Soulati-'TUDE!

Today’s guest post is from a Twitter pal of mine, . There couldn’t be a more supportive person to my blog; you frequently see her comments here, and she’s always RT’ing my material. For that I’m forever grateful, and to show that appreciation, I suggested she pen a post right here at home.

By way of further introduction, Jenn is a corporate communications pro who enjoys sushi and social media, often at the same time.  Currently she is project manager and marketing specialist for , a Glastonbury, Conn. interactive design firm.

Take it away, Jenn…

I have cystic fibrosis.

I have so many stories I could tell you about what it’s like to grow up with a fatal illness, but the story I’m going to tell you today is about navigating the workplace when you’re a sickie like me.

First, the facts.  Cystic fibrosis is a genetic disease. Specifically it is an autosomal recessive disease. This means my parents do not have cystic fibrosis, but they “carry” the gene, and when they made me, they hit the genetic jackpot, so to speak.  The disease is known for three things:

• Thick, sticky mucus that clogs the lungs, scars them, and makes breathing difficult.
• That same mucus clogs the pancreas preventing enzymes from aiding the digestive process. This makes absorption difficult, and a person with CF is typically underweight.
• Salty sweat that for years was used to diagnose the disease.  A person with CF has sweat that is two-to-three times saltier than average.

The median life expectancy of the disease is, right now, somewhere around 35. When I was born, I think the life expectancy was 23. I never let CF get in my way, and my doctor informed me I’d outlive him!

Since the CF gene was found in 1989, great strides have been made in research in terms of new therapies, including genotype-specific therapies.  Although I am extremely healthy for a person with CF, I take pills and nebulizer treatments every day.  As a child I still underwent week-long hospital stays when I had pulmonary exacerbations and had a feeding tube in my early adolescence.  Compared to my CF peers, I have had it easy!

As an adult with CF, living in the United States, my biggest concern is having health insurance coverage. My best bet for health insurance coverage is either through employment or a spouse’s employment. Since I’m not married, it’s critical that I have a job and have benefits.  One of my drugs (taken every other month) is $6,000 without insurance.

Early on, I was cautioned by another adult with CF not to reveal my disease to my employer.  She said she had been passed on promotions because of the concern she would get sick and not be able to handle the workload.  I took this to heart.  So, I started off every job (since I finished my degree) not telling employers about the CF. Inevitably, I had to tell them, because of the coughing.

I didn’t cough so much as a kid, but CF is progressive. I cough quite a bit now, and I get a lot of questions about it. Some people are concerned for me; some are concerned for themselves and the germs I might give them. The short version of the story is that I’ve tried to lie and say, “I have asthma.”  Believe me, this doesn’t work – people with asthma just don’t cough this much.  I still get questions.  As long as I’ve already got the job and I’m not in the interview, I’ve found it’s easier to cut through the BS and say “I cough because I have cystic fibrosis, I’m not contagious, you can ask me any questions you might have.” (So much for privacy.)

Enough about me; let’s see if I can offer any tips for sickies.

• Tell your immediate boss. If you’re reading this, you’re probably not the kind of person who uses his/her illness to get special favors. The point of telling your boss is to get understanding and cooperation if you have a problem. For example, I need my boss to know I cough, I have frequent doctor appointments, and sometimes I run late in the morning because my therapies are time-consuming and/or I’m having symptoms.
• Tell your immediate co-workers. Same reasoning.
• Don’t be a hero. Sometimes you’re just having “the usual” problems.  And other times, you need to work from home (arrange it so you can do this if need be), or even take the day off.  Don’t make it worse on yourself to prove something.
• Take care of yourself. You’ll be pretty shoddy at work if you’re not taking good care of yourself.  Pulling the odd all-nighter? Not great, but okay. Doing that regularly?  Find another job, period, or else your body will come after you.

I’m a little embarrassed that my list doesn’t contain earth-shattering revelations, but if you want those, here’s the list of jobs I considered but then realized I couldn’t pull off due to coughing:

• Spy. I wanted to be Nancy Drew as a kid. My ability to eavesdrop is pretty much nil.
• Physician’s Assistant: I’ve always been drawn to healthcare. But would you see a doctor you thought was always sick?
• Actor: there just can’t be that many TB-patient roles.
• Food service / Waitress: you want some cough with your fries?

Got more questions about CF? I recommend the .  You can also ask me.  I clearly don’t mind, since I just told the entire Internet all about it.