inescapable.
What the outside world doesn't understand is that my skinniness is not a choice. It is often a direct representation of my health. A drop in weight is almost always linked to an infection I'm fighting as a result of my cystic fibrosis. To add to the complexity, my CF-related diabetes has progressed as my CF has. The conflicting regimen for the two diseases is a constant struggle. With lung infections come high-dose steroids; with steroids comes high blood sugars and a crazy appetite. With high blood sugars comes dramatic weight loss; with weight loss comes loss of energy. Loss of energy makes fighting multiple diseases and an infection unbearable. This cycle is exhausting.
While consuming more calories a day than I've ever had the attention span to count, my BMI is still well below the underweight category. When antibiotics make me feel sick, when I'm too tired to eat or when I have no appetite at all, eating is still not an option -- it's a must. My intake is strategic: high-calorie, high-fat, high-protein, low-sugar, high-nutrient, with extra vitamins and supplements, in combination with pancreatic enzymes and insulin. I am constantly calorie chasing and even so, there are days when I feel like I'm disappearing before my own eyes.
While much of the world struggles to find pants that make their behind look good, a cystic simultaneously battles the pressures of society to look normal against everyday decisions that affect the quality of his or her life. Without the right support and influences, priorities can easily be misconstrued, as young cystics don't understand the repercussions of temporarily blending in.
There is often a silent suffering that comes with chronic illness -- not because you don't trust your loved ones with these feelings, but because your natural reaction is to be strong. “You're so skinny.” “I wish I could eat whatever I want and look like that.” “Jeez, you're skin and bones.” “You're so lucky!” Although some of these comments aren't meant to be negative, they aren't equivalent to saying, “You're beautiful.” I feel like these comments are clearly said to draw attention to something that separates me from others. Consciously or subconsciously, they are a dig at my self-esteem. If I'm being honest, my first thought isn't normally as gracious as my actual response.
Body image is an issue that isn't going anywhere. This battle will never cease for those in or out of the CF community.
I'm not seeking pity or even empathy. I'm sure this post will seem petty to some and dramatic to others. The comments won't stop, and the topic won't disappear; but this is a reminder that everyone is fighting a battle. Although much of life is a series of events that are beyond our control, every day we still have control over our actions and reactions.
When I was in middle school, my older sister gave me a large frame with a small quote in the center by Ralph Waldo Emerson: “To be yourself in a world that is constantly trying to make you into something else, is the greatest accomplishment.” I don't think the gift was for any particular reason other than the fact that my sister knew the words were something I would need.
My fight is much bigger than being skinny, and the world is so much bigger than body image. At the end of the day, I choose to love. To love others and to love myself, to always give the outside world the benefit of the doubt and to combat ignorance with awareness.
