View Full Version : Telling your employer and a big rant...

04-25-2006, 07:06 PM
It's been a little over a year now that I've been diagnosed with lupus, although I suspect that I have been flaring for at least two or three years. For years I went to the doctor with complaints of alopecia, joint pain, extreme exhaustion, headaches, troubles with my memory when I USED TO HAVE photgraphic memory. For all those years, all the doctors said I needed to manage my stress or take a vacation. Finally my body really freaked out and I had a huge arthritis flair. I was finally diagnosed with SLE... I've done pretty well, but I'm not in remission. I'd like to be, but as close as I may get something always shows up. In December I had a flare again, I'm coming down from it but I'm feeling exhausted again. I'm also showing symptoms of Sjogren's... Yay... more to worry about....

Here are things that make my situation worse:
- I no longer have health insurance because I'm not a student anymore
- I graduated college and am having a really hard time finding that job
- I feel really crapy, so my mood's been really crappy
- I'm having a hard time getting off of prednisone
- The only person I really talk to about how it feels to have lupus is my boyfriend (since we live together, he sees it first hand), and he has recently complained that he feels I'm looking for pity. (I swear I'm not, but I have no one else to share this all with, besides, if I can't describe how I feel to the man I love, who can I tell it to?)
- I'm beginning to get really depressed

I know that my situation could be so much worse, and that healthwise, I'm not that bad (at all). But I'm suffering here, I don't know what to do. I don't have anyone to talk to.

Can anyone offer me any advice at all? Please?

Also, as I'm job hunting I'm wondering whether I should tell my future employer about having lupus... Any ideas?

04-25-2006, 10:56 PM
My husband thinks I act sick(er) for pity, also. It breaks my heart. I can definitely relate and feel your pain in that situation.

I, personally, would not tell a potential employer until after I was hired unless I could not perform the essential functions of the position with or without reasonable accommodation.

04-27-2006, 04:16 AM
Hi Brazilianbanana25:
I know that the question about should you or should you not let your employer know about your illness is a two-sided blade. On the one hand, they may not hire you because of your illness and then on the other hand, if you need accommodation once you are hired, you may not qualify because you did not inform them of your illness when you were hired. Also, many jobs will fire you if they find out that you lied on your application (because most job applications will ask if you currently have any serious or chronic illness). So, it is a dilema!
I sued my employer prior to my retirement. One of the things that they tried to claim was that they had no knowledge of my lupus when I was hired. The reason I won my suit was because my attorneys found my original application where I let them know that I had Lupus..so this information was provided to them before I was hired. They hired me with the disease and therefore wrongfully tried to terminate me because of it. I won that lawsuit and then promptly retired!!
With reference to our loved ones who accuse us of trying to get attention and/or sympathy when we talk about how Lupus affects us:
I always suggest that it is just as important to educate out loved ones about Lupus as it is to educate ourselves. Because this disease is called SYSTEMIC LUPUS ERYTHEMATOSUS - just by virtue of the word "Systemic" tells us that Lupus affects the entire body, rather than a single organ or a single body part. Therefore, we have numerous symptoms
"Lupus" is a chronic (meaning, it never really goes away), inflammatory autoimmune disorder. It affects the skin, the joints, the kidneys, and other organs.
"Erythematosus" refers to the affects that Lupus has on the skin (redness, lesions, rashes, etc.)
So, if one were to just look at the name of our illness, it would tell you immediately that we suffer from multiple symptoms, all of the time and all over our bodies and even our organs. So, when every part of us is affected, then it stands to reason that something, somewhere is hurting ALL OF THE TIME!!
I would strongly suggest that you purchase some book, pick up some pamphlets or download some sites for your loved ones to read so that they can be as aware of your illness and how it affects you as you are. It is just as important for them to know that your chronic symptoms are real and not a way of getting attention. Most of all, they need to know that you would love to have just one day when there were no symptoms to complain about!!
I wish you the best
Peace and Blessings

04-27-2006, 10:30 PM
Oh goodness. I apologize if my post was misleading. No. Do not lie. I was going by my recent experience with job applications. They only ask if the applicant required reasonable accommodation. I thought that discrimination laws prohibited any other wording regarding medical conditions. Though, my memory is rusty. :oops:

04-28-2006, 10:57 AM
You are probably absolutely right about the wording on the applications. As I said, I am retired. So (without telling my age) that should tell you how long ago it was that I filled out a job application (like- the ice age -lol)
Therefore, no apology needed :lol:

Peace and Blessings

04-29-2006, 01:15 PM
OK, I'll chime in about telling a future employer....from the employer side.

I work in Human Resources. I'll give you both the LEGAL answer and my answer from personal experience as a "PWL" (Person with lupus)

1. Legally, you do not have to reveal any health condition to your employer prior to, or even after hire. That is, unless it affects your ability to do the essential functions of the job. If you need an accommodation, ask. And be prepared to bring in information from your doctor - probalby a form saying how this affects your daily functions and what accommodations you're requesting.

It is a discussion, not a mandate, from both sides. THey dont HAVE to give you exactly what you ask for, they only have to provide what is reasonable. If you're with a mid sized or larger employer, with an HR department, you'll probalby do better, as they'll have a better understanding of the law.

When you go in, send them to the www.butyoudontlooksick.com "Spoon Theory" - it will help educate them.

2. From the health insurance side, if you don't have health insurance now, select HMO coverage when you go to an employer. Typically HMO does not have a pre existing conditions clause. YOu'll be restricted to a network, but it is so much better than no insurance at all. Try to find a network that includes a primary doc that you trust. You'll do OK. I've had HMO for years - with a good primary, I've always been able to get the care I need.

3. Telling your employer? I did when I thought I needed to - I wasn't putting in the hours I had previously, and I was afraid my work was showing it. When I dropped to a 45 hour week, it took some time to readjust. My employer was fine. Were I interviewing for a job, I would NOT tell them of my lupus. Why? It will only complicate their decision. On the one hand, they'll feel they HAVE to give me the job because otherwise I'll sue for discrimination. On the other hand, they might not want to give me the job because they'll think I'll be off sick all the time. (I've missed only 1-2 days from lupus in 5 years.)

A new job can affect us in many ways - if you are happy with the change, the POSITIVE stress can be exhausting, but you'll swim through it and manage just fine. If you're unhappy with the change (and why take a job you don't want?) you may end up in a flare that will put you off work, and possibly out of a job.

On the other hand, you could take a new job and get hit by a bus on day three. Life's uncertain - so move towards things you think will make you happy, contribute to your mental and physical health, and love the moment!

Many hugs dear,

05-01-2006, 10:01 AM
Hatlady :lol:
As always, that was excellent information. Especially about choosing an HMO!

the wingless one
05-01-2006, 09:52 PM

I TOTALLY feel what you're going through...I am also a recent college graduate and though I did have a job when I was diagnosed I wasn't happy there and started looking for a new job shortly after I was diagnosed. For the positions that required an application and not just a resume, I don't think any of them asked about my health...but I definitely did not disclose the fact that I had lupus to any of my prospective employers.

Unfortunately (or fortunately, depending on how you look at it) I had to see the doctor several times during my probation period and so I ended up telling them so they would understand why I was scheduling all these doc appointments even though I was still being trained and evaluated. They ended up letting me go at the end of my probation period supposedly because they didn't think I was aggressive enough for sales, but I have my suspicions. It turned out for the best though since I didn't really like the culture of the company and am now going back to school.

Because of my experience, I would definitely NOT tell any prospective employers about my lupus. Also, the job that I lost was as a recruiter, and I can tell you from the recruiting/HR standpoint that you would definitely be "red flagged" by anyone looking to hire you if you let them know you had lupus beforehand. From what I understand, once you are hired and past your probation period it would be REALLY difficult for a company to fire you because of the lupus - it would be considered discrimination since lupus can be classified as a disability. Big companies are especially afraid to fire people who have grounds to sue them. My fiance's company even keeps this guy who slacks off all the time and is pretty much useless just because he has a disease that can be classified as a disability. Not that you'd be like that of course =)

As far as looking for a job goes, depending on your field I would definitely recommend getting in touch with some recruiting agencies because they can be really helpful sometimes. Just be careful because recruiters are pretty much just in it for the money and will sometimes try to "sell" you on jobs that really suck. As long as you are firm with them and don't let them pressure you they can be an asset.

It really sucks that your boyfriend doesn't totally seem to get what you're going through...It's hard enough having acquintances and coworkers question how sick you are...I can't imagine how I'd feel if my fiance accused me of looking for pity when my joints are aching and I feel like crap. Maybe you should ask him to come along with you to some doctor's appointments so he will be more involved and more understanding of exactly what you're going through? That is, of course, assuming he doesn't already go with you.

My mother was just diagnosed with Sjogren's today and I am suspicious that I may have it too...something I need to ask my doctor about at next month's visit. Sigh.

"I know that my situation could be so much worse, and that healthwise, I'm not that bad (at all). But I'm suffering here, I don't know what to do. I don't have anyone to talk to."

I always tell myself that too...that I am lucky because it could be sooo much worse, but the fact is lupus sucks no matter what. And joint pains can be so debilitating. As can the fatigue that comes with lupus. You have a right to feel like crap and I think everyone who lives with lupus is stronger (emotionally and mentally) for it. I guess I'm just trying to say...hang in there...I feel your pain =\ If you ever feel like you need someone to talk to about all of this feel free to email me. My friends ask me how I am doing, feeling, etc. but it would be nice to chat with someone going through the same thing I am.

05-18-2006, 08:28 PM
I know I have a unique situation, but I work for a non-profit and applied for part-time work after I felt well enough to go back to work after 14 months off of work due to Lupus. I wasn't planning on telling right away about Lupus, but because I'm such an open person and because of the conversation and lapse in my resume, it just came out. They wanted me to work full-time (take 2 part-time jobs), but I said I couldn't and would need one full day off a week to rest and know I had the availablilty for Dr. appts. They hired me and I've been there a year. The executive director has had cancer 3 times, so totally thinks health is the most important thing, and my new boss has ankylosing spondylitis (I butchered the spelling) - an autoimmune disease. She has been in the hospital with Lupus patients as roomates, gets flares, and TOTALLY gets it.

I think I'm the luckiest employee in the world (except that I make no $$)

06-07-2006, 06:56 PM
Honey, I would take happiness and peace of mind over $$$$ ANYDAY!! I used to say a little prayer everyday before I got to work-"Just let me get through this day"-now I say"Just let me make it through this hour!!" I work on a production line with a digital clock right in front of me and just watch the minutes of my life tick by knowing that each one can never be replaced or relived. I would give my eye-teeth to be able to perform a job that I got some satisfaction from. Unfortunately, I am not in a position to change jobs, so I just thank God that I have been able to hang on to this one!! You are lucky to be surrounded by people that have an understanding of how important your health is! Guess I'll have to settle for just being able to pay the bills :lol: Just think about all the people who don't have either one to be thankful for-how depressing is that? I'm going to find some CALGON!!