I am recently diagnosed and still kinda getting used to this idea myself. I am still working, but my counselor and husband suggested that I look at alternatives, maybe reduced hours and a different job. I have a few trusted friends at work that I have told about my lupus. My job doesn't make any allowances for disabilities or illnesses - you can either do the job or you're out! I got alot of ridicule when I wasn't working any over-time and was limping so bladly because of my feet swelling. Sometimes I just want to tell my bosses, I am sick, very sick. But I am keeping it hidden, and taking it one day at a time, until we determine if I should keep working or have surgery for a ruptured tendon in my right foot. Recovery time from the surgery could be 4 to 6 months, and I would lose my job for sure. It just drives me crazy that I have to be so hush-hush, like I have something to be ashamed of.
You have nothing to be ashamed of because you are sick. You need to do the best thing for you and your family. I am sure you are in pain and stress doesnt help your lupus. Maybe you should talk to an employment attorney to see what your opinion are. The Americans with disability act might help your situation. I am not sure what state you live, but in Florida where I live it is an at will state. Employers are not support to hassle you about being sick. I understand your struggle. I too was give a lot of crap for being sick. In fact, I was fired from my last job because I was on probation and got vasculitis in my legs, which caused me to be out of week for a week. It is hard to believe that American employers are like that.
Sorry to hear about this situation your in but to be quite frank (Deenie & Ann) have both given excellent advice on how you should go about the situation...but i will say this never and i mean never be ashammed of your illness.
I am in Indiana, and it is also employ at will state. Management's attitude is unforgiving, and they will say if you don't like it there's the door - they can have a temp worker in here tomorrow. I have an appointment with Vocational rehab, to see if they can help me. I have a degree, and I'm underemployed right now and I would like to keep working, but if I have to give up working to be healthly that's what I'll do.
Thanks for all the great advice!
Trisha
Dewing3569 said:
You have nothing to be ashamed of because you are sick. You need to do the best thing for you and your family. I am sure you are in pain and stress doesnt help your lupus. Maybe you should talk to an employment attorney to see what your opinion are. The Americans with disability act might help your situation. I am not sure what state you live, but in Florida where I live it is an at will state. Employers are not support to hassle you about being sick. I understand your struggle. I too was give a lot of crap for being sick. In fact, I was fired from my last job because I was on probation and got vasculitis in my legs, which caused me to be out of week for a week. It is hard to believe that American employers are like that.
Oh my god hun! This is soooo messed up. I can see why u are so stressed out and thats even worst on your Lupus! Stress is a huge trigger! I wish you would just tell them stick that just were there sun doesnt shine and take care of your health. Ofcorse I understand you needing a job to pay bills and so on, but still. I hope this works out for the better. I will be praying for you.
Even if you live in a demand employment state there are laws that employers must adhere to regarding the disabled, see an attorney that specializes in the Americans Disability Act (many times the first consult is free). Knowledge is power and sometimes protection. Depending on the severity of your disease have you considered filing for social security disability? I used a company called Allsup and they were really good. They did take a portion of my back pay but I thought it was worth it to have the help navigating the governments maze to get approved. Ultimately you should do whats right for you and your family. I hope it all turns out well. God Bless
You can apply for ADA at all jobs, so look into the resources available through the law for disabled persons. Don't assume you have to just bare the pain.
I have a co-worker who is deaf, and my employers didn't turn on the close captioning on the tv for a video webcast last week. He was standing beside, and I asked if he could understand any of it, (he reads lips) and he said no. He was upset. But they do this to him all the time. He has a visible disability, so you can imagine what they would think of an invisible disability. I am considering apply for disability, if I can't get some help with Vocational Rehab.
Trisha
Julie said:
Even if you live in a demand employment state there are laws that employers must adhere to regarding the disabled, see an attorney that specializes in the Americans Disability Act (many times the first consult is free). Knowledge is power and sometimes protection. Depending on the severity of your disease have you considered filing for social security disability? I used a company called Allsup and they were really good. They did take a portion of my back pay but I thought it was worth it to have the help navigating the governments maze to get approved. Ultimately you should do whats right for you and your family. I hope it all turns out well. God Bless
regarding the co-worker whom is deaf, he is going to fight his own battles. I'm glad you are advocating for him, but, we each have to choose our own points of battle. In my opinion, the lupus battle and getting reliable employment to meet your needs is a battle worth concentrating on. Sorry, if I sound harsh but this is how I see it.
Even-though Lupus is an non visible disability and most lupus patients with SLE tend to have beautiful skin during non flares and look very healthy, creates an advantage for us as we are not wasting in front of people but, then the disadvantage is its hard for people to understand what is wrong with us. I don't think about how other people will react, I consider how I feel in selecting the help needed to continue being successful. Unfortunately, disability is not a viable option for my life style. I am searching for other gainful employment within my profession and just praying I don't flare during an interview (that happened last time, I could not remember the question and answered what I last remembered, needless to say the interview tanked.)
I have read this and re-read this, and all I can really say is that I feel you need to decide what is best. You know your employers and your body better than anyone. I will support you either way. Your dilema us surely understandable.
Yes, I agree with you - I just have a new understanding for what he has to go thru. Actually, many times I forget he is deaf - because he functions so well. I know he can handle his own battles, as he has all his life. My job provides the health insurance for my family, so that is a concern. But I am not happy there at all. I have just been too exhausted to try to concentrate on looking for anything else. I have just been on meds for only a month, and not really sure that I notice any difference yet. Perhaps when this improves, and I feel better it will make a difference.
Unshoreandscared said:
regarding the co-worker whom is deaf, he is going to fight his own battles. I'm glad you are advocating for him, but, we each have to choose our own points of battle. In my opinion, the lupus battle and getting reliable employment to meet your needs is a battle worth concentrating on. Sorry, if I sound harsh but this is how I see it.
Even-though Lupus is an non visible disability and most lupus patients with SLE tend to have beautiful skin during non flares and look very healthy, creates an advantage for us as we are not wasting in front of people but, then the disadvantage is its hard for people to understand what is wrong with us. I don't think about how other people will react, I consider how I feel in selecting the help needed to continue being successful. Unfortunately, disability is not a viable option for my life style. I am searching for other gainful employment within my profession and just praying I don't flare during an interview (that happened last time, I could not remember the question and answered what I last remembered, needless to say the interview tanked.)
I am not familiar with your meds, but some take up to 3 months to feel the full affect, and sometimes the first ones tried are not a success, so you go on to the next one. This is the 'clinical trials' of the Rheumatologist appointments.
You are in a tough spot. Businesses are so goal oriented and bottom line driven, that they have no sympathy for ones who can't pull the weight of several people in their performance. Being the health care provider puts you in a tough spot to be honest with them.