Having a job and having lupus can sometimes feel like two opposing forces. People who don’t know much about lupus may have a hard time understanding the disease, especially if you “don’t look sick,” so the decision to tell or not to tell your employers and coworkers can be challenging. There is no clear-cut answer.
When this issue comes up in our support groups we get mixed responses. Some patients say that their employers are extremely understanding and accommodating. Others have chosen to keep the lupus to themselves and work through their discomfort out of fear of jeopardizing their employment status or turning their employment experience sour. This is something that needs to be assessed on a case-by-case basis and should be based on your comfort-level in your specific work environment.
Most people are protected under the Americans with Disabilities Act (ADA) that requires employers to make reasonable accommodations for employees with disabilities. The accommodations could range from making reasonable adjustments to your physical environment (e.g., a special chair), or allowing you to work from home when you are feeling very fatigued, to taking time off as needed if it is related to your condition (i.e. Family Medical Leave Act [FMLA]), etc. Learn more about guidelines for employers.
I would suggest assessing your work environment before making any decision. Consider: What is the culture of the work environment? How comfortable are you with sharing about lupus with your employer? Is there a Human Resources (HR) department? Does your employer tend to be respectful and caring? What is the sense that you get if you tell your employer? (Remember – if you have a good HR department, this could possibly offer you protection from your immediate supervisor knowing the details of your condition, depending on their policies.) What are your coworkers like? Can you cope with any negative behavior from them? Are they generally friendly? Is your employer generally flexible?
If your employer is supportive and is there privacy in the work environment, then your decision to tell might be a safe one.
What if you work somewhere where everyone knows the details of everyone else’s lives? This might be an issue if the human resources department is informal and the person with human resources responsibilities is friendly with the rest of the staff. If you decide to address your concerns with this person, you would need to diplomatically reiterate confidentiality and your rights to privacy.
Privacy might be an issue for you if having lupus is something you do not want your coworkers to know about. Some work environments are so small that it is hard for people not to notice that you are not feeling well or receiving accommodations. If you prefer to keep things as private as possible, this could require a commitment from you to refrain from sharing with any coworkers, at all, so that word doesn’t accidentally get out from one coworker to the next. You might even want to have a vague answer ready if someone inquires about your health or accommodations -- perhaps something like, “I really do appreciate your concern, but I’m very private so I prefer not to talk about it.”
Some people have a representative from their local lupus agency make a presentation to their coworkers about lupus in order to demystify the condition, help coworkers understand the challenges they face, and reiterate that it is not contagious. Some prefer to leave reading material in common areas. Others might decide that privacy is not a concern, but prefer to discuss it with coworkers as it comes up, one-on-one. Every situation is different, and sometimes requires creative and tailored responses.
What if your employer is not supportive and accommodating? I have known some people to continue with their request despite facing a difficult employer because not asking for these accommodations is more difficult to deal with than asking for them. Yes, sometimes it can be challenging to get them put into place, but remember, most employers are mandated by the ADA to provide such accommodations and not doing so would be illegal. If you face such challenges, you could obtain the assistance of a local disabilities rights advocacy group or contact the Job Accommodation Network, which provides free advice on job accommodation issues.
What you decide depends on your assessment of your unique work situation, but as you can see, it takes a lot of thought and weighing of options.
I have attached a document that was written as a guide for employers who hire people with lupus but it has some very helpful resources and tips. Feel free to utilize the resources yourself, or even provide your employer with a copy of the document.
Also, some of our patients prefer work-at-home job opportunities.
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