Talking With Work About Cystic Fibrosis

Last updated: January 2023

I have always enjoyed working. My parents noticed my work ethic when I was younger, and it has remained the same. My motivation for working has changed, but the love of it has never waned. When I was younger, I worked so I could buy new earrings at the mall. And today I work because I want to help people in whatever way I can. Working brings me a lot of fulfillment.

I remember getting my first job in high school. There was a work-study program at my school for seniors. In the morning I would go to school. And in the afternoon, I would go to work for a few hours. It was such a wonderful learning experience for me, and I really enjoyed it.

Over the years I moved on to different jobs. A constant thought I had, no matter where I worked, was my concerns about working while living with cystic fibrosis (CF). What were my biggest concerns? How would I address them with my boss? And how would I talk to co-workers about CF? It took a few years, but I was able to figure out a way to communicate my concerns and experiences with CF without feeling like I was oversharing. And I want to share those things with you today.

Concerns at a new job

Thinking ahead about concerns at a new job is normal. Most people do. People wonder if they're going to like their new coworkers. And they have concerns about how they are going to juggle everything as the new hire.

Living with CF means you have a few more concerns compared to someone without CF. As I stated before, I had concerns about how having CF would affect me at work. There are some things you cannot control no matter how hard you try. And that's what most of my concerns were about. For example, we can still have stomach issues even if we take all our medicine. And sometimes stomach issues can be very painful, very taxing, and can effect other people. What do I mean by that?

Let's imagine you are having a CF stomach issue. For example, you may be experiencing one or more of these symptoms such as pain, cramping, gas, bloating, or blockages. This can cause you to need to use the restroom a lot. Or you may not be able to come into work if your symptoms are causing you too much pain.

That was one of my biggest concerns when starting a new job. I was worried about how my stomach issues were going to affect my work performance and coworkers. The concerns you have are valid no matter what they are. Additionally, knowing what they are is the first step to help you get ready to have a chat with your boss.

Talking with bosses

Only you can choose how to talk to your boss about living with CF. It is vital to remember that you need to speak with your boss if your illness could impact your job. For example, being in the hospital affects your job. You may not be able to work while you are in the hospital. Or maybe you can work, but it is fewer hours per day. Either way, CF is impacting your job and your employer needs to be informed.

It is crucial to recall that you do not have to tell your boss everything. You do not have to tell them the medicine you are take. And you do not have to tell them your treatment plans. The information your employer needs is about how your illness will impact your job.

Talking with co-workers

You have now told your boss about your illness. And now you may be thinking about how to tell your coworkers. This is another chat that you must decide how to handle.

Speaking to your coworkers can be helpful or it could be unhelpful. Their response can range from supportive to dismissive. They could become an ally or become resentful toward you.

It is your decision whether to tell them about your health. You also get to decide how much to disclose. For example, I always told my coworkers about CF. But I tried to only talk about how it affected daily life.

Boundaries

I didn't share every detail when I spoke to my boss and coworkers as I got older and gained more experience. It wasn't helpful for our work relationship. And I sometimes felt uneasy sharing such vulnerable parts of my life. Our conversations mainly focused around if my appointments were good and if each of us felt well that day.

By setting information boundaries I felt less vulnerable. Remember boundaries are just guidelines. Boundaries can help relationships thrive. Having boundaries about what information you share at work about CF is healthy.

Starting a new job can be exciting. There are new people to meet, talents to hone, and new skills to learn. A new job also provides new learning experiences. And a part of that experience is having conversations about your CF.

Talking about CF at work can feel overwhelming. Remember that you are in control of the information you share. And if you have any questions talk to your Human Resources Department.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Cystic-Fibrosis.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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