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Post by Kristy O’Connell

To Tell or Not to Tell?

About a week ago I had to take off a day from work because I was developing a cough and knew I was coming down with something. It was a Thursday, so fortunately I had the whole weekend ahead of me. Anyway, I wound up with a 102 fever and was on bed rest all weekend. The following week, I returned to work feeling better but with a lingering cough – I didn’t expect anything less. But when my coworker asked, “Oh no! Is your cough coming back?” I shrugged, but knew that this cough might be here to stay for months upon months. CF, man.

Seven years ago, the FDA approved Kalydeco®, a drug that changed everything for me and made CF so much less visible on the surface. Shortly after starting Kalydeco, my chronic cough literally vanished and I experienced a whole new kind of normal. My weight was up and my lung function was well above 100%. I was thriving. And with that, came a desire to uphold every sense of normalcy that I could. This new normal was riveting.

The problem with that whole ideology, though, was that I may have forgotten for a good few years that Kalydeco was not at all a cure, though it did bring my confidence in my health to a whole new level. What I didn’t think about hard enough then was that, while my CF wasn’t expressing itself as strongly as it once did, progression was still happening beneath the surface. I’m learning that now the hard way. And when I decided to pursue working in education, it did not even cross my mind that it could become a detriment to my health. I’m now grappling with that too.

So here I am, a graduate student studying childhood education and getting my foot in the door at local elementary school: Year one in the petri dish. People did warn me once I started the position that working in education could wind up affecting my health, but I’ve always had this “It won’t happen to me” or “I’ll manage and cross that bridge when I get there” kind of attitude – for better or worse.

And if you’re wondering if I told my co-teacher that I have cystic fibrosis, I did not. I did not want to have that discussion just yet. And no, I do not tell most of my employers ahead of time that I have CF, and it has worked out fairly well for me thus far. I usually allow my coworkers to find out for themselves when they see my posts on social media, or I’ll casually mention it in passing if something related comes up in conversation. It is important to me that people see me first before they see me as someone with cystic fibrosis. I want them to first see a hardworking person who is capable and not too sick to carry out everyday tasks.  And honestly, I am a little weary that if I don’t let them see me as a person first, they might think my mentioning cystic fibrosis is looking for some sort of pity or sympathy.

Generally, speaking about CF to my coworkers/new friends in a nonchalant way has continually proven to be simpler and better received. But please note that I realize I am very fortunate to have the stability that I have to go about it this way. I am aware and completely understand that such a scenario is simply not possible for some. And I am by no means saying that I actively hide my CF in an effort to feel or appear more “normal.” However, when I am sick with an exacerbation, I may not initially label my cough as CF-related as I do not want any sort of special treatment. If I can get better in a timely matter, I generally would rather to leave CF out of the discussion. I prefer a people-first relationship, in which my friends and colleagues get to know me as a person before they get to know me as someone with CF. I do not want a misconstrued image of me established before someone even gets to know my personality or work ethic.

Unfortunately, however, in recent months, it has been difficult to casually wait for that “nonchalant” conversation. How does one explain that she has a cough that lasts for weeks at a time but isn’t contagious? It may be the case over time that I am unable to allow CF to just casually slip in – it may be the case that I need to let an employer know before they even hire me what they are up against. I imagine that as my illness progresses it will only become more difficult to not go into a career having told my employer about CF. And that is a reality that I am going to have to face. Should I simply respond to people’s questions about my cough by casually saying, “Oh don’t worry, I’m not contagious. My cystic fibrosis is just acting up.” Could it really be that easy?

It also may be the case that working in an elementary school setting may turn out to be too dangerous for my health, and I will have to make a career move. This is something that we, as people with CF, have to grapple with. Whether or not we tell people about our battles with CF is not a One Size Fits All circumstance. We must evaluate our health and factor that into the careers we choose. Some people are simply unable to hide their CF in any shape or form, and others may feel that doing so does more harm than good. At the end of the day, what matters most is that our health always comes first, however that be possible.

Other posts by Kristy O’Connell

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Our Community Column is a home for thoughts and opinions of members across the cystic fibrosis community. Sometimes serious, every so often lighthearted, but always engaging. It is our duty and privilege to listen to these stories and to share them with others.