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Discussion Starter #1
Hi,

I would really appreciate your advice about work and Lupus...

I was diagnosed in September last year with 'mild' Lupus so I am still coming to terms with this disease. I mainly suffer from bad joint and muscle pains as well as fatigue and feeling flu-ey. I have struggled on with a demanding and quite stressful job which involves a longish commute (80-90 minutes each way). I've had to take a few days off here and there when my Lupus has flared up and I have had to let people down a lot which I feel bad about.

I had a flare up just before Christmas and thought that a couple of weeks off would be just what I needed. However, when I went back to work last week I almost immediately came down with a couple of infections (kidney infection and infected cyst on my back). My GP has given me two lots of antibiotics and a short course of steroids (I'm also taking plaquenil and mobic) to help clear it up. With the support of my GP I'm going to take a couple of weeks off work to clear the infection and try and get on top of the flare. However, I'm really struggling with the following:
- What should I say to my colleagues at work (they must be wondering why I am taking so much time off)?
- Should I be doing a demanding job (I do get stressed and anxious) and what are my rights if I want to change job due to my health?

I am also worried about when I do go back to work and that it will stress me out again and put me back into a flare. Ideally I would like to take a few weeks off to really try and get on top of the disease but I'm not sure whether my GP will support this and what to say to work about it. And sometimes I start feeling guilty and think that I should really go back to work...

Ahhhhhhh :eek:, I'd appreciate your advice and to hear what you've done if you've been in simiar situations.

Thanks :)
Meriel
 

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Hi Meriel,

I am in the US and I am sure employment laws are a bit different over in the UK so take my advice here with a grain of salt.

Based on MY previous work experience and how employees and employers can and will discriminate against you once they know you have a incurable disease.....I would not recommend you share your personal business with anyone.

I am also not a believer in lying, so with that being said you may just tell them you have been sick and had a tough time shaking it and getting back up on your feet.

Now, in the US there are laws to protect employees under the LAD and ADA. (Laws against Discrimination and Americans with Disabilities Act) Under these laws it specifically states that if you have a illness and there are more then 20 employees in your company....you should be able to move to a less stressful job without fear of loosing your job. It boils down to how your illness could create a un-due hardship on the employer...thus the reason why they ask how big the employer is.

I hope this makes sense yet again I am sure the UK laws are a bit different. If you are a good, long standing employee with a decent track record I would like to think your employer would work with you and not against you but then again I do believe that employers all over the world are just not as dedicated to employees as they used to be.

Walk lightly here and keep your personal business to yourself. If you need a work place accommodation then ask your doctor to write for that request and be specific as to your limitations.

Hope this helps some.:wink2::wink2::wink2:
 

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rockstar!
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In the US, we also have the FMLA (Family & Medical Leave Act) which can protect your job if you need an extended break. This requires that you have a doctor fill out some paperwork that states you have a chronic condition that is beyond your control, blah blah blah. It explains what the diagnosis is, what it means for you and your job, how long the periods of incapacity may be, etc. My doctor basically wrote "SLE. Will have for life. Periods of incapacity will completely vary and are unpredictable." Hahah.

Anyway, the point is that you submit this paperwork and it basically verifies your illness. FMLA lets a person have up to 90 days worth of paid (if you have paid leave) or unpaid work per rolling calendar year. So...this means that if I ended up in the hospital for a full month, I would be legally covered and would NOT lose my job. However, if I didn't have my FMLA paperwork in, then I would not be legally covered and could put my job in jeopardy by missing work.

FMLA is a wonderful thing...does anyone know if you have something like that in the UK?

kit
 

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Meriel, There is still a good chance you will improve with treatment. It is early days yet. Having said that there is no way I could do the commuting you do , much less a job as well. Does your work have an Occupational Health Department. They can be good people to get on board.

Obviously your Colleagues need to know you are not well, but given that you don't know the long term outlook and may improve, and also that you are still coming to terms with your illness yourself, I would be a little careful about over explaining things at the moment.
I hope this helps.
x Lola
 

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Perhaps you can discuss with your employer easing your way back into work this time. When you feel up to returning, try going in for just 4hrs at a time. See how you do, instead of jumping in with both feet.

It really is ok to say you can't do it all. We aren't wonder women here, just human beings. We all do what we can do, and 100% is all that we have. Some days the best I can do is get out of bed and get dressed. Other days I can accomplish alot. Learn how to pace yourself, and you will find you get more done in the long run.

Be well!
 

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Discussion Starter #7
Thanks for all the advice :) We do have an occupational health department and I've asked to see occ health physician.

I'll think very carefully about what I say to my colleagues...and hopefully my health will improve and then they will be none-the-wiser. And yes, you're quite right, I do need to pace myself and I'm not very good at that yet :rolleyes:

Best wishes
Meriel
 

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Meriel, Learning to pace yourself is a slow process. Sometimes it is simply not possible to drop things all at once. We are all here for you, and no one is going to compare what you do with what they do, we are all differently affected physically but we all know the emotional and practical sides of this disease.
x Lola
 

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Hi, you've gotten a lot of good advice and I'm not sure what I can add, but I will put in my 2cents worth.

If work makes you sicker and leaves you without the energy or ability to enjoy real life, then you don't belong at work. I know a lot of people - maybe most -- with lupus manage to carry on in their careers. I'm one of those who had to stop working completely. Every time I think I will get back into freelancing a bit, it ends horribly. So I will tell you that some times it comes down to accepting that life has changed. I don't know how it will be for you. I'm hoping you will get back in the swing of things and keep right on with life like always. But if you can't, just know that a lot of us are in the same boat and understand.

Sunny Hemphill
 

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Hi Meriel,

Your situation is so very similar to mine.

I have been diagnosed and on medication (Plaquenil and Amitriptyline) for about 5 months now. I have days where I feel ok and days where I could crawl back into bed and be quite happy to stay there - happy but exhausted!

I work part time and find that in work I am able to keep going (probably adrenaline) but then feel I need the next day to recover. Thankfully I am working alternate days right now which means I can do that. It does mean that I am beginning to feel I have no quality of life outside work and it's demanding keeping house and home and family going.

I decided in December to take some annual leave that was due to me. I took two weeks off in December and then went back for two weeks (I work as a Chaplain and Christmas is a busy time!!). I have just had another three weeks off and go back next week. I am going to watch myself and see how I feel after this extended break.

I have told my immediate boss and colleagues that I am having to learn to live with an autoimmune condition that causes fatigue but not said much more. If I am able to get the balance right, I feel I will be glad I didn't make too much of it.

I am becoming resigned, however, to the fact that if I cannot manage to keep family and work going, then my family must come first and I will stop my work. This will not be easy as I love what I do.

I would say, take one day at a time. From what I have read on this website, this condition changes and, with medication and pacing yourself, can be managed. Who knows how you (and me!) might feel in 6 months time?? I am sure the right way forward will reveal itself day by day - sometimes, when we give ourselves time, the right path has a way of unfolding ahead of us.

I wondered about talking to my doctor for advice if work becomes impossible. He might have good observations about whether it is wise to take some extended sick leave or apply for disability or maybe some other approach I haven't thought of yet.

I hope you are able to decide what is best for you.

Take care xx
 

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Hello
The things you have been told about the US laws are all true and they can be taken advantage of as needed.
However as a supervisor in a large comapny I also know some information that is used by companies that many do not know or may not have come into contact with.

While you are able to switch to a less tasking job the ability to do that means several things.
Less tasking has to be available, If not then you have just told your employer that you can not handle your job.
If less tasking is available then you have to be qualified to do that job. A easier position may require training that you do not have. A company is not required to provide that training to you.

And if it is a large company the easier position can be in any location they have work. So they can tell you yes we have an easier position for you. It is in East Africa. They will be expecting you in one week.
Doing this they have done what the laws say they have to do and if you turn it down they have the answer "we offered a easier position and they turned it down or refused to do it."

Be very careful with anything that you do and check out all angles for your company before you do it.
If you ask for a easier position be sure you know one is open and you are trained to do it.

The companies know the laws and they also know the angles on how to get around it.
You are in the best position to evaluate how it will go for you if used.
The head supervisor and your relationship with them and the number of years you have been with the company can make a big diference on how you are treated.

I have seen it go good for someone and have seen it go bad. It all depended on how my supervisor decided he wanted to handle it.
 

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Meriel,
I am in the usa so I am not sure that advise about your rights would be the same as here. I would like to say that it is a hard choice and your right a struggle. I have to ask is there any part of your job that could be done from home on a pc? I am not sure how close you are with your boss or co-workers, but I can share what I did for what it is worth. I got hired on with my bosses boss knowing I have lupus. Since I had not had much problems with it thought it would never be an isssue with my work. However, in the past 14 months it has be come a big issue and even more so since September of 2008, when my gp said she would like to see me quit my job. I had a reaction and it was not lupus related this time. I told the doctor I would cut back some hours but I would not stop working. I had to pull over to the side of the road when it hit me, finally. I called my boss at home and talk to her ( a sobbing mess). She assured me that she would work with me about my job and do what she could for me. I told her I needed to speak with my co-worker that I did not want them to think I was getting special treatment ( which in fact I was). So I told them ( another sobbing mess), but was surprised that most were understanding about it.

I have found that by being honest with all involved ( and they are involved you work with them) it makes thing go better if they understand why you are taking time off, not able to do the same things you did before, and often need to just rest in a corner for a half hour if possible sometimes. It has been hard on me but some of my co-workers have stepped up and made it a little easier on me and maybe they would do the same for you if you let them. I also let them ask me questions if they had any when I told them what was going on. A few had not idea that I was even sick to begin with and wanted to know more about what was wrong and why I didn't look sick. So then you have a chance also to educate people about lupus.
I hope this has helped you in some small way.
Tammy
 

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Hey Meriel

Everyone is giving good advice so far but just thought I would give you my experience. I was diagnosed with "mild" Lupus in 2007 and started treatment in the July. I was finding life a struggle, I couldn't keep up at work I was making stupid mistakes, I had crippling fatigue, couldn't cope with with working 45 hours a week often without a lunch break. My home life was suffering I am surprised my husband didn't ask for a divorce. I had asked to reduce my hours at work but the director I spoke to was a bit off about it. Anyway we had a new director join in the partnership who was much more approachable. Any way in Feb last year it all came to a head. I went to my GP and fell apart in her surgery. She suggested to my employers that I work no more that 30 hours a week for a 2 week period. Needless to say this is how it has been ever since and it has been the best thing I have ever done.

I feel I have been lucky on the whole as my bosses have been really supportive and have tried to reduce my stress levels and make sure I am ok. I get the odd comment from one or two members of staff (the ones that don't do illness and tend to be less tollerant) it may not be directed at me but little things I am still touchy about. I do often feel guilty about reducing my hours but it needed to be done really. The bosses know when I am not right and quite often will send me home. I have been really lucky I feel. I am now starting to get some form of a life, I have more "better days" but still have bad ones! I like my job and feel if I gave up work I would be lost.

Don't know if this helps, I hope you manage to find a balance.

Take care

Claire
 
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