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When to Tell Someone You Have Cystic Fibrosis

Posted Jul 20 2010 11:36pm

I’ve been holding onto this one for a while now. Since April, actually. I wrote this for my last English class to get my degree and submitted it to Newsweek in April. They require anything they publish to not be previously published, but it apparently didn’t make the cut, because they’ve have it for the allotted time to make a decision to publish it. Now it’s mine after the wait, so I’m going to use it here and re-purpose it for an online magazine soon. It’s more of an essay than an article like I usually write, so I hope you enjoy it just the same, despite many “givens” about CF that we already know as a collective group of readers.

Fatboy Living it up at the Beach My doctor says I’m doing great. “You’re over thirty and haven’t had a lung transplant yet,” he says with a big grin of approval of my condition. Only patients who are generally compliant with their treatment regimen and not in dire need of immediate medical intervention receive this grin.

Cystic fibrosis is the most common fatal genetic disease in the United States, with over 30,000 children and adults who carry the recessive genes from both of their parents. There are over 10 million carriers (those who only have one copy of the CF genetic mutation) in the U.S., which comes out to approximately one in every 30 people.

From a lifestyle point of view, cystic fibrosis isn’t much different from progressive, terminal conditions, such as multiple sclerosis. Things start out great as a child with medicine to keep trouble at bay. Some even enjoy a blissful unawareness of the disease due to a mild mutation of the gene that causes it. Generally, in the teens and twenties (when Mom and Dad aren’t an iron grip of treatment police), things take a turn for the worse. From then on out, it’s a battle against damage done and the natural progression of the disease transforming the lungs into something straight out of a horror film.

One of the unique decisions that we face is the timing of letting others know about this genetic atrocity. Often, the symptoms of the condition make it obvious that something is different with us, but I prefer to wait until a relationship has been established before entrusting others with, what I consider to be, somewhat personal information. Unlike someone in a wheelchair or with an obvious physical deformity, I can hide or disguise my CF for weeks or months.

I began working from home eighteen months ago and struck out on my own a year ago, forming an LLC with my wife and carving out a nice niche of work in my field. The newfound freedom to travel came in handy by allowing us to go to Ohio for a family vacation and I was able to connect with another guy in my field.

We met for lunch and got a big booth and started talking business right away. One thing led to another, which led to insurance talk, which led to another, which led to – a big coughing spasm. Now, if you’ve never heard a CF spasm (fondly referred to in our house as a “spaz”), it can be a frightening thing. I was embarrassed. I know how many shades of red and purple I turn and how far the veins in my neck and forehead pop out during a 10-15 second episode.

He was completely unphased.

“Do you have cystic fibrosis?” he asked with a calm, almost knowing look. I was probably twice as surprised by this response as he should have been by my cough. “Yeah, but how in the world did you come up with that just from hearing me cough?”
“I had a friend in high school who had CF, or rather still does. She had a cough just like that.”

It’s a small world, and that actually drew us into pretty tight business relationship over a one-hour lunch, as if we belonged to the same club, even though I was the only one with the membership pass. I suppose a guest pass goes a long way, because I let him right into the clubhouse of my current condition. I was understood: a major accomplishment for a CFer.

One time, I coughed at a friend’s birthday party and someone asked the usual question about me having a cold when I coughed. Out of character, I said, “Not a cold, I have CF,” thinking that would stop the questions because she wouldn’t know anything about CF. Her jaw hit the floor because she couldn’t believe that someone with CF could “look so normal at that age” from what she knew (uh, thanks?). She told us that she works at a CF clinic, at the hospital I go to, with the pediatric doctor I saw until I was 21. About it being a small world after all? It is.

My preferred method, though, is to let people, especially my clients, get to know me, my work, and my work ethic before letting them into my clubhouse. I want to avoid both the “pity card” and the “run away instinct.” We’ve all seen both in action, and it tiptoes on the border of discrimination at times and blasts right over it at other times. I prefer to avoid the border.

There have also been times where I wish I’d educated the ignorant, such as the businessman who “endured” a two-hour flight next to me. I exited the plane a few people behind him, but was just a couple of paces away when I heard him telling his buddies that he was going to get sick because the guy next to him was coughing up a lung.

So, be prepared for the unexpected the next time you complain about how you’ve had your cough for three weeks. Someone around might not have much pity on your temporary discomfort and tell you they have had their cough for, “Thirty-one years and counting!”

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