How to explain CF to your coworkers...or do you?

[caccomando]

Hello CF community,

I am new here and hoping to gain some insight into the world of other CFers. I am 27 (almost 28) and have a full-time career I am proud of. I have been fortunate, up until now, to have what doctors call a "mild" case of CF. (Mild despite having the most severe mutation.) I have my master's degree and I work hard in the corporate world. My health, and its impact on my career, has never been a question...until recently. And frankly, my health is still good, but not as good as it used to be. (This concern and how to deal with it will be a separate question.)

I cough several times a day (as many CFers do). But, recently, either I'm coughing more and louder, or people are hearing it more than ever before. Every day, I get the question, "Are you sick?" or "That sounds awful; are you ok?" or "That doesn't sound good; you should go home." My answer is usually, "I'm fine, thanks." or "It's just allergies." Or, something along those lines. A lot of people don't know what CF is, so I don't think it makes sense to just casually say, "I have CF" and expect them to understand why I'm coughing. (Although, I don't mind if people know.)

So, here's my question. Does anyone else here work in the corporate world (or any work environment) that has had a similar situation? How did you deal with your cough in the workplace? Did you tell people you have CF, and then explain the cough as a chronic symptom?

I'm not worried about being treated differently, but I want to make sure I handle it appropriately. I'm the type of person that wears my heart on my sleeve because I think it's easier when people know things - I just want them to know the right things. And, I definitely don't want to be that girl who's always sick.

Thanks for your help!

 

[Aboveallislove]

I'm going to take a stab from the co-worker standpoint. If someone had a nasty hack and kept coming in, I might think they weren't being very considerate of others and might be bringing in something. And if you end up needing time off, some of your coworkers might be upset that you didn't "let them know" what was going on. Obviously it depends on how close you are to the coworkers. And of course you don't want a rumor mill going round. And from what I understand you don't want to keep the coughs in. I'm wondering if it might make sense to next time it happens to just say "oh, I'm fine, I just have a lung condition, not quite like asthama, but one that makes me have this nasty hack from time to time, but the condition isn't contagious; I'd never come in sick. thanks so much for asking." of course, the way things work is typically the rumor mill will start but if you say it like that it might not be that big of a flag.

 

[jaimers]

I think what Aboveallislove is great. I've never told my coworkers immediately but I can only hide/minimize the cough for so long. They, along with my bosses, have always been so kind and understanding and even been worried for me when someone else came in sick. The reaction can certainly vary from workplace to workplace so if you feel comfortable with your coworkers knowing then an explanation like the one above is a great place to start. There are stories on these forums from people who have had really bad experiences once their coworkers/bosses found out about CF. Again, it varies from place to place and if you've been there a while (it sounds like you have) and are a good employee, put in good work, etc. it might be a good idea to just give them a little bit of an explanation. then if something were to get worse suddenly it wouldn't be a huge shock.
I've worked in corporate office environments since college.

 

[4hats]

I've worked in a professional office environment for the last 23+ years, so I can appreciate your concerns. I often get the comment, " are you ok?", " do you want a cough drop?", etc....sometimes I am in my office, coughing away and someone walks in. Sometimes, I am in a meeting and I have to excuse myself. It goes on and on......Currently, no one at work knows I have CF. That is a personal decision that I have made. However, I have told people that I have a chronic lung condition that makes me cough. I reassure them, that they can't get what I have and that if it was something contagious I would not come in to work. That explanation does it for many people. Once you establish this, you don't get the same questions over and over.

 

[imported_Momto2]

I'm not in the corporate world, but in similar situations, I'd tell people I have asthma. Folks understand this- sounds bad, but not contagious. I'd reserve the real reason for friends.

 

[windex125]

Although I am older and my career in the corporate world was back in the 80/90 I did not tell anyone. I just said asthma and allergies as well, I always kept a bottle of Robussin in my desk draw and wld take a slug when needed. I felt it was a personal decision and since it was always dry hacking, not loose and horrible like it is now with phlegm it was under control for the most part. I say keep it to yourself. Pat/59

 

[semnle34]

I worked as a Police Officer for 10 years. I wasn't sure initially whether I should say anything to anyone or not but I eventually had no choice but to. I know they say that by law you don't have to disclose your medical information but in my profession it was mandatory. I eventually told my coworkers and received mixed emotions as expected. Some felt if I was sick I shouldn't be in that line of work etc. Police work is cut throat. I'm not sure what line of business your in but at least notifying your boss or supervisor of it isn't a bad idea. Bottom line for me was I couldn't hide it. I coughed all the time even though I was in good shape at the time. There was no way around explaining hospitalizations and IV antibiotic courses. Its really hard to hide CF especially as it progresses. Most of my coworkers were understanding along with my supervisors. As long as you come to work and do your job and don't use your illness as a crutch most people wont say anything. There will always be one or two though. That's just the way people are. Once I got to a point where my CF affected my ability to actually do my job I retired. Hope this helps

 

[welshwitch]

I say it's your own business unless something comes up and you have to tell everyone -- like a hospital stay or something. I have CF and work full time and haven't had to tell anyone. If anyone comments on my cough, I give the standard allergies/asthma answer. Unfortunately, none of us are protected when it comes to chronic health conditions -- I don't want to be targeted or singled out just because I have CF. I also think of it like, everyone has something -- we don't know the half of it when it comes to our coworkers' personal medical history. That stuff is confidential for a reason.

Friends and family is a different story, of course

 

[rmotion]

Wait till you kill it in the restroom, like the one the boss uses. Not a good time to have the worst smelling stools ever produced. THen what do they talk about and avoid you. I am still recoiling from that one. One real doosey in the bath room they will talk less about the cough. [ Just kidding, it is a hard thing to deal with co-workers and people in general.

I just wonder why we all have this intense fear of talking about CF, self included. Is it we do not want to be embarrassed or people wont understand, we do not want to be singled out as sick or discriminated against. It is such a common thread that most of us live with this fear. Maybe because CF is so multi faceted or what not. If someone is in a wheelchair or other obvious disability, there is just a certain leeway that people automatically assume. or give to. Would it be easier to say anything else. IT would because it is not something we have [ and this very fact is what scares us and is our entire life and such], If we told someone that we have asthma would that suffice, is that easy enough to "get" not real complicated.
I have had trouble my entire life telling people, I try to come clean but most the time I don't. Maybe collectively we could disclose our "horrible" secret.

 

[welshwitch]

I think there's something about the work place that just lends itself to needing to fit in, assimilate, not rock the boat etc. for the sake of survival. The workplace is a microcosm of winners and losers, and sometimes just one thing can tip you to the "layoff" or "fired" bucket.

I too am conflicted about this. I wish that I could just announce to my work that I have a chronic, incurable, possibly terminal lung disease. But I also feel that I spend so much of my time trying to stay afloat and be on my boss's (and team's) good side. Why jeopardize that?

On the other hand, wouldn't it be nice if we worked in work places that were designed to support people with health issues?

 

[BreathinSteven]

Hi Caccomando!

This is a complicated situation, depending on your work environment and your coworkers. Though I don't have the education background you do -- I was and am in a career that I'm proud of and I've been in the same company for 35 years now (minus a 3-year "vacation" for new lungs - medical leave, terminated, then rehired after I received my lungs...) I started crashing and burning in my early 30s. Before that, I was reasonably healthy -- but always had a horrendous cough and about-yearly hospitalizations (which I scheduled my "tune-ups" as vacations...) In general -- I kept things on a "need to know" basis... I did not make a point about telling senior management -- I did explain the situation to my boss. My boss was very compassionate and watched over me like a second mother -- I was very lucky to have someone like that...

I did explain the situation to co-workers... As someone mentioned above, you don't want someone working next to you or around you day-in-day-out and have them worried that you were contagious, and worried they are going to catch something you're dealing with... it puts them at ease when they understand that situation better... In my situation -- now and then we'd have visitors and auditors in our departments who thought my boss and coworkers must be inconsiderate and uncompassionate buffoons because I was back in the corner at my desk, coughing my guts out, and they were acting as if nothing was happening... (They often had to explain to others that I was actually OK, and this was normal...)

The thing you worry about now is that companies are sometimes not as tolerant, forgiving or compassionate. Sometimes, the bigger concern is whether you will impact their group insurance plan -- or whether you're more likely to call in sick (ironically -- with my "tune-ups" scheduled as vacation -- I took no sick days, ever, for a 12 year period! I think having a job, having a purpose, kept me going and kept me healthier...)

I think it's best to be straight with the people closest to you -- your immediate coworkers or immediate management -- explaining your cystic fibrosis -- so that they will be less concerned about coughing fits and whatnot (and contagious behavior...) At the same time -- I think it's good to be wary about who you tell -- and about how you deal with this in your work environment... I'm lucky to have been where I am for 35 years -- but, 35 years ago many work environments were much different than many are now... In my tiny mind -- there was much more concern about people and their lives when I entered the workforce... Sadly -- now there is more concern about how much you are going to cost the organization... Be careful...

Love, Steve

 

[calebf]

I've been working in an office environment for the past 7 years. Both jobs I've had I have disclosed to my boss and coworkers on a need to know basis and usually not immediately. I was hospitalized while working at both companies (still am working at the second, and just got out of my 4th hospitalization this year - thank God for their unlimited sick time policy). My boss and team at my current job are very supportive. Both companies donated to CFF because I worked there. Last week my team raised $3000+ while I was in the hospital! At my current job I'm finding my disease gives me an edge (imagine that) cause we are an ad agency that works entirely with pharmaceuticals. Few people understand the patient journey there better than me. That's a unique situation, but even at my previous job which was not health care I had a lot of support. My advice is to work hard when you're healthy to be the best at what you do. So practically it makes no sense to try to find anyone else even when you're out for 2 weeks. The support will follow.

 

[dschertz]

I had a few jobs over the years, I had to stop working about 4 years ago, I am 45 now, worked since I was 18. Last 15 years I was an electrician (horrible on the body). I finally gave up hiding it. I tell everyone. Got tired of the "smoker" comments etc, also used it to my advantage to get out of overtime (therapy). My last year was the worst, working in a new hospital and viruses and colds kept making me miss days every month (IV time is always fun on a construction site, especially when people see the lines dangling) LOL. Although it didn't directly get me fired, I did get laid off. Went on to the next job which was my last. It is ultimately up to the individual, but I got tired of hiding it.

 

[Gorf]

I worked in the public in retail for 18 years, I did not hide what I had though at that time I was only having to get meds every 3 years. I medically retired last year. The doctor had been pushing for me to for the last two. I told all I thought that needed to know up front. Even if it happened to be a customer that gave me a weird face when I coughed. Apparently my cough became distinctive over the years. At the last couple years I was unable to sneak up on any if I wanted to. In my opinion tell who you want. I told people more as I got worse to avoid the constant question are you ok, not for any sympathy. In this day and age you need to relieve peoples fears that they can't catch what you have.

 

[Lori White]

I have worked in a grocery store for the past 12 years. In the past two years my cough has gotten a lot worse and I hear the same comments.... That sounds horrible, are you contagious, or are you ok. I use different reasons depending on my mood and who is asking. I have finally started to say I have COPD.
Some of my coworkers I am close with know and the managers know as well. It is a difficult decision to make on what to say though.

 

[ladybird]

Hi there!

I fully sympathize and know how hard it can be. I think everyone's situation is different. At my last 2 jobs I disclosed my CF because I needed to take time off for hospital visits and because I needed reduced hours. Most important thing is to say it is genetic and that your germs will not affect anyone with healthy lungs. Be prepared for the fact that many people won't care And will not be sympathetic, especially if you need to reduce your hours as I did. I was a lawyer at a law firm in the first job and a corporate counsel in the second job. My boss at the first job had a burn em and turn em attitude so it was tough. To protect myself I made the disclosure via email and kept copies. It was a high pressure environment so I changed to the corporate job. The corporate counsel job was better as I was paid hourly and so they were happy I wanted to work less hours and do the same position. I worked Mon, Wed, Fri for the last couple months. I was there. I was recently approved for SS disability and still do contract work for the law firm that gave me such a hard time. There are times in life when you have to be who you are. If you stand up for yourself with honesty and consideration for others you will be powerful not weak. There were many times at the law firm job that I refused to do weekend work and was worri d I would be fired but I wasn't. Today I am good friends with the office manager and they actually approached me about the contract work I now do for them. There is power in honesty done right.

Be prepared emotionally for the hurt of an unsympathetic response. One or 2 people cared but I never got flowers in the hospital or a get well card. Realize that it is hard for others to accept 2 contradictory things - that you are good at your job but also vulnerable due to chronic illness. If you prepare right and think of it from their point of view it will go OK.

 

[welshwitch]

Well stated, ladybird. Thank you for that.