How much have you told your employer?

[Blue Kat]

My Sjogren's chronic pain has been worsening these past several months and I'm wondering how much I should tell my employer about my problems.  Even though I have a desk job, I'm on the computer all day and most days by midday my hands and arms are killing me, but I stay and fight to continue on because I don't want to call attention to my illness. 

There have been a couple of days when I just couldn't take it anymore and left for the day, and while I prefer not to do that too much I also would like my employer to know that there may be other days when that's necessary. 

My main boss is a doctor and I did mention the Sjogren's to him when I was first diagnosed last summer but have not mentioned it to him again, although I know he has an idea of how the illness works and as a result would be understanding.  My concern is with our HR person who is not a very kind, understanding person to say the least.  I worry that she might somehow use this against me down the road.

For those of you who are working...how have you handled your situation with this?

[Pisces24]

I work for a big corporation and have not told any coworkers or my boss about my Sjogrens. Thankfully mine has not gotten to the point that it is a work problem.  I also bang at a computer allll day.

Do you have an FMLA filled out for your SJS?  Family Medical Leave Act.  I would look into that as it would give you some protection.  I think you can take up to 6 wks off a year for what is covered in the FMLA and they have to hold your job or give you a similar one when you come back. Look on web about FMLA or talk to an attorney to find out your work rights. There are laws on what a company can and can't do. Believe me, the company isn't going to tell you and most will not cut you any slack for illness.

I am new to FMLA as I just got mine in late 2009. I got the flu, 102 temp,  etc etc and my work gave me heck about not coming in and putting a reprimand in my file.  I told my gp who was really really ticked - he mentioned about the FMLA and did one for me so work couldn't reprimand me.  Due to my compromised immune system, I get "stuff" easily.

I really wish I could give you more information but forwarned is forarmed.
Good Luck!

[navydad]

As I am on short term disibility from work,, I believe my employer has teh idea that I may be going back to work, I really dont intend to,, My doctor called my insurance thats giving me the checks for disibility and told them that he doesnt see me going back to work and that my nerves are not going to grow back,, As for FMLA,, I do know you have to work for a company for a year before you can apply for that,, My employer knows about my SS and neuropathy,, but how long there going to let me (be off),,,that I dont know,, I just hope I can keep my insurance,, and just make my co-pay,, becasue I sure cant afford the total cost, not evenunder COBRA

[eyeamdry]

Do not tell your employer anything, unless it is obvious like you can't bend your elbow.  You do not have to tell your employer of your illnesses as long as you can manage to work.  In fact, as soon as they know about it, it is likely to have an adversive effect.

I'm not going to write more on it now.  There is lots in the archives if anyone wants to look.  For the gal with carpal tunnel from typing and sore arms.
When you come home, ice your hands and arms down a little being careful to cover the skin.  At night, you can wear braces on your wrists and that helps.  I used to do that when I was working. 

If you work for a big corp in the USA, you are entitled to FLMA, but do not bring out the process until you have to.  Do not confide in co-workers and boses as it can come back to haunt you.  I had to work my way through this 5 yearss ago and into disability.  Lucy

[Bernice]

I agree with Eye, but if it came down to it I would probably have a sit down with the doctor there IF he can assist you in dealing with HR.
If they already got a negative in your profile, then it won't take much for them to boot you, they will use that to prove they are not booting just because they found out about sjs. It will come back up.

Don't trust them to care or understand!

[Harmony]

I also worked for a Dr. It was quite obvious I was having health issues, I could hardly walk by the time I left work. Silly me thought that if I took a week off work I would be rested and feel better. My Dr. (Boss) refused the time off, so I applied for FMLA and was approved. I took the 90 days and still wasn't able to go back after the 3 months of leave. Fast forward 4 years - Just now getting diagnosed and obviously still not able to work.

I was a star employee and loved my job and patients. I miss it terribly. In my case the HR Dept. treated me more respectful and kindly than the Dr. and others I worked for.

Each scenario is different, but I would be cautious as to how much you tell anyone that you work for or with about your health.

Harmony

[warmwaters]

I'm still trying to figure out how to do this, as I may be able to start working again soon (I hope).

Here's a practical suggestion on dealing with the typing. It may be possible for you to use voice recognition software, where you can speak into a microphone instead of typing. I'm just getting familiar with this, but it could be a big help. I'm a writer, so the pain associated with typing is a big deal.

That's the sort of reasonably simple accommodation that your employer should be able to help with.  If you use MS-Word, for example, it's setup with voice recognition. PM if you'd like to get more details.

Good luck.

[eyeamdry]

Please all remember, HR (Human Resource) is not your friend.  You think they are and that they will keep your best interests at heart.  Not so.  Who do you think your boss works for?  I went through this 5 years ago and I researched and bought a book, came through bruised, but with disability and insurance.
I did not tell my employer, but much of my stuff was visible.  Don't offer free information.  You also don't have to tell about your health because of  HIPPA laws etc.  You can always consult a lawyer for a consultation that shouldn't be horrendous.  Lucy

[Epson]

I agree with everything Lucy said especially about Inhuman Resources.  There job is to get around the law a get rid of people without the company being liable in a future law suit, they go to seminars for this and guess who the teachers are? Lawyers that's who, you can fire anyone you want, that's why it's called employment at will.  Oh sure there are some laws to protect people, but there is a way around everything and if you think you can trust any of your coworkers your dreaming.

[eyeamdry]

Epson, if I had not researched this while I was working my way through it, I might have gotten out with the shirt on my back.  There is no use in suing in most cases.  But, so many people believe the b.s. they are told and they end up on their nose.    As soon as your co-workers find out they may be on your case, they will make you look as bad as they can, too.  If you're sick or having trouble with work, HR wants you OUT asap.  Lucy

[Epson]

That's right Lucy, it took me 5 years to settle a law suit with a former employer, most people give up before that or run out of money.

[Bernice]

Eye & Epson,

Words of WISDOM!! Words of WISDOM!

I think it is awful that people have to go through this while dealing with health issues, but thus it life and the truth is in this dog eat dog world no one cares about nobody when it comes to that mean ole dollor bill. That's what it comes down to because if you can not produce for them, then they will not allow you to stand in way or hinder production of dollar bills. Remember time is money!

[louise]

I have not told my employer or coworkers yet. I am more afraid They would treat me as an old lady. I work with mostly 20 somethings. I also have 3 other coworkers with autoimmune diseases .Two of them are close too my age . One is only 25. everyone treats them like anyone else. I have had 3 surgeries in the past year for pinched nerves. I was off for 5 months . My employer was great and still ask at least once a week how I am doing. My employer has been very flexable with letting me rearrange my schedule. I am a stylist so if you don't work as hard you just don't make as much money. I think it really depends on the company and type of job. I feel confident When I do tell people I will be treated fairly. They know I'm a hard worker and if I'm slacking it is for a good reason.If I were a slacker I am quite sure they would use this against me as I have seen them use things in this way for employees that are not valued employees. Not over health problems but you never know.

[harrigan]

But how can you get away with not telling your employer when there are so many 'ologists' to see??  We are told that we have to arrange appointments in after school time or holidays.  Sounds easy but it isn't.  Consultant clinics often end by 3pm and when you are going to rheumy, eyes, ENT, dentists, blood tests, podiatrists etc it just doesn't fit.

2 weeks ago I requested an appointment with School's Occupational Health to see what my rights are.  I know they will then tell the Head about my new diagnosis, but how am I going to get to all these appointments otherwise?  Other colleagues have to cover my lessons if I am off.  It's not as simple as 'Do not tell your emplyer or co-workers anything.' 

I'm going to look for a disabled teachers' forum/network.  I need to know how others manage.  I'll pass it on if I find anything useful.

[DragonflyC]

Harrigan, I also work in a school and understand that scheduling isn't easy.  I book my appointments as far ahead as possible so that I can get slots during school vacations before the kids take them all (not sure how those work where you are, but we get a school calendar in August that spells out the whole year, and we have several days off throughout that people in other businesses do not).  I'll book several appointments in one day if I have to.  If I can't get them in during vacations, I will try to book as many in one day as I can and just take a sick or personal day that day.