Lupus in the Workplace - Americans with Disabilities Act

Discussion in 'Fibromyalgia Main Forum' started by JLH, Jan 10, 2006.

  1. JLH

    JLH New Member

    The following article was in an email newsletter from RemedyFind ........

    1. Lupus in the Workplace

    by RemedyFind Columnist and Lupus Host - Suzanne Davis

    Lupus is not a rare disease. According to the Lupus Foundation of America , there could be about 1,500,000 Americans who have this disease. It is likely there are more. With this many patients, the disease must affect the workplace.

    According to the Foundation's recent campaign, the chances are that "Someone You Know Has Lupus". But few understand the disease. This creates some unique problems in the workplace. Neither employers nor coworkers may understand your problems. The employee can feel very alone in their work situation.

    While most lupus patients are able to live a full life and work outside the home, many need disability accommodations, have to cut back to part time work, or quit work completely. I would like to give examples of these, as I have experienced some of them.

    At the beginning to the disease I was able to work my regular job as a school cook, with very few changes. I learned to put my feet up when sitting, as I had problems with swelling in my legs and ankles. I learned to ask for help when lifting heavy items, otherwise, I was more tired than usual, but I could live with it. My coworkers and bosses knew little about what was going on inside my body.

    Most of us lupus patients deal with fatigue, which can cause difficulty in keeping up with work duties, as can pain in the joints. Some patients have found that the UV radiation from fluorescent lights in the workplace can cause skin sensitivity or flares. Others find that cognitive dysfunction or "brain fog" (see the October 2005 Lupus newsletter) makes following instructions or staying organized difficult.

    In the United States there is protection for disabled workers known as the Americans with Disabilities Act (ADA). Any employer who tells you that you must change jobs, take a pay cut, quit your job, or make special accommodations to the workplace due to your disease is probably acting illegally.

    As my disease progressed, I found that my ankles began to hurt more and more. I needed to be off my feet as much as possible. I started having problems holding onto items. I requested a disability accommodation, which allowed me to use a chair during the times when I was required to stand still for long periods of time.

    Before long, my coworkers began to harass me, as I didn't "look" sick. It wasn't easy for them to understand that I had a serious, debilitating disease. They felt I was getting preferential treatment. In the meantime I was becoming more and more fatigued and unable to concentrate. Every afternoon, I came home and slept until it was time for bed. I found I had to call in sick almost every Friday. I wanted to cut my hours, but that was not possible.

    Sometimes certain medical treatments make work attendance irregular. Examples are Cytoxan infusions with the resultant nausea and hospitalizations for infections or complications. Even the frequent visits to physicians may make a regular work schedule difficult.

    It is against the ADA for coworkers to harass, or in other ways make you feel uncomfortable because of your disease, perceived or real. If it happens, a complaint should be made.

    Your employer does not have to create a new job for you, but they must do everything they can to make accommodations (with some exceptions). However, some of the best employers make an effort to do everything they can to allow their disabled employees to continue to work, despite the cost and effort. It might be in your best interest to go to your employer with suggestions for changes that would make your job easier. Just remember to keep it pleasant. You should phrase your request as a positive move for the company.

    Your union, or other association, may also be able to help you.

    I quit my job and applied for long term disability (LTD) at the end of that school year. The stress of dealing with my employer, coworkers, and my deteriorating physical condition was taking its toll on my body and mind. I was able to get the LTD and am now in the process of applying for Social Security Disability Insurance (SSDI).

    While SSDI is meant to help those with debilitating disease, it is not easy to get approved. It can be a very frustrating, lengthy process. It is best to document everything that could possibly deal with an ADA claim or when you apply for LTD or SSDI benefits as soon as you begin to notice difficulties.

    As each person's lupus is as individual as the person themselves, so are the conditions they work under and the adjustments that might need to be made. Most lupus patients do not need any accommodations, but it's good to be aware of your rights in case the need arises.

    This is a personal story someone with Lupus submitted to RemedyFind ....... She tells how she feels with Lupus--just in case you want to know some symptoms of the disease .........

    2. Featured Member - cathylupus

    Hi. My name is Cathy. I am 38 years old. I have had symptoms of systemic lupus since 1980's. I was finally diagnosed in 1996. After 3 miscarriages I did finally have 2 children. I did not know of the lupus then nor did my dr's.

    In 1994 I started having a lot of fevers, joint pain, rashes, raynauds, hives. so i went to dr . they treated me just with ibuprofen & sent me on my way. Finally in 1996 i got someone to take me seriously & i was diagnosed with lupus. In 1999 my lupus was active so I started on plaquenil, pred & immuran. methotrexate that year. In July 2000 I started having odd neurological problems. I developed optic neuritis in my left eye, severe spastic muscles in my arms & legs. Having difficulty walking nor standing.

    Up till this point I had been exercising & walking 1 hr a day. Once that started my life hasn't been the same since. In the years 2001 I tried to find out what was causing these problems but a lot of unknowns & not very knowledgeable dr's. After that I did not go to dr's till 2003. In 2003 I got a new primary & things started to go different. He got me into see a new rheumatologist, neurologist & finally now in 2004 a neuro-opthamologist. The neuro-opthamologist discovered that I have bilateral optic neuritis, spasticity, cns lupus/MS, vasculitis, & antiphospholid syndrome. So finally after all this time a name to the weird odd things...

    Since 2004 I have been on prednisone at a level of 60mg, baclofen 60mg,ultracet 2 pills every 4 hours for pain,.. (they don't really seem to do much personally). The pain from the spastic muscles seems unreachable to me. This past year the muscles have started to atrophy and my bad leg the rt leg I can no longer move at all. The spastic muscles causes the inability to move. My walking is very bad I walk short distances with a cane but anything else is a wheelchair deal. Not too much fun since I just turned 39 this wk.

    My latest problems as of past 2 weeks has been another bout of optic neuritis. woke up one night to being blind in my rt eye again. So the blurry and double vision have been greatly worsened since that time. Last dr appt one of those humbling times. You know you ask the question - "So will things ever change or get better?" Dr replies in a sad look.... "No I'm sorry,. it won't ever get better... I was sad for bit but what can you do but look fwd and keep on going? Well thanks for those that read this and letting me share. Hugs, Cathy

  2. NyroFan

    NyroFan New Member

    I wrankles me when people say 'You don't LOOK sick'.

    Also: this can be so applied to FM/CFS on all levels.

    Thank you for posting it.
  3. JLH

    JLH New Member

    I just hate it, too, when people say "but you look so good ... you don't look sick!" Grrrrrrr

    Since lupus and fibro/cfs have so many of the same dibilitating symptoms, I think it could be applied to both. Fibro doesn't involve the organ damage that lupus can do, but its other symptoms affect you just the same (I have all three problems).

  4. JLH

    JLH New Member

  5. JLH

    JLH New Member

    As this could apply to fibro, too.

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