The consequences of having difficulty gaining weight with CF
I've experienced hurtful comments, body dysmorphia, and more
Since I was born with cystic fibrosis (CF), gaining weight has always been a challenge for me.
CF doesn’t only affect the lungs; it can also cause a number of gastrointestinal (GI) issues. Because my body lacks the salt content to move fluids effectively through my system, my GI tract can get clogged with thick, sticky mucus. Additionally, the ducts in my pancreas get clogged, preventing the release of enzymes necessary for digestion. I have to take enzymes with every meal to help my body break down food and absorb nutrients.
As a result of these issues, I’ve been ridiculed for being too skinny, and I’ve experienced body dysmorphia and a love-hate relationship with food.
The consequences of GI problems
Our society tends to idolize certain body types, pressuring us to look a certain way so we can draw attention, find love, or belong. Many of us are constantly fighting against the narrative that we should change something about our bodies.
I’ve been skinny-shamed for as long as I can remember. In high school, I was accused of being anorexic. In college, I always heard comments about how I was able to get skinny, as if it were a privilege. Even today, I frequently see the social media message, “You’re not a real woman if you don’t have curves.”
Body dysmorphia began when I was young. Some people thought it was funny to call me fat because I ate a lot. But I had to eat a surplus of calories because I was burning so many while struggling to breathe. Words are powerful. Although I knew I was thin, being called fat all the time made me believe I actually was. I still struggle sometimes with thinking that parts of my body are fat, even though I’m at a healthy weight following my double-lung transplant in 2017.
Comments about my weight are hurtful. The most common one I get is “It must be nice to eat anything you want and not gain weight.” The truth is that it’s the opposite. In fact, I bet the people who wish they had my problem wouldn’t want all the side effects that come with it. Just saying.
My love-hate relationship with food is a direct result of CF. I had to learn to love eating because I needed so many calories before my transplant. Figuring out how I could consume more than I was burning became almost a game. I had to find joy in eating; otherwise, it would’ve been one more thing I had to do but didn’t want to.
I still enjoy eating and have a plethora of favorites and go-to meals. When I’m sick, though, eating is the last thing on Earth I want to do.
Before my transplant, I had to force myself to eat even when I could barely breathe, all because of the rate at which I was burning calories and losing weight. There were nights when I was so exhausted I could barely move, but I had to force-feed myself anyway.
Post-transplant, medication side effects have caused intense nausea, but I’ve had to power through and find ways to eat. Lifesaving medications aren’t a choice, and for me it’s 10 times easier to lose weight than it is to gain it.
Education is crucial to bridging the gap between ignorance and awareness. I hope sharing my lived experiences encourages others to think before they speak and recognize that they likely don’t know the whole story. After all, looks are often deceiving.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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Jeanne Parson
Wow! Reading this rings so many bells! I can say "been there, endured that, too". Its comforting to read about this from someone else.