Cystic Fibrosis is hardly a glamorous disease. Among the laundry list of CF symptoms, many of us struggle with the following (lovely) traits:
- Very salty-tasting skin
- Persistent coughing, at times with phlegm
- Wheezing or shortness of breath
- Frequent greasy, bulky stools or difficulty with bowel movements
Told you…no glamour here.
Some people seem to think having a chronic illness should eliminate body image issues – like maybe chronically ill people can’t be bothered with something as superficial as cup size or cellulite. That may be true for some young people with CF, but my reality was this: dealing with life-threatening lung infections and painful intestinal blockages certainly took my mind off beach body season from time to time, but sick or not, I was still just a girl growing up in a body-obsessed society. And living with CF often feels like you’re not in control of your own body, let alone at peace with it. For a long time, I spent many more nights awake in fear that my crush might google CF and see “bulky stools” or “phlegm” in his search results than I did thinking about the gravity of my illness.
In high school, I dreaded summer. At least certain aspects of it – the public parts. Sure, it meant beach days and school vacation, but it also meant salt crystals on my skin, a mucus-riddled cough from the humidity, dehydration (and probably diarrhea), and worst of all – bikinis. Remember those bulky stools I was talking about earlier? Those are the result of a heavy mucus buildup in our CF bodies, which often causes malabsorption of food and poor weight gain. And while that means we tend to be skinny (as if that’s the end-all, be-all, right?) it also typically leads to GI issues, intestinal blockages, and in my case, a distended stomach – or what I’ve come to know as my pot belly. What’s worse, just above the pot belly marks a pretty sizable scar – a remnant of intestinal surgery from my infancy. I spent most of my life aged 14-24 trying to hide what seemed to me a deformed and embarrassing stomach.
When fall came back around, I happily packed away my two-piece but not my body issues. And while my bloated stomach was safely out of view, my fingers were not. I am part of a percentage of CF patients who exhibit clubbed fingers and toes. A benign symptom of CF, but an unnerving one nonetheless when you’re young – anything that made me different made me less attractive, or so I joined the millions of insecure young girls and women in believing. Though I’ve gone through this life with most people not noticing, or at least holding their tongues about it, you’d be surprised how many adults have no qualms asking me”what’s wrong” with my fingers and toes. Unlike my stomach, there isn’t much to do to hide misshapen appendages. So instead, as a teen I avoided nail salons at all costs, opting to keep my nails short and unpainted, in hopes they’d be mistaken for plain rather than ugly, or even better – ignored all together.
Another tricky thing to hide: a chronic cough. And once more, it’s hardly glamorous. While Nicole Kidman may look dainty as a daisy coughing up blood as the tuberculosis-infected Satine in Moulin Rouge, I assure you that’s not what it looks like in real life – at least not any time I’ve had the pleasure of experiencing it. And though I’m happy to report I cough up blood very rarely these days, I do cough up some pretty serious loogies. Big, green, monstrous phlegm balls that sometimes wind up sticking to the inner elbow of my shirt after a good cough sesh. Better than sticking in my lungs I suppose, but not ideal for a young woman just trying to get through the day without inducing vomit from unsuspecting passerby. And I’m not the only one who suffers from these mucus attacks. There have been casualties! When I was 21 and recovering from a particularly nasty bout of pneumonia, one of my visitors said something funny I guess because laughed – and shot a huge phlegm bullet onto my friend’s boyfriend. At least he was nice about it…
Even when I don’t have pneumonia, my cough is loud and often head-turning. Read: not cute. As a younger woman, I tried to stifle my cough all the time – praying to stave off the concerned stranger or the “cut down on the cigs” jokes. I chewed gum in glass, hoping it might curb my urge to cough. I popped cough suppressants before work (which by the way, is not encouraged at all with CF as we need to cough it up and out of the lungs). I went to bonfires, coveted any seat up-wind and crossed my fingers the breeze wouldn’t change. I hung out with smokers and pretended it didn’t bother me – almost always risking a lung infection or the very least a gnarly cough in the days to come. And I’d even get mad at myself if I had to let a cough escape somewhere public and quiet – in the library or at the movies.
Speaking of quiet, I used to miss days of school just so I could poop in peace. Fun fact: those bulky stools I keep bringing up also don’t smell that great if I miss my pancreatic enzymes. And these trips to the bathroom bucked the asinine urban legend teenaged boys so routinely believe and perpetuate: girls don’t poop! As if it wasn’t terrible enough being the only human girl to ever poop, if I missed too many enzymes, I might land in the hospital with an intestinal blockage – an experience that is not only painful but embarrassing. Try explaining to your teenaged friends what an enema is.
Sometimes I think the most difficult part about growing up with a rare disease, but not so rare body image issues, is that no one ever touched on any of this in CF clinic. Body image wasn’t really a factor. I loved my clinic and in no way am I faulting them – when I was born, CF was still a childhood illness and they were probably just trying to get us to adulthood. But I do hope that today’s young people with CF as well a the CF clinic staff are more educated about the possible body image issues accompanying this disease. Because I couldn’t help but feel deformed when a group of med students fawned over my clubbed fingers and exchanged geeked out “just like in our text book” looks before even so much as a “hello” to the insecure kid attached to the abnormality. And because I still can’t shake the judgement and confusion I was met with when I told one doctor in college that I had ceased taking the steroids prescribed for lung inflammation because the side effects (weight gain and acne) were too much to handle freshman year. While everyone around me was concerned about treatments, BMI, clubbing, and nutrition, it seemed they’d forgotten they weren’t just talking to a CF patient, they were talking to an adolescent girl.
I’m not an adolescent girl anymore, thank God. So is there a happy ending? Have I finally come to peace with my body, with what CF has done or will continue to do to it? No. And I’m not sure I ever will but I am making progress. As I’ve gotten older with this illness, I’ve stopped rolling my eyes at that “my scars tells a story” mantra and have actually kind of embraced it – or at least I’m only sometimes rolling my eyes these days. I now appreciate my body and am kind of amazed at its resilience. I’m still here! Even more remarkable, I’m feeling pretty good most days. Having a flat stomach is not nearly as important to me as being able to run 3 miles without wheezing. Plus, one piece bathing suits are back in style. And while you still may never find me in a nail salon (some insecurities are tough to kick), I’m happy to talk enemas any day of the week.