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"Coming out" at work

by RayGunter on Mon Feb 24, 2014 4:18 pm

I have a question for those of you that are working full time while dealing with this disease. More specifically, those in remission or are on maintenance and it's not obvious to others that you have cancer. Though I appreciate any ones comments!

I'm relatively young 40 and was diagnosed 2 years ago. Went through induction and 2 SCTs and everything went about as well as one could hope for. I told my immediate 'work' family about my disease right away and that was great. but I kept if from those much higher than me or from other departments.

Now, I'm in complete remission, but doing maintenance therapy once per month. I handle it fairly well, though it's not a walk in the park. I also work full time and have a new boss (my immediate 'work' family has mostly changed)

So, for the most part work doesn't know and it doesn't affect my job much other than once per month checkups/chemo and yearly MRIs and other tests.

And finally on to the question...What are the pros and cons to letting your employer/boss know what's going on? Any recommendations or insight is greatly appreciated.

Thanks,
Ray

RayGunter
Name: Ray Gunter
Who do you know with myeloma?: Me
When were you/they diagnosed?: Sept 2011
Age at diagnosis: 38

Re: "Coming out" at work

by dnalex on Mon Feb 24, 2014 10:19 pm

I don't think there should be any cons, and if there are, I think it's going to be the onus of the workplace to promote a non-discriminatory atmosphere.

Being ill is not a crime, and there should be no reason why you should feel that you have to not tell you co-workers. There's no reason why you should either (unless you want to), or if somehow you need to make alternate arrangements with work.

Best wishes,
Alex

dnalex
Name: Alex N.
Who do you know with myeloma?: mother
When were you/they diagnosed?: 2007
Age at diagnosis: 56

Re: "Coming out" at work

by Ron Harvot on Mon Feb 24, 2014 10:56 pm

I think it is a matter of how comfortable you are with going "public" with your health. I am very public with mine and am comfortable with that decision. For example, I post on this board with my full name. Since my name is on this board it can be accessed by anyone doing a simple Google search on the internet. That would include anyone that I work with and any future employers, if I was to lose my job. Not everyone is comfortable with such public access to very personal information. So, in the end, everyone must decide for themselves how much of their personal life they are willing to share.

Ron

Ron Harvot
Name: Ron Harvot
Who do you know with myeloma?: Myself
When were you/they diagnosed?: Feb 2009
Age at diagnosis: 56

Re: "Coming out" at work

by JBarnes on Mon Feb 24, 2014 11:41 pm

I came out shortly after diagnosis due to the fact that my work hours would be impacted. Plus I figured once you tell one fellow employee it's just a matter of time before everyone knows. However, as employee cuts have taken place twice I've been asked if it would be easier on me if I didn't work full time. I can't help but wonder if management might be thinking due to my disease I wouldn't be too upset if I was laid off. Jerry

JBarnes
Name: Jerry Barnes
Who do you know with myeloma?: Self
When were you/they diagnosed?: Aug 17, 2012
Age at diagnosis: 54

Re: "Coming out" at work

by Russ on Tue Feb 25, 2014 1:12 pm

Ray,

I was diagnosed just over three years ago, and let folks in my office know about the time that my treatment course was determined. My primary reason for this was to explain my continuing doctor's appointments as folks were beginning to get worried, and to get set up for a short-term disability leave during my transplant. For the most part, this included my direct reports, along with my direct superiors, but I have been open with anyone who asks.

There is always a risk that someone might try and target you due to the now known condition, but there are laws to theoretically help protect against that sort of thing, and I find that most people are supportive, which helps the whole process. Being further along and in a maintenance situation like you, I only tend to bring it up now if someone asks. (That said, if I had a new boss I would probably let him know that I had some ongoing doctor’s visits just for communications sake.

Out of curiosity, what is your maintenance protocol? I personally am in for Velcade every other week, with concurrent Revlimid throughout the week. Just wondering.

Be well,

Russ

Russ
Name: Russ
Who do you know with myeloma?: Me, Myself, & I (and a few others)
When were you/they diagnosed?: February 2011
Age at diagnosis: 41

Re: "Coming out" at work

by NStewart on Tue Feb 25, 2014 4:44 pm

I think at the very least that your immediate supervisor should know about the Myeloma. When I was diagnosed I told my supervisor because I had no idea when I might start treatment and if I did how it would impact my work. Fortunately for me I was already out on medical leave for a different medical issue when I was diagnosed. When I went back to work I decided to work 4 1/2 days per week instead of 5. By doing this I was able to schedule doctor appointments on that 1/2 day off and not use up all of my vacation time with the many appointments.

When I did start treatment and occasionally had to go for tests/scans/medical appts at short notice, it really helped that my supervisor had been informed. She was supportive of my needs. I did make up time lost and rescheduled patients who I had to cancel because of emergency appts of mine. As people asked me what was going on I let them know. And, when I was getting ready to be out on medical leave for my transplant, everyone in my immediate work place learned what was going on.

Nancy in Phila

NStewart
Name: Nancy Stewart
Who do you know with myeloma?: self
When were you/they diagnosed?: 3/08
Age at diagnosis: 60

Re: "Coming out" at work

by Christa's Mom on Tue Feb 25, 2014 6:22 pm

I think coming out at work is a mixed-bag.

There are laws that can protect you and make sure you don't lose your job if you need to take time off for treatment, but some of those rights are dependent upon the laws of the state where you work. We live in an "employment at will" state which basically means that EJ cannot be fired for having an illness, but if the company is laying people off because of a lack of work, he can still be laid off.

When EJ was diagnosed it was in the middle of the recession and a number of people in his company were laid off. He decided to tell his immediate supervisors and HR about his multiple myeloma, only to make it difficult if they were going to let him go. He still has his job, but the downside is that they moved him to a new group, and cut off any avenue for him being able to go back to doing what he was doing before.

Lyn

Christa's Mom
Name: Christa's Mom
Who do you know with myeloma?: Husband
When were you/they diagnosed?: September, 2010
Age at diagnosis: 53

Re: "Coming out" at work

by lys2012 on Wed Feb 26, 2014 4:56 pm

I'm in a situation where I'm trying to decide if I should tell or not. I am starting a new job in two weeks. My current workplace knows of my illness as I have worked here before I got sick, then was on leave, then came back to work part time and finally full time again (not recieving any disability or accomodation for the last 1.5 years)

Anyhow should I tell my knew boss I have multiple myeloma? How do you bring that up? how much info should you disclose. I am not in treatment and go every three months for a check up.

I aslo have another issue that I am starting a new job and have been trying to have a baby (had given up on this job as I applied in November then never heard back!) Its a year contract with opportunity for renewal but if I end up on matt leave part way threw I have no idea if they would renew my contract!

Life gets complicated sometimes.

lys2012
Name: Alyssa
When were you/they diagnosed?: 2010, Toronto, Canada
Age at diagnosis: 32

Re: "Coming out" at work

by JBarnes on Thu Feb 27, 2014 12:50 am

I see no reason to tell them you have multiple myeloma if you are only doing quarterly check ups.

JBarnes
Name: Jerry Barnes
Who do you know with myeloma?: Self
When were you/they diagnosed?: Aug 17, 2012
Age at diagnosis: 54

Re: "Coming out" at work

by RayGunter on Fri Feb 28, 2014 4:12 pm

Thanks for all the insight. I appreciate it. For now I think I'll keep it quiet. I'm just not sure what good it will do.

The only way it affects work is I miss a half day once per month for maintenance (which is subQ Velcade, Zometa and methylpredisolone - similar steroid to Dex) and then another half a day a few times per year for checkups and MRIs.

If I get asked, I will be open, because I have been pretty open about it publicly. But I think I'll hold off volunteering the info until it becomes more necessary, ie affects my job more.

I know there are laws to protect us and everything, but that won't stop employers from creatively making things difficult or worse. And in the middle of treatment, that's just not something anyone has to deal with given everything else we have going on.

RayGunter
Name: Ray Gunter
Who do you know with myeloma?: Me
When were you/they diagnosed?: Sept 2011
Age at diagnosis: 38

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