CF and Work

[Radies]

Unfortunately, in today’s world we find ourselves living double lives. At work we must be healthy. If your boss finds out your not healthy then you need to work damage control and find a way to appease their inquisitive minds without giving away everything since you might scare them into trying to make sure you don’t stick around long. As we all know, especially in this economy that employers don't want to hire people with terminal diseases. Sure there’s HIPA to protect your privacy, but the reality is we all get sick from time to time. You need to tell your boss, that you need to take some time off to get better. They obviously are going to require a doctor’s note. If your going on short term disability, then they are going to require a lot more paperwork that explains all the details of the illness.
I've been unable to keep it quite. I've had to tell my boss about it. They've been very good about it, and I've worked with the company over 8 years. However, things are changing with my company, and now I'm about to need to go work for someone else. I can't help but feel like I've been very lucky so far with my employers. This new employer is a smaller company with less than 50 employees. I'm concerned about the quality of insurance, and if this employer will be as accepting as the previous employers once they find out. I'm tempted to go to them before I accept the offer and tell them I have CF, just so they have a chance to react before they actually hire me. I know that may sound strange, but I'm just sick and tired of living a double life. I wished I could just be open about CF with everyone.
Am I all alone on this? What has your experiences been with trying to balance a career with CF?

 

[welshwitch]

I think it really comes down to the workplace culture. Is your workplace accepting of needing to take time off for health issues (or other issues) , or not? Most of this I think has to be screened by you in advance when you are interviewing for the job, and doing all the normal "red flags" screening that one must do before taking a new job. Same with insurance. You have every right to ask a new employer what the benefits are before taking a position. I wouldn't hesitate to ask for more time before accepting an offer to do more detective work. Talk to other people about work-life balance, and the like.

I don't think you necessarily need to tell anyone about the specifics of your health issues until you get to know them better. I would form a solid relationship with your boss, and prove yourself as a worker, and then if you still feel compelled to, let him/her know what's going on. By law they don't need to know the specifics of your health. Do you anticipate taking a significant amount of time off for CF related stuff? Or just a few days here and there?

I remember I told one of my old bosses I had CF, and I immediately regretted it. In retrospect I was having a freakout about the public/private realities of my CF and I felt I needed to tell someone. My CF was not affecting my work in any way, and what I really needed to do was to talk to a counselor (which I later did). My point is, I think you should only tell your boss/work if it is ABSOLUTELY necessary.

Just my 2 cents.

 

[stranger]

A company of a smaller size is not legally bound to offer short term disability (it be less than 100 or 50 employees). I'd investigate that just-in-case-scenario. Best of luck.

 

[kittenface]

I was diagnosed later in life - 37. I'm now 47 and only my very close friends that I work with know (three in fact) that I have CF. I have a mild form - D508 and R117 gene combination. I have had lung infections but never had to be hospitalized and a bowel blockage after I had my appendix removed. I'm afraid to tell my boss since for obvious reasons that when companies are restructuring they look at the people with the most baggage. I've been with the company for 22 years and have a great insurance plan. I live in Canada.

 

[Radies]

Originally posted by: kittenface I've been with the company for 22 years and have a great insurance plan. I live in Canada.
I thought everyone in Canada has insurnace becuase they have socialized medicine?

 

[LittleLab4CF]

Maybe you should profile your next employer. For openers, more employers are fighting a chronic illness than you might think. Chronic illness forces variability in work output. I think on average they are over achievers to start, and a business comes down to a few options to assure steady, unbiased employment. I have owned businesses myself, the last we sold after 18 years, and I have CF. The cheat was a few months prior to closing on the sale I was officially diagnosed with CF. Before that I was just sick with a lot of things before this so I just had a lot of manageable health issues. This was not for a lack of trying to put a name on what affected me.
To that end, I am not suggesting you jump ship and start your own business. But nothing having to do with your health or any diagnosis is fodder for a resume’ and definitely not a topic in any interview. In many states, there are anti-discrimination laws that apply to everything from health insurance denial to employment discrimination. This is an omnibus rule adding genetic discoveries about a person as discriminatory as race or sex etc., due to a hand full of geneticists spreading the warning of what was coming soon, mostly to select law makers. CF has specific genetic markers, but down the pike will be everything from a propensity toward heart disease to many genetically transmitted mental illnesses. They already have isolated the psychopath gene, at least one of probably many genes, but they are finding many successful business executives have this gene. Go figure. The point is God knows what disorder is going to be found that expresses the potential for something bad, or undesirable for employment. CF as has been pointed out @ 66% of CFers in America are DF508 and they present from misdiagnosis or no diagnosis for 47 years to infants so desperately sick, they will never see ten. So this is genetics that have a nearly total variability.
Nobody needs to disclose a genetic anything to an employer, or potential employer, and of course the same applies to health insurance. Assuming you live in a State that has the genetic omnibus law that is. What happens after that is based on your needs. “Always be worth more to your employer than he is worth to you”, was drummed in to my head by my first employer, a dear man who owned several local businesses including a Flower Shop. Strangely he wasn’t telling me something that was supposed to apply to my employment with him, it was my next job or a career change twenty years down the road.
From a legal standpoint, you hopefully have the upper hand. Your current employer sounds like they would gladly do whatever they can to assure you are employed again soon. By law, and this one is Federal, they cannot directly discuss any health problems or genetic disorder an employee has or not. Indirectly they can throw a little sand if they were inclined by rummaging through your sick leave and vacation, if they exceed what you were allowed. If you have a job where a general employment agreement is part of the equation, make sure you are covered either with added vacation days or a large number of sick days. Another option, employment agreement or not is to find an employer that runs on flex time, and if salaried try to invoke “Comp Time” or for practical purposes, when you are doing well, be sure to log as much extra time as you can without trashing your health in the process. Be sure that your boss knows and periodically signs your work ledger. When you are reduced to a 30 hour week or have to go in for a CF tune up, you have legitimate accumulated time, hopefully always being worth more to your employer.

 

[justdance]

Hi Radies,
I relate completely to what you are saying. I worked for a very small (12 employees) company for a year and did not disclose my cf. I was covering for a woman on a long maternity leave. The nature of teh position meant I had to keep in close contact with her and we became v close. Half way through the year I told her and don't regret that- it was more out of friendship plus she gave me some reassurance that it wasn't detectable and my work was of a very high standard so no problems.
Toward month ten of ocntract I decided to do home iv's- it could have waited but I don't feel that's ever a could idea so I agreed to do them. I travelled home to my parents house (150miles away) to do the 2 weeks. I told my employer I was having minor surgery (picc line insertion- kinda true!) that would mean no driving for two weeks, but I can very ably work from home. They were fine with this. Well everyone except the owner- a 78 year old man with serious personal boundary issues. Long story short, he couldn't stand the idea that I was not giving details (my doctors note did not say the nature of the surgery, as it does not have to!) but this man is NOSEY! He wouldn't rest until he had picked the brain of every employee to find out any bit of info on me. This boss had a vested interest in me- he wanted me to stay on and do world-wide sales for him. I declined as I knew it would be a no-no for my health and to be honest this bugged the crap out of him- no body turns him down! In the end he quizzed me until I caved. SO ILLEGAL I KNOW! This man is a loose canon. I now worry that he will tell other people inmy industry "oh that girl left for health reasons", which is not true and would be very damaging to my rep.
Anywayit's made me more fierce in my determination to not disclose it easily. My advice? Tread with caution. I see what you're trying to do and I understand you are sick of the "double life", so am I. But there are too many dumbass people out there for equality to truly exist, so you need some self-preservation. Obviously your hrelath is priority numero uno so keep that to the fore, but do some digging about the company's policies before you divulge.

Best of luck, keep us posted!

 

[artiste]

At first I was just diagnosed with pancreatic insufficiency. I was hired as a long term sub--I was trying to get back into teaching as my husband had left and I needed to work. (I had stopped teaching because I was so ill.) I didn't tell anyone at first, just to judge the atmosphere. I admit, I'm an over achiever. I did a great job, and was offered more work for the rest of the year. I told the school secretaries that I had pi, and they were helpful--at times I needed a bathroom quickly!!
I was hired full time, and have been teaching in this county for 8 years. I was diagnosed with CF a year and half ago, after a rough winter filled with pneumonia and constant bronchitis. I looked awful. My dad, a ceo in Philly, told me not to tell my employer about the cf. By then I had been friends with her, and the staff for many years. I told them all, wanting to let them know that I needed some time off to get well, but could continue to still work as hard as I had before. I also told her that my dad told me not to tell. She said she wouldn't fire me for being ill. It's worked out well. Other staffers have issues as well--severe diabetes, gluten intolerance, etc. It turned out fine, but them again I teach in a sweetie pie world of elementary school. I'd advise to not tell at first, see how your health is, and how the boss/job goes. It's a touchy situation, at best. Best of luck to you!! Karen

 

[cindylou]

Oh man, my husband (who is the breadwinner in our family) have been the rounds on this one a lot. He has at times wanted to tell his prospective bosses. I've always felt it was a bad idea.

His first job was with a company of less than 50 people. Sure enough, after we'd worked there 6 months and the insurance premiums were renegotiated, everyone's premiums went WAY up. They said it was because the employees were getting older, but we were 99% sure that it had a lot more to do with the hundreds of thousands of dollars we'd already cost the insurance company since starting! It was pretty awkward. In most situations, I don't think that would have worked. If it wasn't a very ethical company, it would have been easy for the boss to notice how much the costs spiked after we signed on, and to let my husband go as a result.

However, it was a very unique and wonderful company who rarely ever laid anyone off, had incredible ethics, and really loved their employees. So it worked. And ironically enough, the insurance there was a hundred times better than the insurance we now have at a much larger company. (Actually, in general, I've had better insurance through small companies than big ones!) So I would say that my biggest concern in working for a small company is - are they the kind of people that would lay you off if you spiked their insurance premiums in the first year?

Good luck!
Cindy

 

[kittenface]

Radies
I do have coverage through the government called OHIP however I also have benefits through the company I work for. It covers long term, short term disability a drug plan etc. but pay extra for the enhanced plan. Any stay in a hospital is fully covered - but. A plan gets a semi or private room etc.

 

[Swallowtail66]

My children and I were diagnosed after I had been in my position for some time. I had a very close relationship with my boss and called her immediately. She told me we were in it together and she supported me all the way. 6 years later I needed to move and find another job. I decided to be mostly open in the interview. I told them the children had CF and I would need time off to take care of them from time to time. I also told them that if there was a problem to make it known right then because I carried the health insurance and could not risk being out of a job. They called my old boss and she told them I had sick children and would be absent from time to time, but that I was worth every thing they put into me. They hired me that day. Shortly after, I chose two people to tell about my conditions because I needed someone to know what to do if I had a medical emergency. I am a teacher so one is our nurse and the other an assistant principal. Many people in our school have health problems and they push me professionally and take care of me personally. Maybe schools are a safer environment and they have state health insurance so there is less concern about what you cost them, but it hurts when I am out. I prefer to be honest.

 

[LittleLab4CF]

I feel like hiding under a rock. In the course of my business, I spent a lot of time with upper management and company owners. I was surprised how many business owners had compromised health and though they carefully avoided enabling employees who constantly pressed their luck, they wouldn't think of canning a person with a chronic disorder, even more, an employee with a special need child. These needs could be CF it could be osteogenisis imperfecta. which the daughter of our machinist has. My saving grace is I did note that it has been proven that a large number of psychopaths rise in the executive ranks.

 

[hannahj1d]

I have recently moved and just started a new job within the last month, i have a doctor's appointment in two weeks time, I have been feeling really sick lately (loss of weight, being cold constantly, stomach pains, etc) and I'm afraid I may be admitted into the hospital. Seeing as it's a new job should I tell them in advance? I forgot to mention it in my interview for the position and honestly haven't ever had to tell anyone I wasn't close with about my CF. My old employeers were really sweet about everything, giving me as much time off as I needed but I'm the sort of person who would push back my stays to finish the work week, or come back the day AFTER getting out of the hospital. There I had proved my worth in not letting my CF get in the way. Also, I had started that job at the age of 16 and my mother had told the company for me.
Now with my new job I am scared to mention it because I have not yet had the time to prove myself, and the job is still new and overwhelming to me (contributing to stress, which in my case means illness), but if I do not tell them and do end up being admitted can they fire me? I don't want to lose my job, or keep my job and have them upset with me for not being straight forward about my illness and the time it could take me away from work because in orientation the manager told us, we could not get weeks at a time off, and definitely not anytime through the holiday season. This is just really overwhelming and frightful to me, does anyone have any suggestions?

 

[welshwitch]

Hi Hannah,

sorry to hear you are going through work and health issues! Starting a new job is always stressful, but with CF it is ad added thing to deal with.

Obviously, your health needs to be put first. If you feel like you need to be admitted, then that's what needs to happen.

They can't fire you for needing to be in the hospital. It's against the law. However, it's up to you how to approach it. I wouldn't say anything about your health until it's clear that you do need to take time off for a hospital stay. In my experience, once you mention "hospital" or in my case "surgery", employers are quick to accomodate you. The way I have approached these things is, "I have some health issues that aren't serious, but I need to deal with. I will need to take X days off to handle it. I'm letting you know 2 weeks in advance so that we can take care of anything urgent that needs to be dealt with before I go in." That way, they know you are a serious worker and are willing to step it up to accomodate your health situation. At the same time, I wouldn't recommend letting them know the details of your health issues until you have proven yourself and gotten to know your boss and coworkers. It's up to you to let them know your health status, and federal privacy laws protect you from having to let them know the details.

I hope that things go smoothly!

 

[MMDanehy417]

From my personal experience Ive always worked in the clerical side of Healthcare. When working for a small private doctors office under 10-15 employees, I was eventually let go off all 3 jobs due to being late or going to doctors appointments, or having to be out for a few weeks at a time due to hospitalization. I even had a boss say to me when I was just diagnosed with CFRD that it was a burden on them!! Anyways I currently work at a large hospital with over 500 employees. I have FMLA paperwork encase I have to be out for a longtime, and everyone is more than accommodating about my illness. I did stay tight lipped about my health issues until I had to be admitted for two weeks for a clean out at the hospital. Ive currently worked at this large hospital for 4 years and could not be happier and want to work here as long as possible. Basically if possible I would recommend working at a large corporation or facility so you can get the benefits of the laws that help us in need.

Good Luck
~~~~~~~~~~~~~

Molly Danehy 31, Female with CF, CFRD & CFRL
Dx at birth

 

[draz91]

I totally understand your situation...I've been working since I graduated college 15 years ago and dealing with CF and work is always a challenge that most people just don't understand. Working in Massachusetts has its benefits in that any employer, small/large cannot fire you if/when you are sick and need time to recover....so where you live does matter. I personally have never told my boss/employer about CF until I needed hospitalization. I felt like my CF is my personal life and should NOT be topic of discussion...so far its worked out for me!
I would agree with others that working for a larger company/corp. is better because they won't feel the hit financially like a smaller company would if your out sick.
I hope everything works out for you!

 

[welshwitch]

Draz, plus one. Good answer

 

[Simba15]

After 25 years as an educator in a public school I experienced harrassment and ultimately was forced out of my job b/c of the disclosure of having CF. No one was supportive. I am a healthy CF patient so if I had it to do over again, I would not have disclosed it. I applied for intermittent FMLA and probably didn't need to. However, my employer has a history of discriminating against people with a diagnosis. I am now on umployment and at my age not so confident I will find another job. I would NOT disclose it unless you are a person who goes into the hospital more than 1x a year and takes more than 7 sick days a year.
There are many employees with illnesses and in myexperience, those employees get sympathy or empathy (cancer, complications of pregnancy). I got nothing b/c people don'tknow what CF is! Worst place I ever worked.

 

[Simba15]

she didn't say she didn't have insurance. she said she didn't tell her employer b/c she fears retaliation with a lay off

 

[hannahj1d]

Thank you all so much, I went ahead and told one of my managers that I had complications with my lungs and had a doctors appointment to see a specialist (i didn't disclose that i had CF). I told them that it was a possibility that i would have to take an extended time off of work and they were very kind about it (it's a retail store, bigger corp, have enough coverage, etc). Luckily I told them on Monday, because yesterday I woke up having a very, very hard time breathing and was coughing up blood (which has never happened to me before), I called them and told them I had to go to the ER and would update them today. I am now in for 2 weeks, and my job was very understanding and told me to call them next week with more information. So, though i still don't feel comfortable enough telling them what exactly i have, i am glad that i atleast told them something, seeing as i went from 0 to 60 overnight, it seemed.