CF and discrimination?

[welshwitch]

Hi all,

This has been weighing on my mind as of late. The topic of CF and discrimination. I am trying to figure out why I am so afraid of revealing my CF to my employer. I also don't want my name and CF Google-able. Is it because I'm afraid of being discriminated against? With all the new policies in place with regard to infection control I feel even more wary about being more public with my disease.

I'd love to hear your thoughts. Maybe it's only in my head.

Has anyone ever experiences discrimination due to having CF?

 

[stranger]

this is a good practice. the cost of personalized medicine is in the cross-hairs in society today and nearly any advances that are made in CF in the near or long future will be categorized as such. be a stranger!

 

[Simba15]

My advice: DO NOT DISCLOSE IT. I learned the hard way that even when filling out FMLA you do NOT have to write in "cystic fibrosis." You can write in the symptoms: difficulty breathing; exhaustion; GI difficulities. DO NOT disclose. You will be viewed as someone who can infect others and can be terminated if you pose a health risk. Sounds illegal but depending on the state you live in, and the job you have may not be. I lost my job one year shy of the minimum retirement contribution. Don't be like me.

http://federalfmla.typepad.com/fmla_blog/2008/04/employer-not-en.html

 

[welshwitch]

Yes, everything that has been written makes sense. But….then I think of the other side. What if some day I want to be a public face of CF? To run a fundraiser? To speak at conferences? To run a marathon and be running for CF because I have it and I want to find a cure? All of these experiences seem to require going public with your disease. So how can I be an advocate if I have to keep this side of my life a secret from my work and other areas of my life?

Thanks in advance for hearing me out.

 

[welshwitch]

And also: right now there's no reason for me to let my employer know anything about my health. I work full time and my health is great

 

[Simba15]

Cross that bridge when you get to it. Employers are NOT nice guys looking out for your best interests. They are looking out for theirs. Anything they view as a "liability" they get rid of. Sounds negative but I am being realistic. Employers know nothing about CF. I do not carry any of the germs most CFers have but they insisted I did even after my doctor told them I didnt. Law suits take 6-8 years and ALOT of energy!

Yes, everything that has been written makes sense. But….then I think of the other side. What if some day I want to be a public face of CF? To run a fundraiser? To speak at conferences? To run a marathon and be running for CF because I have it and I want to find a cure? All of these experiences seem to require going public with your disease. So how can I be an advocate if I have to keep this side of my life a secret from my work and other areas of my life?

Thanks in advance for hearing me out.

 

[Jennyvb17]

I've never had any problems. I usually wait until I hit the 1year mark, so you get FMLA.
I work in HR, I'm the one who administers the FMLA. we are not out to get people or scew them out of their jobs. There are new regulations within the ADA that make it 100% harder to terminate someone due to a serious health condition.
I think people are more understanding if they know what you are really facing.

 

[welshwitch]

Thanks, Jenny. Could you explain to me what FMLA is exactly?

 

[Jet]

I don't think there is a right or wrong answer. I've worked for a large health insurance company for 20 yrs. Some people at work do and others don't know about my CF. My companies been great and very supportive of me and others with issues. I think you need to know what kind of culture and the work environment of your company. If it's hostile or not supportive I'd be reserved about it too.

FMLA is the Family Medical Leave Act that large employers are required to follow.

 

[Jennyvb17]

^^ that is right. If an employer had more than 50 employees it is a federal requirement that they follow this law. The hard part about it- you have to make it to one year of service before you qualify. For me it's why I've stayed with my current employer. I'm not sure I can make it a year without excessive absences anymore. But once you make it 1 year- it gives you 12 weeks unpaid time off each year to use for your condition. Those 12 weeks can be used in 1 hour increments. It protects your job while you are out, they have to have a job for you when you come back.

 

[jaimers]

I haven't told my employers before this current job until i absolutely had to which was usually due to IVs and having to be in the hospital. it worked out that it was usually after 1 year. My current job i had to cut back to part time after working for them for 8 months (docs orders) and they were more than helpful and completely accommodating. I've never once had an employer treat me differently or discriminate against me due to CF. I guess the only thing that would come close is that with my current job I do not meet the requirements to be on long term disability because my condition was pre-existing (their qualification for this is that i saw a doc for this condition within the 3 months prior to going on disability for the same condition) and i had not been employed for 1 year. had I been employed for a year or more prior to going part time i would have qualified. So unfortunate for me, yes. discrimination? no because this would apply to any employee no matter the condition.

I think it's just like others have said, each experience will be different. some will be fine or even really good and others will not be good at all as Simba experienced. You kind of need to feel the situation out but i've never disclosed CF in an interview or immediately after being hired. give it some time and show them that you are a valuable employee and work hard.

 

[peter]

I have a small business (less than 50) and I think 90% of employers know a valuable employee when they employ one and also the cost of "retraining". All employers allow for "acceptable illness" but small firms may not do well if staff is too often short (which always happens with vacations). So if you're "good and valued" give yourself some self-worth credit. Saying all that however, TMI, is always a concern. Never lie if asked "do you have a problem I should know about?". The ADA was established so an employer, once you are employed, can know more about you but legally not discriminate because of that knowledge. Most likely your health challenge would get revealed innocently by a co worker or friend or if employer has a means or policy for checking social media. Why don't you start speaking of CF fund raising in a subtle way not revealing what you are concerned about and "test the waters". "Maybe you know someone with CF and think it needs your fundraising or educational assistance. Good luck.

 

[welshwitch]

Thanks all. This is great info and helpful if something happens to me health wise down the line. I'd like to be able to include my work if I was ever a big part of a fundraiser without getting singled out/penalized. Until then, I'm going to continue testing the waters. I work for a large nonprofit and I've observed that they have been helpful and supportive when others have had health challenges that they chose to be public about. I'm naturally quiet about my health and don't like to make a big deal about it. But if something serious were to happen I'd like to know that they "have my back." This info is good to know about.

 

[Deirdre Kay]

I don't see any need to directly disclose having CF to your employer. I also don't see why you couldn't be a public CF advocate, fundraising and speaking about CF at the same time. I have only disclosed CF when necessary, and only through the disabilities accommodations provided at university. This has allowed me to work privately with teachers and staff throughout my frequent hospitalizations. There was never a need to discuss my health issues in any manner other than private email. Now that I am beginning to look for work, I am looking into my employment options as a person with a disability. There are legal protections as a person with a disability in the work force, but you should read up on them before you fully disclose such personal information.
I should probably also mention that I have spoken a few times to small groups regarding my personal experience with CF, and I have been actively fundraising for the CFF for the last 2 years. I am much more open about having CF these days, but it's truly only with people I trust.
Anyway, if you don't need to tell your employer, don't. You're a full time worker so you won't be asking for accommodations soon, and you probably shouldn't worry about sharing your CF story with employers or coworkers! Use your best judgment

 

[Simba15]

Yes that is FMLA - not the GINA law, just to clarify for readers.

^^ that is right. If an employer had more than 50 employees it is a federal requirement that they follow this law. The hard part about it- you have to make it to one year of service before you qualify. For me it's why I've stayed with my current employer. I'm not sure I can make it a year without excessive absences anymore. But once you make it 1 year- it gives you 12 weeks unpaid time off each year to use for your condition. Those 12 weeks can be used in 1 hour increments. It protects your job while you are out, they have to have a job for you when you come back.

 

[mommy w/ cf]

I think it depends on the personality of your employer as to whether or not you should disclose your CF.

Personally, I told my boss right up front about it, and he actually responded very favorably. ( I did talk in person, not on paper, and due to my job, I knew it may affect my ability to work at times) Also explaining to him about what cf is and how we have a poor immune system (hence us getting bacterial infections that don't pass to regular people with good immune systems) helped him understand that i am not some walking liability. I do not ever disclose what bugs I an culturing, but because I am open about cf with my boss if he has questions, he has actually been very very understanding when I have gotten sick, due to cf. I just try to work my hardest and best for the company, an they have been super gracious when I am sick.

I am a swim instructor in a non profit organization, and because my boss and some of my co workers know about my cf, I have actually had them cheering me on in all my endeavors (knowing I am battling cf and thriving even through hard stuff). It was super helpful them knowing about my cf when I had to have a PICC line for a few weeks and was unable to swim during that time.

It definitely is up to you though, and a very personal decision! I just hoped hearing a situation where telling an employer about cf has turned out good would help you not feel like being open about your cf is total career suicide. . I wish you the best!!!

 

[LKBamberg]

I've been fired twice from professional jobs. The circumstances were so identical it was undoubtedly discrimination.

 

[windex125]

I hv to agrees with Simba15 DO NOT SAY ANYTHIMG I had a long Time career as well and never wanted any of those sickers on my forehead. To me it was a personal thing,privacy. Also when I had my son I did not tell other mothers as I thought they wld think it was a sickly house. So I must say I hid it for a long time. I don't care who knows now, the best is when I say it people still do not know what it is??? Go Figure. Pat-/59CF