Lupus and Employment: To Work or Not to Work?

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.

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Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.

2 comments

  1. Tanja says:

    I am currently looking for work after 20+ years. As a MA I held jobs doing front and back office, processing claims, patient registrar for a hospital and ran the billing for multiple physicians. I was diagnosed in 1999 and went down hill fast soon after. I had pericarditis, strokes, neutropenia, and so much more. I left the medical work force and went on disability. I was able to do some part time work out of the medical field 6 years or so after. I worked in a gymnastics facility as the front office lady to help cover my daughters tuition cost and was a 4-H Horse Leader for over 6 years. At the gymnastics facility I ended up overseeing their billing and as 4-H leader I organized over 20+ horses and kids going to fair. Now 20 years later I have been stable with my disease and wanted to try to get back into my profession. Medical billing had changed a lot so I went back to school and earned my Assoc. Degree in Billing and Coding and passed the very difficult CPC and CCS certification exams. The disease has given me so many challenges but I feel that it has made me tougher and it has not affected my ability to learn new things. I have applied for coding and business office type positions but I have not gotten 1 interview. I have been disclosing that I have or had a previous disability on my applications but I am now feeling this could be harming my chances for a interview. I have done other items to help me stand out. I was the Community Resource officer and Student Leader President in college and I am the Education Officer with the local AAPC Chapter. I know that securing your first coding job can be hard but I am willing to work my way up with a entry level position. Besides doing blood tests and taking a good amount of medication still most people would never even guess that I even have a disability. I am starting to get frustrated after 20+ applications with local hospitals. A friend that has way less experience in the field and a technical diploma in medical billing was able to get into the business office at a local hospital and I can’t even get a interview. The job demand seems to be there. Should I leave off my disability on applications?

    • Hi Tanja – Hope you are well. Personally, I never put lupus on my CV or resume but that decision is really up to you. While you aren’t legally bound to disclosing your medical information up front, some HR experts say it is good to mention it if a job offer is made to you in case you need any accommodations, and the employer won’t be surprised later on. Something I also do with resumes, not with lupus being on it but other potential changes, is I make two versions and make a list of which version is going out to which job. You may see that one version attracts more people and gets more responses. That is one way to test if leaving it off of your resume is helpful!

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