Lupus and Employment: To Work or Not to Work?

One topic I hear about often when it comes to lupus and chronic illness is the subject of employment. In the past 17 years, I’ve heard some incredible stories of compassionate employers from people living with lupus. Unfortunately, I have also heard stories that have made me cringe.

Working when dealing with lupus is a tricky thing — I personally have been balancing on this tightrope for years now. And while there are many subtopics on the issue of employment, I’d like to quickly dive into a few that come up regularly. Perhaps some of these tips can help you on your journey to finding the right employment scenario, depending on your level of disease activity.

To work or not to work?

The answer to this question will depend on your unique scenario. On LupusChick, I hear this question often, especially from people who are newly diagnosed: “Will I still be able to work?” I feel that if your disease activity ranges from mild to moderate, it’s best to delay making that decision after diagnosis. Get to know how lupus affects you daily. Keep a journal and record your fatigue levels every day, your pain, and how well you function on a regular basis. This will give you an idea if part-time or full-time work is a possibility for you. If your symptoms are all over the place, and you feel you cannot work outside of the home regularly with scheduled hours, a remote option with flexible hours might be a good choice if you can find a gig within your skill set (Flexjobs.com is one of my favorite remote job search sites, by the way).

If symptoms are moderate to severe, the ability to do the simple activities of daily living are impaired, and you need help, working might be out of the question — at least for the moment. In these situations, you might want to speak to your doctor about your options regarding disability. Your doctor’s help is crucial as they will need to fill out multiple forms, and this is the person who knows your symptoms, activity level potential, and limitations, etc.

The subject of disability can be difficult for some people to accept, as they feel it is a defeat in terms of independence. I completely understand this sentiment. Disability is a good option, however, for those who are unable to work and have trouble completing daily tasks or taking care of themselves. In the future, as I have seen in many patients, your lupus disease activity may decrease with the use of medications, and you may want to return to work part-time. You do have the option to return to work on disability, although there are limitations as to how much you can earn. You can learn more about that here.

Applying for a job and thriving in your environment

Another scenario when it comes to work and lupus is applying for jobs and determining if you should share any health issues with a potential employer. First, you aren’t required by law to disclose you have lupus in an interview or when you accept a job. I have heard from career coaches, however, that there are a few things to consider, such as if your illness will negatively impact upon your job responsibilities from day one, you may want to discuss your health condition with your supervisor. If you are let go later because you are unable to perform these duties, there have been cases in which employers cite nondisclosure on the employee’s part.

I have been upfront with employers for a number of reasons. First, with LupusChick being a public entity and lupus being visible all over my social media, I can’t hide it if an employer does an online search of my name. Second, I prefer to put it out on the table during the second or third interview. If the employer gets cold feet, or suddenly acts differently, I realize he or she is no longer looking at my accomplishments and what I can do to help their company succeed, and it is most likely not the job for me — and that’s OK.

Finding a job that allows you to manage lupus might not be the easiest thing, but it is possible. There are compassionate and understanding employers out there who are aware of the disease and understand we may be protected under the Americans with Disabilities Act, which allows us to ask for reasonable accommodations when working with lupus.

With accommodations and the right working environment, you can achieve success.

How have you managed with working and your lupus symptoms? Please share below.

***