I work full time at a desk job and I have a one and a half yr old and i am exausted all the time. I have only been recently diagnosed and started taking plaquinil a few weeks ago but so far it has not helped with any of my symptoms.
I like my job and I think it keeps my mind on something other than how sick i feel but I just cannot keep up at work and when I get home I literally need to go to bed somedays because I am so tired and in pain. My husband does a lot around the house and with our daughter.
I am wondering if I could ask to work part time or if I should take a short sick leave until the plaquinil starts working.
What do you guys think I should do? Do you work full time? Have you taken sick leave before?
Hi Meg, I had to stop working and have not yet been able to return bc my Lupus keeps morphing into one disease after another. This really frustrates me--and I still fight the urge to run in and fill out applications when I see help-wanted signs.
I am glad you have help from hubs---
only you will know if or when enough is enough, and maybe the meds will work well for you and you can keep your job.
I knew when I had reached my limit and I think we all have to figure that one out for ourselves. But just bc we have to figure it out alone does not mean you are alone in the process. Please know that you are surrounded by people who know how it feels to be in so much pain and to be so tired you literally don't know how you will draw the next breath. So we support whatever decision you make.
Can you talk to your boss and take a few weeks to decide?
Sometimes it takes up to 6 months for plaquanil to start working but for others it helps much sooner.Whatever you decide remember you are not alone---we are here for you and hold you in our thoughts and prayers
I worked at a desk job for many years and also did my hubby’s books for his company. Technically I was working about 60 hours a week (20 at home doing his stuff). I ended up in a nasty flare and had to go out on sick leave from my full time job. After a month I went back part time. My employer was not happy with my doctor only allowing me to work part time (4 hours a day max). They started asking me to go to their doctor and to release my medical records to them (which I refused to do and pointed out to them that it’s illegal for them to even ask!). I loved my job and the people I worked with but after 6 months of fighting with the girl in HR I decided to quit. My hubby was very supportive and decided to make me an “official” employee of his company. Now I work from home doing his paperwork full time. I am very lucky to have had everything work out the way it did.
I think you need to do what works for you and your family. Don’t feel guilty if you can’t do everything! Switching to part time may be a great solution for you. It will still allow you to get out of the house and be around adults. Being a full time stay at home mom of a toddler is a very difficult and at times stressful job! I’m with Oprah “hardest job on earth”. Part time work may give you a good balance.
I am lucky in that my boss is very understanding and I work for the government so our benefits are good. I am going to ask my boss about working part time for the next 6 months and see how it goes.
Ann- It is very encouraging to hear that you worked a full career with Lupus. I hope that i will be able to work like that!
I talked to my boss on Monday and he said that he checked with HR and they could not do any sort of job sharing so basically he said my options are to stay full time and do my job or take a sick leave. I have been with my work for 8 yrs and have worked very hard. I used to go in on weekends, take on extra duties etc. I am very upset about the way my boss was talking, it was like he would rather me go on a sick leave because then he could replace me with someone without a disability. He said "maybe it will be better for you to go on a sick leave because it will be difficult for you to get your work done only working part time- and then I can replace you with someone who can work full time".
I think that sitting at home all day will make me focus on my illness way too much but I simply cannot make it through the whole work week. I am thinking that if I get a note from my doctor to work part time then they are going to have to accept that and reduce my workload to half. The other problem is that i can't get a doctor's appointment until Nov 14- a few weeks away. Also because i have only just been diagnosed and started meds I don't know long term how my health is going to be just that I am very sick right now.
Am I being over emotional? How would you approach this?
That was how it was for me too. I worked part time for about a year on a doctors note. I was in a position that only two other people could do (I worked in technical support but dealt with the accounting side of the software). I handled all escalations in my 4 hour day. Although my managers and the dept director recognized my value, they had no control over Human Resources, who were a huge pain. They wanted lists of meds, future meds, recovery times, etc. I got tired of fighting with them so ended up quitting. I’m in Canada and it is illegal for employees to ask questions about your health. I ended up calling the governments human rights department for clarification on the laws. They wanted to start a procedure against my work but after a nasty round of email that got the HR girl demoted, I decided to quit and not pursue a legal case. It wasn’t worth the stress and I didn’t want my job back. It felt good to stand up for myself and hopefully employees with chronic illness after me didn’t have that problem.
I hope you can find a solution. My experience is on the extreme end of the spectrum. There are other employers who are very accommodating. Hopefully your doctors note will help.
MegLupusNewbie said:
Hi Everyone,
I talked to my boss on Monday and he said that he checked with HR and they could not do any sort of job sharing so basically he said my options are to stay full time and do my job or take a sick leave. I have been with my work for 8 yrs and have worked very hard. I used to go in on weekends, take on extra duties etc. I am very upset about the way my boss was talking, it was like he would rather me go on a sick leave because then he could replace me with someone without a disability. He said “maybe it will be better for you to go on a sick leave because it will be difficult for you to get your work done only working part time- and then I can replace you with someone who can work full time”.
I think that sitting at home all day will make me focus on my illness way too much but I simply cannot make it through the whole work week. I am thinking that if I get a note from my doctor to work part time then they are going to have to accept that and reduce my workload to half. The other problem is that i can’t get a doctor’s appointment until Nov 14- a few weeks away. Also because i have only just been diagnosed and started meds I don’t know long term how my health is going to be just that I am very sick right now.
Am I being over emotional? How would you approach this?
Also… Just for the record: when I worked part time I was only paid for part time work. I never expected my employer to pay me for work I did not do. That was one of the things that made it more frustrating. I was taking half the money and although I was only physically present 1/2 the time, I still got phone calls with questions etc., I didn’t mind at all.
Roni said:
That was how it was for me too. I worked part time for about a year on a doctors note. I was in a position that only two other people could do (I worked in technical support but dealt with the accounting side of the software). I handled all escalations in my 4 hour day. Although my managers and the dept director recognized my value, they had no control over Human Resources, who were a huge pain. They wanted lists of meds, future meds, recovery times, etc. I got tired of fighting with them so ended up quitting. I’m in Canada and it is illegal for employees to ask questions about your health. I ended up calling the governments human rights department for clarification on the laws. They wanted to start a procedure against my work but after a nasty round of email that got the HR girl demoted, I decided to quit and not pursue a legal case. It wasn’t worth the stress and I didn’t want my job back. It felt good to stand up for myself and hopefully employees with chronic illness after me didn’t have that problem.
I hope you can find a solution. My experience is on the extreme end of the spectrum. There are other employers who are very accommodating. Hopefully your doctors note will help.
MegLupusNewbie said:
Hi Everyone,
I talked to my boss on Monday and he said that he checked with HR and they could not do any sort of job sharing so basically he said my options are to stay full time and do my job or take a sick leave. I have been with my work for 8 yrs and have worked very hard. I used to go in on weekends, take on extra duties etc. I am very upset about the way my boss was talking, it was like he would rather me go on a sick leave because then he could replace me with someone without a disability. He said “maybe it will be better for you to go on a sick leave because it will be difficult for you to get your work done only working part time- and then I can replace you with someone who can work full time”.
I think that sitting at home all day will make me focus on my illness way too much but I simply cannot make it through the whole work week. I am thinking that if I get a note from my doctor to work part time then they are going to have to accept that and reduce my workload to half. The other problem is that i can’t get a doctor’s appointment until Nov 14- a few weeks away. Also because i have only just been diagnosed and started meds I don’t know long term how my health is going to be just that I am very sick right now.
Am I being over emotional? How would you approach this?
I am still shocked that emypolyers would act like this when you are sick. I am now going through the same sort of thing with HR at my work. They want all these forms filled out from my doctor on a regular basis and I feel like my private health infomation is being reviewed by people who have no clue what lupus is.
It feels like they think it would be easier for me to quit or take disability than to work with me. I need my job for income and also to get out of the house. Unfortunatly i live in a small town and there are not a lot of places I can work.
Oh god I don't know what i am going to do. This situation is very stressful!
Hi Meg, Idk if this would help, but is there any way you could write a letter to the editor for your newspaper and only send it in after your work people have a chance to read it? sometimes awareness and transparancy give us the levergae we need.
truth buckled around your waist, vest of right-action, faith as a shield and lots of prayer and scripture before and while you are writing the letter, feet shod with zeal for a good cause.
then once you find solid ground or a plan that might work well for you and for the company, can you stand on it, draw strength from the simplicity and beauty of the plan and put your hope in it, trusting that God will help move you forward?
idk if that makes sense or not...or if it is even in your best interest to saty on that job...maybe God has somrething better planned for you---who knows.
but whatever you decide or which ever way you go, you have the support of all of us here.
When I brought my forms to me doctor he crossed out three pages and wrote “this information is private and not required”. That’s actually what started the ball rolling with my fight. My doctor was very shocked they would even ask the stuff they did. The only thing he wrote on it under reason for absence was “complications due to PsA” and then completed the section under work restrictions.
I am in Canada and the laws limit the information employers are allowed to ask. I was in contact with a supervisor at the Human Rights Commission on a daily basis. She was very upset with the company I worked for due to the questions on that form and subsequent email I received from the HR Dept. When it started I didn’t know what was allowed and what wasn’t. Here in Canada, a note from any licensed doctor has to be abided by. They can not request you see their doctor. They can not ask specific medical questions, including your dx, your medications or your expected recovery time. They also can not ask to have forms filled out repeatedly (ie: if the doctors note says 6 months at part time another form or note is not required until that 6 months have passed).
Now with that said… The rules completely change if you are trying to claim any type of disability insurance. In order to receive Insurance money you have to jump through whatever hoops they want you to in order to “prove” your entitlement.
In my case, I asked for nothing and was content with half the pay. In fact I was on an annual salary structure and had to resign my contract at half the pay the first day I went to part time.
I hope you are able to find a good compromise with your company. Although I had the law on my side, it was a very stressful situation to be fighting with a dept every day just to have they follow the law. I was very relieved when I left.
Good luck!
MegLupusNewbie said:
Hi Roni,
I am still shocked that emypolyers would act like this when you are sick. I am now going through the same sort of thing with HR at my work. They want all these forms filled out from my doctor on a regular basis and I feel like my private health infomation is being reviewed by people who have no clue what lupus is.
It feels like they think it would be easier for me to quit or take disability than to work with me. I need my job for income and also to get out of the house. Unfortunatly i live in a small town and there are not a lot of places I can work.
Oh god I don’t know what i am going to do. This situation is very stressful!
If this helps, this is how the lady at human rights explained it to me:
If you have PsA with spondylitis and require accommodation such as a proper chair, a doctors note stating “fitted chair required due to back pain” is all that’s required. She said my doctor actually provided more information then required by including PsA on my form.
She did say that in some cases it is in a persons best interest to reveal medical information (ie: if you have epilepsy and need ativan administered during a seizure or allergies that require an epi pen) but even in those cases they cannot require you inform them.
Just keep in mind that if you are trying to claim any type of disability insurance all this rules go out the window!
I am also in Canada (Ontario), so I guess the laws are the same. Like you say the law is on your side but I don't want to have to fight for my rights. When you are already sick and stressed with everything adding more stress is not a good idea. I am not trying to get disability I just want to work part time and get a part time workload.
HR gave me a letter and form with all types of questions that I think are a bit much - details about my illness and the problem with lupus is that there is no "expected recovery time" they did ask me what my diagnosis was and what meds i am on. As we know it is very unpredictable. They actually wanted to send the letter directly and talk directly with my doctor.
Mine wanted that too… Me to see their doctor, when I said no they wanted their doctor to talk to mine to which I also said no.
Now I will admit I’m a stubborn woman and once they got me ticked off and I knew my rights… I was not giving them anything I didn’t have to!
The dicision is yours…maybe talk to your doctor about what you are willing to share with them. Also read any releases you sign very carefully… They don’t need to know what color your bowel movements are 5 years from now!!
MegLupusNewbie said:
I am also in Canada (Ontario), so I guess the laws are the same. Like you say the law is on your side but I don’t want to have to fight for my rights. When you are already sick and stressed with everything adding more stress is not a good idea. I am not trying to get disability I just want to work part time and get a part time workload.
HR gave me a letter and form with all types of questions that I think are a bit much - details about my illness and the problem with lupus is that there is no “expected recovery time” they did ask me what my diagnosis was and what meds i am on. As we know it is very unpredictable. They actually wanted to send the letter directly and talk directly with my doctor.
Did u say you worked for the government? Is it directly or with a sub? I find it outrageous that a government office can’t even abide by their own rules!!
MegLupusNewbie said:
I am also in Canada (Ontario), so I guess the laws are the same. Like you say the law is on your side but I don’t want to have to fight for my rights. When you are already sick and stressed with everything adding more stress is not a good idea. I am not trying to get disability I just want to work part time and get a part time workload.
HR gave me a letter and form with all types of questions that I think are a bit much - details about my illness and the problem with lupus is that there is no “expected recovery time” they did ask me what my diagnosis was and what meds i am on. As we know it is very unpredictable. They actually wanted to send the letter directly and talk directly with my doctor.
I work directly for the provincial goverment- which is why i was so shocked with it being so difficult. We regularly get training on diversity and accomadating public clients with disabilities etc. We also have good benefits and a strong union and collective agreement. I did wonder why is it that in our collective agreement it says that for sick leave a doctors note is sufficient but HR want me to get all these forms filled out. Are the laws you are talking about Federal or Provincial?
I believe the Human Rights Commision is federal. I Wonder if you went to HR and told them you didn’t feel comfortable releasing that much information or if your doctor did what mine did… Would they back off? Clearly they should know what the laws are and abide by them. Maybe this is a standard form (one you would also use for disability insurance)? I don’t understand it at all. The lady I spoke with was a supervisor at human rights. When I asked initially I was told yes i had to release the info to get disability. When I explained I wan’t trying to get disability they weren’t sure and had to have the supervisor call me back.
I think in most cases people are trying to make a claim for disability and HR may not really know how to deal with someone who is just trying to decrease their hours due to medical.
MegLupusNewbie said:
I work directly for the provincial goverment- which is why i was so shocked with it being so difficult. We regularly get training on diversity and accomadating public clients with disabilities etc. We also have good benefits and a strong union and collective agreement. I did wonder why is it that in our collective agreement it says that for sick leave a doctors note is sufficient but HR want me to get all these forms filled out. Are the laws you are talking about Federal or Provincial?
Besides just being difficult (which I can deffinately be when I want)… My biggest concern with giving medical information to my work stemmed from my decision not to take prednisone at the time. During that flare my doctor suggested it… We went through the pros and cons and I decided not to take it unless I had to. My concern was how would they view that decision…that I wasn’t as sick as I said, that I wasn’t doing everything in my power to get better or would they try to force me to take meds I didn’t want in order to keep my job? What made their doctor any more knowledgable than mine? Their’s didn’t know me and what else I had to deal with healthwise. It’s a slippery slope.
When I walked in with the forms to my doctor, I asked him if they could make me take prednisone… Innocent enough question but it got his ire up and is the reason he put the note on the form. That started the whole cascade for me and in the end I quit because I didn’t want to keep fighting with them.
I am glad that you and your doctor stood up for your rights. It is too bad that it had to come to you quitting your job. I really hope that my situation will be resolved a lot more easily - I can’t afford to quit my job. I will talk with my doctor about what info i should release. I am also worried about the HR people making judgements about treatments and medical advice - they are not doctors and they certainly don’t know my medical history.
I know this is an old post but I am still struggling with my work and hoping that some of you might have been through this and have advice.
I have been working part time since November, I had to get paperwork filled out by my doc to get this, and my work want him to re-evaluate it every 3 months since he would not give a recovery date.
When I went to part time hours they did not reduce any of my workload- a lot of what I do is meetings and paperwork. So the files kept building up and I was stressed out at not getting my work done. For a few weeks in the new year I felt good and worked full time, was able to get lots done but am in a flare again and can't handle doing 40 hrs a week.
There is a job opening at my work for a clerical position - which I would find easy and less stressful but also boring and depressing as I am educated and currently in a job that I find challanging and exciting (when i am well, when I am not well I find it stressful).
It feels like I can't win. If I work full time I am so tired and sick at the end of the day but my work gets done, if I work part time I can't get my work done but am able to have a bit of energy at the end of the day for my family.