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When to Tell Someone You Have Cystic Fibrosis

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.

That Sure Is a Bad Cold

Fatboy Living it up at the BeachMy 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!”

Comments

  1. Jennifer says:

    How about when you were younger? My baby is 15 months old, and I have a blog and am making it very public. It's very severe. I want him to have as “normal” childhood as possible, but I'm not sure it'll ever be a secret, except from strangers, of course. I know when I do explain to a stranger or somebody I just met and they know a little bit about it, I feel a little more understood. (Even though I'm not the one that has it – he is) .How did you/your parents handle this when you were growing up.

  2. I never really had the option to hide it as a kid, at least from adults, because that was often divulged on my behalf, but I was usually able to be myself with other kids and tell them if I wanted to, which I often didn't. Their parents always knew if I did a sleep-over, and we didn't bother with doing aerosols that night or morning – my best friend's mom was an RN anyway.

    Thanks for stopping by and leaving such a good question.

    I played every sport I wanted to, up to and including track and football, so CF never held me back physically other than my size. I was always in the 5th percentile or lower growing up, and even now. 5'4″ is just plain short for the US population. Hospitalizations will be an obvious time that people find out, but other than that, kids don't really seem to care growing up. They were 5,000 times meaner about my size, glasses, clothes, and other kid things than my hidden disease. I even got a life-size get well person cut-out from my 1st grade class when I was in the hospital, signed by everyone.

    A “normal” CF childhood with is possible for the most part, unless there are obvious physical differences that indicate something is medically wrong. Everyone at school eventually knew because they grew up with me. Everyone at church knew. Everyone at church after we moved to Florida found out when I got sick the first time down here. That's just the way life goes. You can't hide being sick, you know? If people find out because of an episode, that's fine, I deal with it, not ashamed of it. I just never want to tell people too early to avoid the pity treatment. The treatment you give someone when they say, “This is Johnny. He has MS.” Boom! You've instantly categorized him and given him some sort of timeline of expectations in your head.

    Wow, that's really rambling, but I hope it gives you some insight about how things went and how things can go for you.

  3. Hi Jennifer,
    This is Jesse's dad. You asked a great question and it's one I wish we hadn't had to figure out for ourselves. But I suppose, as Jesse said, every situation is different, so we all have to travel uncharted territory. I'm sure we made lots of mistakes, but that's inevitable. I think that if your focus is, as you said, giving your child as “normal” a life as possible within the constraints of making sure he stays alive to live that life, you'll usually make good decisions.

    We didn't try to make a secret of Jesse's disease. That's impossible if you have friends, but we didn't really like to talk about it with other people either. Who would? It always seemed to take a lot of very basic explanations and usually elicited expressions of pity, which we didn't like any more than Jesse. It was hard for me to be patient with questions that seemed obvious to me even though I knew they were not obvious to most people. But since we were older, we were a little more tolerant of them. On the other hand, explanations are an investment that help ward off future misunderstandings, embarrassments, and just plain thoughtless comments. Now Jesse is 31 and I still don't like it when the subject of CF comes up. I usually try to keep the description as short as I can and talk about the ways Jesse is making us proud of him.

    Jesse has always been an aggressive, hard charging person who wanted/wants to excel at whatever he did/does. Because his pulmonary involvement was not extreme during his school years, he was able to participate in lots of sports and other physical activities. He usually seemed to go for the slot that was most physically demanding like bass drum and then cymbals in the marching band, nose tackle in midget football, etc. I think that had to generate some respect from all but the cruelest kids. But like he said, kids are mean and they will usually find a way to put down anyone different.

    Since your son's CF is presenting so much more severely than Jesse's did at that age, I would expect you to face quite different challenges than what we did, but the basic goal should still be the same for all of us — to help our kids become all they can be. I think you'll be a great CF mom because it's clear from your question that your concern is for your son and not so much on the challenges that CF has brought into your life. There are lots of difficulties ahead for you and, really for everyone. But there are also lots of precious memories about to be made.

    I guess I got a little long with my answer too, but I hope that if it isn't helpful, at least it's encouraging.

  4. Dad, I enjoyed it, if no one else does. Thanks for the parental view of my past. I should have started this site 13 years ago.

  5. One of my favorite articles that you've written! Especially the part about meeting Chris, I couldn't believe it when you told me how NOT surprised he was.

  6. Thanks, Beautiful! I know, that was my most memorable part about telling you the story, too.

  7. Maybe, but 13 years ago you weren't ready. Just think, if you'd been ready 13 years ago. Wow! 😉 Anyway, I don't think you can know how proud I am of you and thankful to the Lord for how He's working through you. This is just plain awesome!

  8. No, in wasn't ready straight out of high school. Thanks.

  9. Jennifer says:

    Thank you, Jerry and Jesse! That all makes a lot of sense. I read Ronnie Sharpe's blog post about his mom and how she always just introduced him as her son, Ronnie. Because none of us are defined by our diseases or illnesses. Even on my blog, I try to keep it a family blog – I do talk about CF about once a week because folks want to know how Brett is doing, and it's a good opportunity to share what it's like and clear up misinformation people might have. But every other day, it's our regular life with 3 sons. This is one way I show that CF is just one aspect of life. So many things can be learned and shared through tough times.

    I'm going to do my best and take each day as it comes!

  10. I appreciated and enjoyed reading your respone to Jennifer as well. I am Jennifer's aunt and have followed, and will continue to follow, her through this valley.

    Until her child was born, I had no idea what CF was, much less how it attacks the body . ..I now have a healthy, knowledgeable respect for it and the families it invades.

    And your right. Jennifer is one heck of a strong mother – not to mention managing a home and teaching her other two boys respect for the disease. Her husband is just as dedicated, caring, and loving as she and commits all his spare time to his family.

  11. Thanks, Norma. Being a CF parent is probably the 2nd toughest job in the world – right after being a CF patient. I'm thrilled that Jennifer has a solid, supporting husband.

    Don't get me started on people who bail out when they find out that there really is a “worse” side to “for better or worse!” We saw that a lot in other families when Jesse was a child in Ohio and saw how much harder it was for the single parent, usually the mom.

    Kudos to both Jennifer AND her hubby. And to you too for the help you give. If not for one set of Jesse's grandparents living nearby, we'd have had a much worse time of it. It really does take a team.

  12. Jerry, I hate to say it, but because of the distance between us, I am of no help to Jennifer and her little family – except by prayers and moral support.

    But she has strong family support via her parents and Rob's father. Not to mention really caring friends and acquaintances that provide their love and assistance in a myriad of ways. I'm always astounded when I hear of what their friends do for them; and wonder if I needed that much help would anyone show?

    Sometimes I wish we were closer so that I could at least spend time with the boys; take them to their activities (Rob & Jennifer make sure the other boys are not restrained from normalcy any more than necessary) and be a 'taxi service' for whatever she needs . .but it just isn't to be right now.

    Yes, we all know spouses that bail when problems enter the home and I don't want to get on that soapbox either! After my research on CF, reading Jennifer's blog, plus daily updates from Jennifer's mom (my sister) and knowing the time it takes to care for a CF patient, I can't imagine ANYONE doing it alone.

    I am so very proud of Jennifer and Rob and how they handle their little family. And I'm glad I found your family as well. I'll be following Jesse almost as closely as I follow Jennifer's CF child.

  13. Shoot, it takes a village to raise an idiot like me. There's a village missing their idiot somewhere in Ohio now. 😉

    Yeah, I imagine 1981 would have been darn near impossible to handle/coordinate if G&G weren't close enough to come pick me up if need be.

  14. I'll appreciate it, Norma. I hope I can live up to your grand expectations. /grin

    I've found quite a few single CF moms via Facebook – they have the most desperate daily status updates of just about anyone I've seen. Quite sad.

  15. G&G were an incredible help. If we'd stayed in Colorado, I suppose others would have pitched in, but there's no one better than G&G for kids when M&D can't be there.

  16. Any support is a huge help, but a loving and available family nearby is the best.

  17. That's about all any of us can do, I guess. A day at a time is wise. We'd never make it if we tried to digest everything at once. It sounds like you've good good support. May God keep giving you wisdom, patience, & emotional stamina. You have an added load mixed with a big blessing in keeping life as normal as possible for the other sons.

  18. Michelle says:

    Hello Mr. Petersen. I was born with Cystic Fibrosis and I would like to thank you for the article. You just made my like a WHOLE lot easier. I'm 19 years old and a Sophomore in college. Being in college forces you to be more social with people . Not to mention that because of the CF I'm skinnier and smaller than most of my female peers. The only people who know of my disease are my family members. But now that I spend so much time in school it gets harder hiding the enzymes I need to take and the albuterol I sometimes need to use. And to think it's as simple as saying “I have CF” after being asked “Do you have a cold?”. Sorry for the long post. You don't know how grateful I am. Again, thanks a lot! 😀

  19. My pleasure, Michelle. College can and will be a very difficult time to stay compliant for about a dozen reasons. I’m glad you’re trying to stay on top of it while you try to appear as normal as you can. I am a master of hiding taking my enzymes. Sometimes I cover my mouth/cough/drink my meds when I’m at a table with others. 😉 inhalers, not such a big deal because tons of people have asthma. A major coughing spaz: dead giveaway to something being wrong.

    Where are you going to school?

    Take care and don’t be a stranger.

  20. My pleasure, Michelle. College can and will be a very difficult time to stay compliant for about a dozen reasons. I'm glad you're trying to stay on top of it while you try to appear as normal as you can. I am a master of hiding taking my enzymes. Sometimes I cover my mouth/cough/drink my meds when I'm at a table with others. 😉 inhalers, not such a big deal because tons of people have asthma. A major coughing spaz: dead giveaway to something being wrong.

    Where are you going to school?

    Take care and don't be a stranger.

  21. Michelle1991 says:

    So sorry I took so long! I wanted to reply but then I forgot the name of your blog! I am going to be a junior at nyu. I don’t think you mention how you told your now wife that you have CF. So…how did you? Is that too nosy of me? Thing is that I went out on a date a couple months ago with this guy I really liked and I had no clue how to tell the him of my CF.