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Lupus and Employment: Knowing Your Options

Lupus not only can have a profound impact on your physical health, emotional well-being, and personal relationships, it can also have a profound impact on your work and professional life.

Note: This article includes some of the latest research on lupus and employment issues and provides resources and suggestions, but nothing replaces getting good advice from trusted financial planners, employment advisors and professionals with to expertise to navigate chronic health issues and how they impact your employment.

Introduction

Research is still somewhat limited regarding the effects of lupus on employment; however there is overwhelming evidence that lupus has a very significant impact on a people’s ability to work.  At least one study has shown that about 30% of those with lupus are on work disability, and in another study, published in 2016 in the journal Work, researchers Neelam Agarwal and Vinod Kumar determined that lupus accounted for about 20% of the estimated 1.5 million Americans on work disability, and that this loss in productivity nationally could be estimated at almost $13 billion every year.

According to a 2007 study published in Arthritis & Rheumatology, some individuals with lupus may loose almost two decades of work, over the course of their productive lives – due to the symptoms and complications that they experience.  This is exacerbated by the fact that so many are diagnosed at the beginning of their professional lives.  This same study found that for those who were employed at the time of diagnosis, around 36% stopped working after 10 years, just over 50% stopped after 15 years, and after 25 years, the number who stopped working was just under 75%.  These are sobering statistics for societies where a person’s job can significantly affect their social status, ability to socialize with peers, overall quality of life and the ability to retire comfortably.

How can you, as someone with lupus, make the most of your productive years and create an environment in which you can thrive and feel valued … as well as feel good about your future?  Here are some thoughts that may help you be a proactive advocate for yourself in the areas of employment.

First, a story about Julie …

I, actually, first learned about lupus when I was eighteen while working with my friend, Julie, who is a year older than I. Every day Julie handled what seemed like mountains of paperwork and stood for hours scanning documents into an electronic database.  However, Julie began missing more and more work as she started to suffer from inexplicable joint inflammation and pain, which manifested primarily in her hands.  This made mundane tasks like carrying files and even opening and closing our office door almost impossible. Julie was soon diagnosed with lupus.

Fortunately, our boss saw value in Julie. She allowed Julie a flexible schedule in order to make medical appointments. She worked with Julie to arrange her desk so that she had a place to comfortably sit and work when standing for long periods of time was too difficult. She made sure Julie had the latest and greatest in office and desk supplies.  For example, her pens had easy to grip modifications, her computer mouse was easy to maneuver and her electric stapler was state-of-the art.

Julie thrived. Julie was lucky.

However, if you have lupus and if you work, you may not feel so lucky. You may think that no one understands how bad you feel. You may also feel guilty about the time you miss because you have medical appointments or need to call in sick or arrive late on days when you are running extremely low on energy.  Trying to describe fatigue, especially in the work place, is one of the most challenging hurdles for many dealing with lupus.  If you’re like my friend Julie, you may look perfectly healthy even on the days you feel at your worst.  You may assume that no one at work takes your lupus seriously, and that you may worry about losing your job.  What can you do?

Working with Your Employer to Raise Awareness and Feel Valued

A 2018 article published in the journal Lupus identified common barriers to working while having lupus through its survey of approximately 400 individuals. These barriers can often cause conflict on the job because they can be difficult for others to see or even understand. The top three barriers include:

  • Fluctuation – symptoms of lupus often change as well as their severity and it’s not always predictable, resulting in unplanned time off. You may be fine one day and wake up feeling like a truck hit you the next.
  • Fatigue – the fatigue experienced with lupus, especially during a flare, can be debilitating, making it difficult and even impossible to complete physical and/or cognitive tasks and result in brain fog.
  • Invisibility – People may tell you how pretty and healthy you look when you actually feel pretty horrible. Unless you experience cutaneous lupus, no one may be able to tell how sick you really are.

If you really love what you do and have a boss who understands, consider starting a conversation that addresses these three barriers and how looks can be deceiving in the work place. My friend Julie’s openness strengthened her relationship with our boss and in turn with our team – in essence, Julie was advocating for lupus. While you are under no obligation to discuss the exact details of your diagnosis, providing some insight as appropriate may build trust and increase awareness around the office. Directing your coworkers to a place like Kaleidoscope Fighting Lupus and the many resources we offer may help to spread the word on your behalf and on behalf of others living with autoimmune disease.

Making the ADA Work for You

If any of your lupus symptoms can be considered as a disability as defined by the Americans with Disabilities Act (ADA) and you work for an organization that employs more than 15 people, you may be able to ask for reasonable accommodation through the ADA. As Julie experienced, symptoms like pain and stiffness or symptoms from various overlap diseases can make doing your job difficult though perhaps not impossible – it may just take a few adjustments to your schedule or work environment to provide ease and ensure performance. The ADA only works, however, if you ask!  It is possible that your request could be denied if it significantly impacts the flow of business or causes your employer too great of an expense. It may be helpful to first have a conversation with your healthcare practitioner about your intent to keep working and about what you may need in order to stay employed.

Always remember to seek the advice of a professional who is well-versed in the ADA if you have questions or concerns about accommodation.

Alternative Work Environments

If physically going into the office every day has become challenging and your employer is unable to make an accommodation that allows you to work from home, it may be time to seek alternate employment. These days, more and more jobs can be done from home via telecommuting and some allow for flexible hours. Not having the strain of waking up as the rooster crows or driving in gridlock traffic may alleviate stress and might even bring some symptom relief. You may find you only need to work part-time or do contract work.

It is always a good idea to meet with your local employment agency or find someone who can advocate for those with chronic illness.  Here are some examples of organizations with websites that list telecommuting and contract jobs (you’ll just need to filter for these jobs):

  • Flexjobs (the free version should be just fine)
  • Craigslist (you can always pull up a list from another city to see what they have to offer)
  • Indeed
  • Idealist
  • LinkedIn (again, the free version should be fine)

When Working isn’t an Option

Your health-related quality of life (sometimes referred to as HRQOL) can impact your employment.  While there isn’t one agreed-upon definition for HRQOL, most researchers agree it’s multi-dimensional and includes:

  • An individual’s predisposition to SLE and how SLE has manifested.
  • The physical, cognitive and emotional symptoms an individual with SLE experiences.
  • How the individual with SLE physically, socially and psychologically functions.
  • The individual’s overall health perceptions.
  • Overall rating of quality of life in the individual with SLE.

At some point, your HRQOL may indicate you shouldn’t be working. If so, speak immediately with your healthcare practitioner about your options. She may suggest contacting the Social Security Administration (SAA) about disability benefits eligibility and will work with you on filing a claim. You and your health are too important to ignore and hopefully by now, you’ve done some self-reflection about what you value in life and have a support system in place to help you transition through this change and make your new dreams possible.

Redefining Success

We live in a society that measures success on how hard we work and how much we earn. The more we feel valued by our employer, the more we value ourselves. Having lupus can make all of this seem impossible as symptoms like fatigue, lupus fog and pain may render us incapable of performing our job at various times during our lives. We may be afraid of being perceived as being lazy or trying to get away with something … even though we are trying our hardest to meet the expectations of both society and an employer.

One of the most important things you can do for yourself is to consider what success means to you. Success is unique to who you are, your values and your goals. We are all much more than our job – life is multi-dimensional and so are we. You may feel great pride and success when you look at your children or your garden. You may glow with joy when you draw a seascape or write poetry. Having lupus may actually help you re-evaluate what is truly important and what you want from life. At some point, you may even choose a different career in order to feel fulfilled. Happiness and success may end up looking completely different to you than they used to…and it may feel surprisingly good. Take the time to redefine success!

In Conclusion

Employment has some of the most significant impacts on the lives of those living with lupus, and it can impact all other aspects of those very same lives.  The ability to work – and to work hard – can come with tremendous social pressures and the obvious financial ones.  However, the many expectations of work do not have to define you as an individual. Getting to know yourself a lot better through your lupus may actually help you reassess your dreams and goals.  You have the opportunity to assign new values to what is important to you. You may be lucky enough to have a great job and dream boss who is sympathetic and sees value in you.  Your employer may even work hard to make sure working isn’t too hard for you.  Alternatively, you may have to move on to a new career or work situation. Either way, in a 21st century that values ingenuity, individuality, creativity and flexibility, there are many options to the traditional “9 to 5” expectation that may be more suitable for individuals living with lupus. Taking the time to reflect and soul-search may be just what you need to set yourself up for success

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References

Agarwal, N., & Kumar, V. (2016). Burden of lupus on work: Issues in the employment of individuals with lupus. Work, 55, 429-439. doi:10.3233/WOR-162398
Applying for Social Security disability benefits with lupus. (2019). Retrieved from: https://www.disability-benefits-help.org/disabling-conditions/lupus-and-social-security-disability
Booth, S., Price, E., & Walker, E. (2018). Fluctuations, invisibility, fatigue – the barriers to maintaining employment with systemic lupus erythematosus: Results of an online survey. Retrieved from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6247450/pdf/10.1177_0961203318808593.pdf
Criswell, L., Gillis, J., Katz, P., Panopalis, P., Trupin, L., Yazdany, J., & Yelin, E. (2007). Work dynamics among persons with systemic lupus erythematosus. Retrieved from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2875125/pdf/nihms197537.pdf
The Americans with Disabilities Act of 1990 and revised ADA regulations implementing Title II and Title III. (n.d.). Retrieved from: https://www.ada.gov/2010_regs.htm
What is the Americans with Disabilities Act? (2019). Retrieved from: https://adata.org/learn-about-ada
Yelin, E., & Yazdany, J. (2010). Health-related quality of life and employment among persons with systemic lupus erythematosus. Retrieved from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2833285/pdf/nihms166140.pdf
Zeppieri, M. (2019). Lupus and employment: To work or not to work. Retrieved from: https://lupusnewstoday.com/2018/06/19/lupus-employment-work-tips/

 

Author: Liz Heintz

Liz Heintz is a technical and creative writer who received her BA in Communications, Advocacy, and Relational Communications from Marylhurst University in Lake Oswego, Oregon. She most recently worked for several years in the healthcare industry. A native of San Francisco, California, Liz now calls the beautiful Pacific Northwest home.

All images unless otherwise noted are property of and were created by Kaleidoscope Fighting Lupus. To use one of these images, please contact us at [email protected] for written permission; image credit and link-back must be given to Kaleidoscope Fighting Lupus.

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.

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