“No employer has the right to fire you simply because you have lupus.”
– Dr. Robert Lahita, Lupus Q&A, 3rd Edition
For many who are diagnosed with lupus, a future change or loss of job may be inevitable. Not only can this be an incredible loss, but it can also be a huge paradigm shift in a person’s life. Reasonably so, since many people find great meaning in their occupation and feel very accomplished in the steps they took to achieve it. So when one is given the diagnosis of SLE or another lupus overlap disease, it may often feel that their hard work has been in vain.
So how do you maintain some sense of “work identity” when you are having to balance doctor’s appointments, taking medications, and hospitalizations? How do you manage? How do you keep working if that is what you desire?
We, at Kaleidoscope Fighting Lupus have put together some tips to help you deal with lupus on the job.
Lupus in the Workplace
If you feel your disease is hindering your day-to-day duties, or you are having to miss work, it’s important to be honest with your employer. We suggest you studying up on the American with Disabilities Act and being aware of your rights as an employee. Those who have a disability (including lupus) are entitled by the ADA to have reasonable accommodations provided by their employer so they can continue to perform their job.
These accommodations may include:
- Extended breaks
- Flexible hours
- Working from home
- Allowance of a service animal at work
- Special desk lighting
- A desk close to the restroom
- Special equipment to operate the computer or telephone
- A parking location close to your workplace
- UV Protective hats or clothing when working outside
We also recommend reaching out to a job accommodation specialist. The U.S. Department of Labor’s Office of Disability offers a free service called the Job Accommodation Network (JAN). A consultant from JAN can give you ideas on how to accommodate your illness at work and work around certain limitations. The also can help coach you on how to talk to your supervisor and coworkers about your illness/disability.
Dr. Robert Lahita, in his book entitled Lupus Q&A states, “No employer has the right to fire you simply because you have lupus.” If you feel you are being treated unfairly because of your lupus or you have been terminated unjustly, seek counsel. For a list of resources, click here. Back to top
The ADA states that your employer is not required to provide you with special accommodations until they have been told that you need them. So the best thing you can do is be open and specific about any help you need to aid you fulfill your job responsibilities.
It is helpful to put in writing what your needs are, before you meet with your supervisor. Be specific about the things that you need help with. For example, if you struggle with extreme fatigue, you might ask for a longer break at lunch so you can lay down and recharge. Or, if you suffer from photosensitivity and your workstation is by a window, you might ask to move your desk.
It is important to tell your employer, in writing and in person, how certain accommodations will help make you a more productive worker. It is also important to provide a note from your doctor about why your request is necessary. Lastly, your employer may have different or more effective suggestions than what you put in writing. Be flexible and willing to think outside the box. Back to top
To tell or not to tell your co-workers about your lupus diagnosis is completely up to you. ADA guidelines prohibit your employer from telling others about your condition or any special accommodations being allowed for you. Eddie Whidden, a senior consultant for JAN writes, “Some people want everyone to know, so coworkers understand why they are getting what might look like special treatment. Other people don’t want anyone to know. It’s really up to the individual.”
If you feel you want to share your diagnosis with your co-workers, here are some talking points.
- It affects over 1.5 million Americans
- It is not contagious
- There is no cure, but it can go into remission
- It mainly affects the “inside” so it is considered an “invisible illness”
- It affects everyone differently
Okay, here we go. The “D” word. Some people fight years to receive it, some fight year’s to ward it off. Regardless of what side of the ring you are on, it is good to know what you are up against. The best thing to do is to research as much as you can regarding applying for disability.
When you apply, the Social Security Administration will compare your condition to a listing of conditions known as the “Blue Book.” Lupus is covered under Section 14.02 of the Blue Book which covers systemic lupus erythematosus. According to the Blue Book, in order to qualify for disability benefits with this condition you must be able to prove that:
- The condition involves two or more organs or body systems and that:
- One of the organs or body systems is involved to at least a moderate level of severity; and
- At least two of the constitutional symptoms or signs (severe fatigue, fever, malaise, or involuntary weight loss) are present.
- You suffer from repeated manifestations of SLE, with at least two of the constitutional symptoms or signs (severe fatigue, fever, malaise, or involuntary weight loss) and one of the following at the marked level:
- Limitation of activities of daily living.
- Limitation in maintaining social functioning.
- Limitation in completing tasks in a timely manner due to deficiencies in concentration, persistence, or pace.
You can either submit an application for disability online or at your local SSA office. Be sure to include the necessary medical records and financial documents to prove your eligibility for benefits.
Try not to get your heart broken if you are denied your disability claim on the first try. The majority of people are. According to CDA’s 2013 Long-Term Disability Claims Review, musculoskeletal/connective tissue disorders were the leading cause of disability claims. With that being said, there are a few things that can hinder your application. These include:
- Missing important medical information
- You earn too much
- You failed to follow prescribed therapy
- Your disability is based on drug addiction or alcoholism
- They cannot locate you for more information
- Your disability is related to a crime
Changing a job, cutting back on hours or going on disability – are ALL difficult decisions. And it can affect you emotionally. As mentioned in Your New Normal, Finding Joy After a Lupus Diagnosis, making the realization that your value is not in what you do, can take time but is essential to moving forward with your new normal.
“You are valuable because you exist. Not because of what you do or what you have done, but simply because you ARE.” – Max Lucado Back to top
Author: Kelli Roseta
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All resources provided by us are for informational purposes only and should be used as a guide or for supplemental information, not to replace the advice of a medical professional. The personal views expressed here do not necessarily encompass the views of the organization, but the information has been vetted as a relevant resource. We encourage you to be your strongest advocate and always contact your healthcare practitioner with any specific questions or concerns.